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May 15, 2013

D-Blog Week: Memories.

I remember being nine or ten years old, on my hands and knees, crawling up the staircase to get to the kitchen, where my mom was cooking dinner. 

I remember calling out for my mom, but the words lost their form and letters fell into a heap on the staircase.

I remember my mom sitting on the kitchen floor with me, breaking graham crackers into smaller bites and putting them in my mouth, dinner burning in pans on the stove.  I remember my mom's eyes being very wide but she wasn't crying.  I remember a glass of juice.  I remember it was hard to chew because I was crying but I wasn't sure why, and then there's a sharp edit in my memory, where I don't have any recollection of what happened next. 

As quickly as it came, the low blood sugar passed.  I don't remember what caused it.  I don't remember recovering.  I don't remember what my face looked like, or how empty my eyes must have been, or what I sounded like as I crawled up the stairs, calling for my mom.  I don't remember thinking about it for days afterwards.  I don't remember feeling affected by it for more than those few minutes.  

I think about my mother, cleaning up the cracker crumbs and placing the juice glass in the sink, salvaging what was left of the dinner she was cooking, trying to forget.

[For more posts about Memories on D-Blog Week, check out these links.]

February 06, 2013

Context.

Out of context, this early morning Dexcom graph looks like things are all figured out, with barely a bite into the hypoglycemic range.  It makes diabetes look easy.  It makes blood sugars look like they are something you don't even have to think about.

Hey, this looks okay ...

Until you see the whole picture, in context:

... oh, I get it now.  Yesterday you were high all day.  That blows.

Yesterday was miserable, blood sugar-wise, with numbers cruising around in the high 200's and not budging for hours, despite rage-bolusing.  I felt sluggish and exhausted, my brain cells thick with sugar and every word in my mouth swiped by hyperglycemia.  Hours with high blood sugars are The Suck.  It took a full infusion set change (new insulin bottle, new site, new location) and some exercise to bring things back into some semblance of "control." 

The big picture sometimes isn't pretty, but it's real.  And today will be better.  (I'm saying this over and over in my head, with my shiny new infusion set and this morning's Dexcom graph that's more seascape than mountain range, thankfully.)  Today will be better.

January 30, 2013

Scrabbled.

Diabetes management is a delicate balance between "I'm fine" and "How sick am I?"  Between feeling awesome and feeling like garbage.  Between being knocked down by a low blood sugar to finding your footing again a few minutes later. A balance of insulin and exercise, food choices and blood sugars, rinse and repeat.

A balance of try, fail, try, succeed, and try again, damn it!

On some days, it can be exhausting.  And if someone leaves you alone with a Scrabble board and too much coffee for too long, you might take your aggressions out on the tiles.  

The "yeehaw!!" is what I want to yell when I see a 100 mg/dL on my meter.

Hope is on there twice because it needs to be.  (Also, I couldn't find another C for "community."  And every time I added a blank, it just looked like I Photoshopped it and/or forgot how to spell.  And adding "mgdl" just looked sloppy, yo.)

January 31, 2012

What We Document.: Solving for "Why."

Dexcom graphs that look like gigantic Ms and Ws?  I see those all the time.  But when I sift through the pile of photos I have on my computer (in the folder marked "Diabetes Crap;" I can write real good, Ma), the Dexcom graphs I see are all pretty.  Nice, straight lines or soft bell curves, without the sharp angles.

I know these pictures aren't representative of how my diabetes is controlled, on a day-to-day basis.  There are way more times that I'm muttering "You stupid jerkface pancreas ..." than moments when I want to whip out my camera and take a snapshot for posterity.  But I like having these happier photos outnumber the ones that make me grimace, because when I need a lift, it's nice to have a catalog to draw from.  This is what I chose to document, visually, because it inspires me to earn this photo opportunity again, you know?


I chose to document this, because it made me feel good.

May will mark the end of my seventh year blogging at SUM (and starts the eighth year - jeepers), and when I look back through the archives, I'm weirdly proud to see a diversity in what's documented.  There are some really high moments (high as in "emotionally high," not "OMG, how did that 312 mg/dL sneak in there?" high), like when the Bird was born or when Chris and I got married.  And then there are low moments, like trying to be a strong advocate for PWDs while going through burnout, or when blue candles start peppering our Facebook feeds

And then I look at other people's blogs (holy crap, there are a lot of us!), and see that they're chronicling the good, bad, and decidedly 'eh' of life with diabetes.  The real stuff.  It's crazy how honest we are with the Internet.  I see people writing about things online that they might not be sharing with their doctor.  Or their coworkers.  Or their very closest friends. But it's shared here, and there's a power to sharing our stories.

I'm amazed at what we chose to document, as a community.  From celebrations of a no-hitter to scoring a quality pair of blue shoes, to difficult moments of feeling burnt out and admitting that we're struggling, what we document shows our strength as a community.  We're not afraid to share the stuff that really scares us, or empowers us, and we have one another to mark different milestones with.  What we share, as a global community, could help any one of us improve our health, emotionally and physically. 

Diabetes isn't a perfect math where you can just solve for X.  Usually, we're solving for "why."  And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.

January 23, 2012

Diabetes Burnout.

I've been slogging through some diabetes burnout over the last few months, but I'm starting to feel much better.  Things aren't perfect (Are they ever? Answer: Nope), but I've finally reached that point where I'm completely tuned in, rejecting guilt, and feeling like I'm on my way back to better diabetes control.  It's as much an emotional thing as it is a physiological one, and this video is about crawling out of the (primordial, most likely caramel-flavored) diabetes burnout sludge. 

Small steps are what move me forward best.  What helps you start stepping out of diabetes burnout moments?

October 17, 2011

To Palooze.

to palooze: v. the act of people with malfunctioning pancrei and their caregivers coming together for cupcakes, support, and fun

In the last few weeks, I've had the pleasure of meeting some old friends for the first time.  (That may sound like a peculiar sentence, but anyone who is part of the diabetes community and has found themselves immersed in a deep discussion about the emotional impact of this disease with an otherwise complete stranger understands the connection between PWD.) 

A few weeks ago, in Boston, I had dinner with Harry Thompson.  (He's @harrythompson on Twitter.)  Our diabetes is about the same age, and our daughters are, too.  Our spouses are supportive and amazing, and our collective appreciation for a good pun is unparalleled.  We spent a few hours exploring Boston and the North End, and we drank cappuccinos made from an old-fashioned coffee robot.  (More on that some other time, because if I try to explain it here, I'm sure to become confused again.)  But it wasn't weird ... it was comfortable, despite the fact that we hadn't met in person until that night.  Harry is awesome, in every freaking way.  (No photo, though, which I'm regretting.  We just forgot!)

And over this past weekend, I trekked into New York City with Briley and Karen to meet up with Simon and a whole pile of other PWD for what's become this strange Simponpalooza phenomenon.  It's hard to explain how and why people with diabetes forge a friendship that's instant and lifelong, despite differences.  It's harder still to explain to people why a man would want to fly halfway around the world to meet a bunch of strangers. 

But when you see photos, and read people's posts, and see videos, and take into account how much love is found in a disease that hurts so much sometimes, it makes more sense. 

I love that he has, like, a LOGO.
The "tour book," which served kind of as a yearbook for Simon's trip to NYC


Kerri, Jeff, and Briley, and Jeff OWNS this shot.  Owns it.


MOST of the group (because Kelly came running in seconds after the shutter clicked)

Kerri and Simon.  Simon says, "Look happy!"
"Simon says ... be happy!"

Actually, it makes perfect sense.

Thanks for coming to spend time with us, Simon.  And thank you to everyone who writes about the friendships found in the diabetes community.  Diabetes isn't exactly known for "giving back," but the community of people who live with it are

(More photos on Flickr here.)

September 16, 2011

30 Things About My Invisible Illness: 2011.

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)


August 24, 2011

From Abby: Dexy Pictures.

Abby's been rocking the Dexcom for the last three months, and she's fully immersed in both the data mining and the photographing of said data mining.  Here's her "PWD photojournalist" take on Dexcom'ing and documenting. (Also, welcome back, Abby!  We missed you while you were at camp!)
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I’ve had my Dexcom for almost three months now. While most of the time I hardly pay attention to it, sometimes I like to make a big deal out of certain graphs. I also had a habit of showing the really good and really bad graphs to people at camp this summer, and sometimes they took pictures of them. (Diabetes camp is a special kind of place, where we celebrate Dexcom graphs … it’s awesome.)

Anywho, here are a few of my favorites:


This was the closest I’ve come to a no-hitter and needed to show EVERYONE at a Tuesday dance at Camp Joslin. Normal. (Please ignore the gross shininess of my camp self.)


Then there was the time we went hiking and the combination of a 15g protein bar and a 75% temp basal kept me at a wonderful 140-150 mg/dL range the entire time.


I call this one "Dyslexy-Dexy," when I put a new Dexy sensor in and it was entirely confused about everything. My meter showed 117 mg/dL when this picture was taken.


This one is epic. I corrected after totally bombing a guess on pizza and ice cream (it was the day after I left camp, leave me alone) and then my correction factor worked BEAUTIFULLY overnight. Take that, beta cells. I don’t need you at all (unless you want to work again in which case I take it back and I totally need you).


This one is my absolute favorite. We got a cake at camp when all the nurses had passed their boards (I was the last one to take the exam, of course) and my bg was holding steadily under 100 from the time the cake arrived to the time we could eat it. I had to document this, obviously.

Sometimes diabetes plays fair. Sometimes it doesn’t. I like to keep these pictures to remind myself that no matter what I do, this stupid disease has a life of its own.  I’m also convinced it decides when it wants to play along and when it needs more attention, but that's a rant for another day.
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All this talk about photos is making me feel veeeeery guilty about not keeping my Diabetes 365 feed up to date.  I need to get on that. :)  Are you a diabetes paparazzier?  Do you like to keep visual tabs on your diabetes bits and pieces?

July 19, 2011

CWD: Parenting With Type 1 Diabetes.

Lead by Korey Hood and Stefan Rubin, the Parenting with Type 1 Diabetes session at Friends for Life was aiming to touch upon the different challenges of being a parent with type 1 diabetes, instead of the concentration on parenting a child with type 1 diabetes that Children With Diabetes was once known for.  This was my first year attending this session, and I sat between two of my best friends in the diabetes community - Scott and George.

"So thanks for coming, you guys.  We're here to talk about parenting with type 1 diabetes," said Korey.

At this point, people started doing introductions.  "Hi, I'm So-and-So and I was diagnosed with diabetes in 1998."  or "I've been diabetic for 16 years and I have three children."  Only introductions.  That's it. 

So why was I already crying?

I didn't expect to feel the way I did during this session.  Instantly, I was completely overcome with emotion.  And not in a quiet, just-a-few-tears-escaping sort of way.  Instead, I was a blubbering mess, sniffling and snarfing and wiping my nose on my sleeve.  It was this intense rush of emotions that I didn't even know I had ever thought about, never mind felt overcome by.  

The group talked about their diagnosis, and their decision to have children.  They talked about what it's like to have a low blood sugar affect plans to go camping.  They talked about how their children react to diabetes, and what inspires them to keep plugging ahead on their daily management.

One woman caused me to have to leave my seat and grab a box of tissue to keep for my very own from the back of the room.  "I was the only person with type 1 diabetes that I knew ... until my son was diagnosed."

I couldn't contribute.  I could barely catch my breath.  And it was embarrassing.  My daughter is only 15 months old.  She doesn't know much about my diabetes, save for the fact that I have my own personal remote controls that she wants to press all the buttons on.  She doesn't understand why I sometimes don't share my snacks.  Or why I can't pick her up every time she wants me to.  She doesn't understand now, but eventually she will.What you so worried about, Mama?

And I think that's what grabbed me and held me.  Before BSparl was born, I planned for her.  I planned and worked to become the healthiest I could be, and I loved her long before I carried her inside of me.  And then she was born, and the focus became adjusting to life as her mommy and as part of a family of three instead of two.  It wasn't until recently that I felt comfortable as a mom - used to it - and my heart finally allowed me to feel something other than the newness of motherhood.

I wanted to introduce myself to the group.  I wanted to tell them that I, too, was a veteran of type 1 but not so much of an experienced mom.  I wanted to ask them how they made sure their kids weren't overwhelmed by their diabetes.  And the question I wanted answered more than anything kept catching in my throat:  How do I explain this to my daughter?  But I couldn't ask.  I just sat there and listened.  And cried like a baby.  And thought about the fat little Birdy who was waiting for me at home in Rhode Island, flapping her little wings and getting ready to fly.

I love my family, extended and otherwise.

After the session was over, we spilled out into the hallway.  George caught me up in a hug and I just let let it all go.  The fear and that heavy feeling of "forever," coupled with a love for my daughter that I didn't truly understand until I thought about diabetes taking me from her.  I knew he understood.  I knew that Scott understood, too.  And so did everyone else who has raised a family while taking care of their own diabetes.  These friends of mine were parents with type 1, with children who were much more grown up than my little bird.  I knew that if they could do this, I could, too.  And having met both George's and Scott's beautiful and loving families, it gave me hope that my own little girl would grow up to love me just as much as I love her.

This session was the most emotional I have ever been in public, but it felt okay.  Safe.  The only casualty was George's shirt, which ended up with a smudge of mascara.  And perhaps some tears.  Or snot.  (Sorry, G.)

I saw Korey in the hotel later on, and apologized to him for being an emotional wreck in his session.  

"It's okay.  I totally understand."  But as soon as he started to talk, I started crying again.

"I'm sorry, Korey!  I think you're like a trigger for me.  I'll just email you."

This session was intimate.  And it hit a nerve on me that I didn't even know was there.  But I felt better afterwards, like I had experienced a therapeutic breakthrough, somehow bringing me even closer to both my family by blood and my family by blood sugar.

Thank you, George and Scott, for being the kinds of parents I hope to become.

June 20, 2011

Guest Post: What is a Diabetes Superhero?

If you don't know Captain Glucose and Meter Boy, you are about to have your animated world rocked.  This dynamic duo, aka Bill Kirchenbauer (Captain Glucose) and Brad Slaight (Meter Boy), are tireless advocates for the diabetes online community. They rap.  They advocate for why glucose meters matter.  And today, they're premiering their new PSA here!

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There are many important questions in the world today, like: Will there ever be peace in the Middle East? How will America pay off the deficit? What the heck is that thing on Donald Trump's head? We have no answers for any of those, but we can answer the question we are asked the most often: What is a diabetes superhero?
 
Years ago when we created the characters Captain Glucose and Meter Boy: The Diabetes Duo, we patterned them after iconic do-gooders like Batman and Robin, The Incredibles, and other non pancreas challenged comic book superheroes. We both have diabetes and being in the entertainment industry we felt that we could best contribute to diabetes awareness by using our creative talents. We came up with a TV pilot to star in but our agent said no one was interested in a sitcom about diabetes called "$#*! My Meter Says" so we decided to make a short humorous PSA (public service announcement) instead. We believe that basic diabetes information is more accessible if it's presented in an entertaining manner. At first we played the characters as live-action real people and we dressed up in handmade costumes, which really made our friends and family question our sanity. But we have since changed them to animated characters with special powers. We did this for two reasons: 1) animated characters have more of a visual impact, and 2) when you're a cartoon you never age or put on weight! 
 
Since first creating Captain Glucose and Meter Boy, we have come to realize that there already exists many real life diabetes superheroes. They can be found in the diabetes online community, or more acronymically appropriate, the D.O.C. They don't wear tights (good thing because those can really chafe) but they are on a similar mission to share their knowledge and help others. They are not in a lab looking for a way to cure "mouseabetes." These real life diabetes superheroes are at their computers spreading the word, writing blogs, supporting those in need, representing all of us at conferences, and fighting the good fight day in and day out. It is a long list of names that is growing faster than diabetes itself and they work tirelessly to help others without ever asking anything in return. Theses D-heroes are making a difference in the lives of many.
 
Dr. Seuss said in The Lorax, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." (He's good, but probably didn't write any stories about our disease because there aren't enough words that rhyme with diabetes.) His touching poetic line applies to the many people in the diabetes online community we've met who do care a whole awful lot. They are willing to share their knowledge, experience, successes, failures, hopes, fears, dreams, tears, laughter...and on occasion even something as effectively simple as a Diet Coke. Captain Glucose and Meter Boy's motto is "Be Your Own Personal Diabetes Superhero." These amazing  people help make that an achievable goal for everyone.
 
So now whenever someone asks us what a diabetes superhero is, we tell them to go to their P-C or M-A-C and log on to the D-O-C. That's where all the real diabetes superheroes hang out ...just don't expect them to be wearing costumes!
 
Here is our new animated diabetes PSA about fighting apathy. It introduces our newest team member Dee Dee (a.k.a. D-Girl). We are honored that Kerri, one of our favorite diabetes superheroes, is letting us "world premiere" it here on Six Until Me.

-- Bill Kirchenbauer (T2) and Brad Slaight (T1)

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(If YouTube is on the fritz, you can also check out the video on the duo's website.)  Thanks for helping to raise awareness and defeat apathy, guys!!!  

February 17, 2011

Kerri-Proofing.

The kid is mobile now, and with that mobility comes the baby-proofing of our home.  We have those little electrical socket covers on each outlet, the coffee table corners are capped with squishy edges, and a big ol' gate at the base of our staircase is locked and loaded.  So now, anything that BSparl shouldn't touch for fear of hurting herself is as carefully guarded as possible.

And I wish I could say the same for me.

Will power is not my middle name.  (It's "Morrone," switched from "Lynn" when I got married.)  I'm good when it comes to action-oriented plans, like resolving to test my blood sugar more often throughout the day, or making sure I exercise at least four times a week.  These plans involve getting up and doing something, and I'm motivated when it comes to checking that box. 

But the plan to NOT do something?  Little more challenging.  

Food has always been a bit of an issue for me.  Not surprising, since type 1 diabetes has a firm foothold in my dietary decisions and guilt about said decisions.  (Sneaking cookies?  I may have done that one or two ... thousand times as a kid.)  Growing up with type 1 diabetes and using the peaking insulins (NPH, Lente, UltraLente) that required timed meal structure, I was a card-carrying member of the "clean your plate or you will end up low" club.  It actually wasn't until I started using an insulin pump that I realized what "hungry" felt like, having been on an eating schedule for the previous seventeen years.  Adjusting to the fact that I didn't HAVE to eat was new.

In addition to that "Hey, hunger is confusing!" feeling, food is a confusing friend/enemy.  Frenemy.  Even at times when my blood sugars are completely in control and an Italian bread smothered in olive oil and salt indulgence-fest doesn't cause massive spikes, I still feel guilty about eating it.  Like someone is watching me, and I need to hurry up and swallow before they see me take the bread.  It's a very screwed up way to view something as fun and delicious as food, but it's a combination of the influence of diabetes on my food philosophy and the guilt assigned to something as benign as a banana.  (That, and how women are taught to view their bodies and their appetites of all kinds ... but that's a whole different post.)

Which brings me back to my problem:  not doing something. Avoiding certain foods at certain, inopportune diabetes times.  Not eating the bowl of pineapple when the Dexcom shows double arrows pointing up.  (Why IS it that high blood sugar equals ravenous hunger?  Seems like a cruel twist to me ...)  Not buying E.L. Fudge cookies.  And if you do buy them, not eating a whole sleeve on the ride home from the grocery store. 

Sometimes I want to Kerri-proof the kitchen.  

Maybe I should just stick an electrical socket cover in my mouth.

Can I Kerri-proof diabetes?  Or maybe diabetes-proof Kerri?

February 07, 2011

Postsecret.


I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting.  (Also, the photo permalink URL included "onbackdiabetestype1forever," so that was a bit of a hint.)  And I realized, thankfully, that I don't hold any secrets about diabetes, because I've had the good fortune of this community to help me feel supported and empowered enough to deal with all my diabetes demons openly and unabashedly. 

I've had a few ideas for a non-diabetes related PostSecret postcard in my head for a few years now, and I took these pink cookies as a sign that 2011 is as good a time as any to let some things go.  PostSecret is kind of like Pandora's box, only the secrets that are released come from inside of you.  Like blogging, it's a unique kind of free therapy, and who can't use that every now and again?

Thanks for the inspiration, diabetes postcard writer. 

What would be on your PostSecret submission?  Feeling brave?  Leave an anonymous comment here, if you want.  Or submit your own PostSecret to Frank (does he have a last name, or is he like Cher?). 

December 27, 2010

The Importance of Being Honest.

It's not all THESE.I have been writing on this blog about life with diabetes for five and a half years, and I am always proud to share the successes.  But it's easy to share the good stuff.  It felt good to tell everyone about being pregnant, and having really solid A1Cs throughout my pregnancy.  It felt good to keep those numbers steady while I was breastfeeding.  I felt like I was in control, at least to a certain extent.  And I felt proud to share that control.

But the past three months haven't felt good in any diabetes-related way.  I don't feel like I'm in control of my diabetes.  Honestly, I don't feel like I'm in control of anything.  And I'm not proud to share this.  I'm embarrassed and feeling sloppy and burnt out and a little sad.

Last week, I was at Joslin for an appointment with my endocrinologist.  She and I reviewed my blood sugars, of which there were few.  

"I'm not testing as much as I'd like to be.  Sometimes, I'm taking a fasting number and then not checking again until early afternoon.  I'm down to like four times a day.  And I'm not going to lie - I wrote these numbers down this morning while sitting in the waiting room.  I also made that one up," I said, pointing to a number on the sheet that represented a "before bed" test, but was actually a "before bed" from a completely different day.

She looked at my pathetic logbook and made some notes in her computer system while I purged my diabetic guilt.

"I did great while I was pregnant, didn't I?  And then while I was breastfeeding?  It seems like when it mattered for my daughter, I was able to put her first and make my health a priority.  But now, I'm in wicked burn out.  I don't CARE about a shred of this crap.  I don't want to test.  I am going through the motions in changing my Dexcom sensor and my pump sites.  I'm just ... pffft about the whole mess.  Is that normal for women after they have a baby, after all the hyper-intensive management?"

We talked for a while about how extreme the focus is on diabetes management while pregnant.  And how being checked on every week makes for a higher level of accountability, and as a result, a higher level of attention to diabetes.  How can things go off the track when you're being monitored so closely?

"It's very common for women to feel burnt out after they have the baby, especially if they were also breastfeeding.  That's more than a year of very intense management.  But what can we do to help you make changes for the better?"

The labwork technician came in to take my A1C.  While we waited for the results, my doctor checked my feet and my weight.  "You're two pounds away from your pre-pregnancy weight - nice job!" she said.

"I'll take the small victories," I replied, and the phone rang.

"Yes, okay, thank you," my endo said on the phone, and then set it back on the receiver.  "Your A1C came back at 8.6%."  She didn't make a face.  She didn't show any emotion at all - no judgment.  She just waited for my response.

"Whoa, that's much higher than I thought it would be.  I figured it would be up there, but not that high.  I haven't have that high of an A1C since college."  I felt completely deflated.  And like a crappy advocate.  And a crappy diabetic.  And knowing I wasn't in the best health to care for my daughter made me feel like a crappy mom.  "That's a pretty shitty number for me, especially where I was at for the last year and a half.  But I'm so spent and so burnt out on this diabetes garbage that I can't even muster up a big pity party or a bunch of tears.  I'm just like 'whatever.'  Yay apathy?"

She and I worked out a very small plan for change, including returning to see my certified diabetes educator in three months.  And my goals for the next three months are to test more and to try and iron out my overnight basal rates.  (Because I'm still in the "what the hell happened" mode of post-pregnancy, trying to find the right insulin goals for my still-adjusting body.) 

Apathy is good at times, because it keeps you from crying over a number you can't change in an instant.  Apathy helps you keep the feelings of self-loathing, guilt, and distress at bay.  But it also keeps you from feeling like you can make change because you just plain don't care anymore.  I can't change my A1C overnight, and I can't remove diabetes from my life equation, but I need to care again.  Even though I don't have a baby growing in my belly to keep my head in the game, I still need to take care of her.  And taking care of her means taking care of myself. 

So I left the appointment feeling something.  I'm not sure what, but at least I felt something.  I felt like I was ready to try again, and ready to stop ignoring a disease that affects every moment of my day.  And I left feeling slightly empowered, because like Chris told me over the phone when I called to tell him my new A1C, "Now you know where we're starting from.  And now you can make changes that bring you to better health.  We'll do this together."

And it felt good to actually feel something, instead of this emotional health void I've been in for the last 12 weeks or so.

I wish I had successes to share.  I'd love to end 2010 with the same feeling of inspiration I felt at the end of 2009, where I knew my world was changing.  But now, I have to understand that while everything changed, so much still hasn't.  My family has grown, my job has changed, and my home is different, but diabetes hasn't changed.  I need to reign it back in and make it more of a part of the background noise instead of assigning it to its own set of surround sound speakers. 

It feels good to share the triumphs, sure.  But I think this online community is just as important in helping us handle our tougher times.  This is an honest life with diabetes, not one that's all rainbows and unicorns

And that's that.  Thanks for letting me vent, you guys. 

December 14, 2010

Larry Bird, No One Invited You.

My symptoms of low blood sugar used to run the gamut:  numb mouth, dizziness, sweating, crying at will, shakiness, inability to see completely clearly but a heightened sense of hearing ... fun stuff.  The symptoms of a low blood sugar can really suck.

But you know what sucks even more?  Not having any symptoms at all.

A few days ago, I was making lunch for BSparl and trying to clean up the kitchen (never a good idea at the same time), and my hands felt a little fluttery.  But nothing really worth paying attention to for more than a second.  BSparl devoured her rice cereal and mushed up bananas and then she was down for her nap. 

As I closed her bedroom door, I heard the Dexcom BEEEEEEP!ing from the kitchen counter.  There's a different sound associated with the "low" and "high" alarm, and I was surprised to hear the low alarm sounding.

"I feel fine."  I said, matter-of-factly, but not sure I meant it.  I did feel just slightly ... off.  Abby (the cat) meowed as she circled around my ankles.  But a swipe with my blood sugar meter showed me at 33 mg/dl.

Oh come on, Larry. I love you, man, but not like this.  Not as a blood sugar.  

The problem was that I didn't feel low.  At all.  I didn't have even a whisper of a hint from my body that my blood sugar was rapidly heading towards chaos.  If it hadn't been for the Dexcom, I'm not sure I would have tested.

Instead, I found myself standing in front of the fridge and sucking down grape juice straight from the bottle.  (Note:  Don't drink the juice at my house.  I've licked all the bottles.)  Auto-pilot kicked in and I treated that 33 mg/dl as though I could feel every bit of it.

Oddly, I didn't start to feel low for another five minutes or so, when my blood sugar started to come up a bit.  Such a strange thing, but when I'm coming up from a Larry low (read:  in the 30's), it doesn't throttle me until my blood sugar starts the journey back upwards.  Around the 50 mg/dl mark, I started to hit the sweats, the adrenaline panic, and that weird, white fog of precision that envelopes me when I'm low. 

This lack of symptoms has me very nervous lately.  I know that my numbers have been both pinging and ponging all over creation lately, but it's downright creepy when I'm at a blood sugar so close to chaos and I feel like I could happily climb into my car and start driving, or pick up my daughter and start dancing, or wait just a little while longer before deciding to have a snack.  My body doesn't give me the hints I need anymore, and I'm not sure why. 

Diabetes is messing with my head.

My paranoid (and hyper-sensitive) Dexcom continues to wail even after I'm back up to 70 mg/dl, but I find the noise comforting.  I know I'm back in range, and I don't have that feeling of confusion or fogginess.   

"I feel fine," I said again, only this time I meant it.  

I wish every day could look like this.  But it, um, does not.  Lots of times, I see a big letter M.

October 21, 2010

Look Forward to Today.

We stand together, even when things get really tough.Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration. 

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, we're all we've got.

September 30, 2010

ePatient 2010: Are You One?

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I've written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I'm still comfortable with the term "ePatient."  I find it to be empowering - another "e" word - and having it as part of my identity makes me feel like I'm part of a very strong, very forward-thinking community.  Having lived with diabetes for ... forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it's part of my health."  Empowered, electronic, encouraged, engaged ... ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health - or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

September 29, 2010

Philadelphia Diabetes Meet Up.

Conferences are a good time and a great networking opportunity, but there's NOTHING like hanging out with fellow PWDs (and PWD caregivers). 

Hanging out with fellow diabetics (and their caregivers) in Philly!

Thanks for coming out last night, everyone!  It was awesome!!!

September 27, 2010

How Do You Advocate When You Feel Like a Schlepper?

(Post title edited, thanks to input from @kelsse.  :) )  I had a conversation with a fellow PWD a few weeks ago.  She was leading a support group for younger girls with diabetes, but she was having some trouble feeling in control of her own diabetes.

"I've been like 260 all day long.  It's hard to feel like a good role model when you're in such crap control.  I don't feel like a very good advocate these days."

And her comment stuck in my head and rolled around in there like a bingo ball for about two months.  This morning, as I was testing my blood sugar before heading downstairs to make a bottle for the BSparl biscuit, it dawned on me that her question is probably one that every patient blogger struggles with at any given time.  How do you put on a brave face when you feel like your disease management is in a tough spot?  How do you tell people to take control of their own diabetes when yours is roaming around unsupervised?  How do you advocate when you feel like a schlep?

For the last week and a half, I have been a walking diabetes disaster.  I'm still wearing the pump and the Dexcom and I'm aware of my disease, but I'm not managing it.  It's managing the hell out of me, though.  I'm not proactively nailing down any blood sugar trends, but instead am chasing random highs and lows that I KNOW have a pattern somehow, but I haven't motivated myself to really plot the numbers and find their rhythm.  I can count my daily finger sticks on one hand (pun sort of intended).  Overall, I'm treading water instead of making real progress towards actually making changes.

How many times can I say "Tomorrow is a new day"?  I feel like I've been singing the same tune for weeks now.  Is this a patch of diabetes burnout, brought on by diabetes obsessiveness in pursuit of the healthy pregnancy?  Whatever it is, I'm definitely in it and having a very hard time getting myself out.  The problem is priorities.  I have myself fooled into thinking that taking care of the baby, unpacking the house, and continuing my consulting work is more important than diabetes management.  What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn't ever as well done as it should be.  My health needs to come first.  Not last.  Or second to last.  Or finishing somewhere in the bottom five. 

It's hard to come online and admit these things.  I wish I could say that I had the baby and then bounced right back into fantastic control and excellent health.  But I'm struggling.  A lot. It's frustrating and I'm overwhelmed.  I don't make a habit of lying to you guys.  So even though I am trying to make changes, I'm feeling challenged. 

"I don't feel like a very good advocate these days," my friend had said that day.  But what makes her a good advocate is that she tries.  Every day.  And that's what makes the entire diabetes online community such a strong and honest source of support.  It's not comprised of a bunch of people with "104 mg/dl" winking back at them on their meters and a plate of chicken breast and baby spinach leaves smiling in low-carb contentment.  We're a bunch of real people writing about our real experiences with this disease.  And I'm so glad for that because I'm looking at string of several rotten diabetes days in a row, all lending themselves to settling in my brain and making me feel defeated.

You guys make it easier to dust myself off and get back on the wagon.  (Even though it is speeding by like the Acela.)  It's hard to advocate when you feel like a schlep, but it does feel good to be honest.  Honesty helps fuel advocacy.  And it also helps to be supported by people who really get it.  When this community helps lift us out of our respective diabetes burnout phases, it makes all the difference. 

... coffee helps, too.  ;)

Coffee does help.  A lot.  Like a freaking ton, actually.

September 10, 2010

24 Years.

Tomorrow is my 24th anniversary with type 1 diabetes. 

There's a lot I can say about the diabetes community, and how far things have come in the last twenty four years.  How what was once a disease that left me feeling alone and obscure now comes with a welcome bag and a community of people who can lift your chin when it sinks to your chest.  I thought about how many people I knew with diabetes on the day of my diagnosis (one) and how many I know today (far more than I can count).  

I am grateful for all of these things.  

Some years I want to celebrate another year marked with diabetes.  Sometimes I feel defiant, like I just poked diabetes in the chest and told it what's what.  Some years I want to keep to myself, feeling a little jumbled at the thought of so many years with this disease.  And some years I'm a combination of all sorts of feelings, just wanting my husband to give me a hug and have a bite of Fudgy the Whale with me.

Last night, I felt different.  This year's anniversary feels different.  Maybe because there's been so much change in the last year.  Maybe because this day could come and go unnoticed, because an anniversary with diabetes doesn't change the diagnosis.  Doesn't make my health any better or worse.  It's just another box I can check, another year that I can say, "Yes.  I've been at this a long time."  Maybe it's because I will wake up tomorrow and it will still be here, despite these promised cures.  Maybe because I've moved into a brand new place but still have boxes marked "diabetes supplies."  As I unpacked, I reached the bottom of a bin of clothes and found a used test strip and I couldn't even tell what kind of meter it went it, it was so old, and that made me so sad for some reason.   

I tried on a few dresses in preparation for our trip to the Toronto Film Festival and felt upset that my post-pregnancy body still felt so unfamiliar, and that the pump seemed the size of a coffeemaker as I tried to hide it in my fancy garb.  Frustration mounted, and I felt like I was swallowing a scream.  I needed a hug. 

I went into my daughter's room, where she was asleep in her crib.  Her arms above her head, in her 'sleep victory' position.  Her breathing was even and steady, and she wrinkled her nose and rubbed her fist against her cheek as the floors yawned in response to my footsteps.  

Diabetes doesn't define me, but my daughter does. 

I scooped her up without thinking and held her close.  She cuddled close to me, resting her head against my neck and I stood there and felt ridiculous because I just wanted to cry, I was so proud of her.  And so in love with her.  And I realized that what had changed was everything.

Twenty four years with type 1 diabetes is a good chunk of time, but I'm not done yet.  It will be with me when we celebrate Chris's film next week, when we walk with our friends and family for a cure at the end of October, and when we have breakfast together tomorrow morning.

Diabetes is always there.  But it's not me.  It will never, ever be the core of me. Not if I have it for a 100 years.

24 years with diabetes

September 06, 2010

Diabetes Art Day: What If You Missed It?

Diabetes Art Day took place this past September 1st, and so many members of the diabetes online community tapped their inner artists for inspiration.  But what if you missed the day?  Can you still get your art on?

Visit Lee Ann's blog, The Butter Compartment, for more details on Diabetes Art Day and to view some of the submissions! And if you're looking for a labor of love this Labor Day, bust out your crayons (or your Photoshop) and see what you can create!

August 24, 2010

What is the Best Motivator?

I've heard that fear is a pretty good motivator.  Over my two plus decades with diabetes, I've heard the "fear tactic" from many medical professionals.  Actual statements:  "Make sure you test or your eyes will become diseased and you'll go blind." And "If you don't take care of yourself, you'll lose a leg when you're older."  And of course, "If you eat that, you'll end up with complications and then you'll have to live with that."  (see also:  ugh)

Fear has never been a good motivator for me.  When I'm scared, I have a tendency to hole up and hide.  When I think about the future of my diabetes, I know there is a good chance I will have some kind of complication. I have sat in the endocrinologist's office far too many times to tune out the threat of "what might happen."  I know what could be brewing.  Like it or not, I understand the effects of unmanaged diabetes.  I work hard to manage diabetes.  But I'm not so hot with managing the fear.

And if, for even a second, I forgot what diabetes complications may be waiting in the wings, I have many things to remind me.  Like the pamphlets at doctor's offices.  And the commercials on TV.  And videos about how diabetes can cost you a leg.  

That video makes me so frustrated because if I had seen it before the diabetes online community had bloomed, I would have been so distressed.  The images in that video would have haunted me, but not in a way that would impact my diabetes favorably.  That kind of video makes me want to stick my head in the sand and pretend it's not happening, instead of taking charge and control of my own disease and realizing I have the ability to impact my future health TODAY.

Give me hope any day.

I think it's more important to remember that there is a good chance I WON'T have some kind of diabetes-related complication. That some combination of good care and good support and good luck (yes, I think some of it is just plain luck) will usher me into my later years without a scary complication. Fear is not the best motivator for me - hope is far more effective.  I hope to be healthy for a long time.  And it's hope that keeps me testing my blood sugar every morning, working with my doctor to best-manage diabetes, and monitoring this monster closely. I don't want images of amputation flashing in front of my eyes every time I go to grab my meter.  I'd rather think about blowing out the candles on my 75th birthday party, a strong and healthy old bird.

Fear?  No thanks.  Give me hope any day.

August 05, 2010

BSparl and Her Mommy in Diabetes Forecast.

We both love purple.   Can you tell?Babies, babies, everywhere!  In particular, there are babies in this month's issue of Diabetes Forecast, with a focus on pre-existing diabetes and pregnancy.  I'm very proud that BSparl and I had the opportunity to share our story with the Forecast readers, and that the photographer who visited our home wasn't too bothered by the cat hair.

(One quick note after reading through the "Guide to Pregnancy" article in the magazine:  Diabetes is tough. We know that.  Diabetes and pregnancy is tough, amplified.  But don't let the long article about "what could happen" sway you if you are planning to pursue a pregnancy and you have diabetes.  The information in that article is important, accurate, but can admittedly be overwhelming.  Not all diabetic pregnancies encounter the same kinds of complications that mine did - everyone's experiences vary.  Just know that information overload comes with any pregnancy, and diabetic ones are no exception.  We may get some added bonus worries, but the end result of our pregnancies can be just the same as the pregnancies of non-diabetic women:  a healthy baby.  Take all of the information you read online in stride, including the stuff I've posted here.  It's a lot of hard work, but like they say, it's so, so worth it.)

And with that, I'm off to give the BSparl a snuggle.

July 21, 2010

Trends.

So here's a trend:  Today, I woke up to the sound of my baby cooing from her bassinet.  My hands reached over to the Dexcom receiver and I clicked on the button to light up the screen.  I saw a "74" and an arrow trending oh-so-slightly down.  So while Chris changed the baby, I went out to the kitchen to grab a swig of juice before settling in to breastfeed BSparl.  I fed her and then went into the living room to play with her.

Notice any problems here?  Anything ... oh, I don't know ... missing?  Like maybe a blood sugar check when I woke up?  Or at least one after I fed her?

Nope.  Nothing.  No test.  I went all the way from waking up to freaking NOON before busting out my meter.  This is a terrible trend.  And it's happened twice in the last four days.  I'm relying way too much on my Dexcom for guidance, instead of double-checking every hour or two with my meter.  I mean, missing a fasting blood sugar?  I've never, ever done that before.  Even in college, when I was at my diabetes worst, I still tested first thing every morning.

This is not a trend I want sticking.

I miss these little blue guys.  :)Here's another trend:  For the most part, I am BSparl's daytime friend.  During the day, Chris leaves our home office for a distraction and baby-free zone where he can focus on his writing.  So for several hours a day, BSparl is left to her mommy's devices.  (Including, but not limited to, visiting friends for lunch dates, running household errand-type things, and my own attempts to get work done.)   When I'm hanging with the baby, getting to the gym is impossible, and with the weather so hot and humid lately, I don't feel comfortable taking her for a walk in the stroller.  By the time Chris gets home, and we talk for a while, and we have dinner, etc. etc., it's suddenly so late that it's almost time for Colbert to come on.  (NATION!)  And I'm too exhausted to hit the gym.

This is not a trend I want sticking, either.  

A lot of the baby weight has come off (thank you, breastfeeding), but I am in desperate need of some muscle toning.  I need to get some workouts in as part of my schedule in a hurry, because I'm growing tired of feeling flumpy.  Before I got pregnant, I felt good about my body.  Now?  I need a little more effort to get back to fighting shape, or at least faux-fighting shape.  (Like the kind of fighting that includes throwing styrafoam peanuts.  Or something similar.)

The trends of missing blood sugar checks and workouts must end TODAY.  These habits are too damn crappy to let them continue.  I can't let these two trends wreck my goal of good health.  Small changes can make the biggest difference, so as of this moment, I'm realigned myself to test every morning and to get some exercise in at least four days a week.  (I was doing five days a week for years, so four days isn't a bad starting point.)  And it doesn't have to be a gym workout - I'll take anything from a long walk with the stroller and BSparl to an ellipmachine workout to a bike ride. 

Why am I rambling on about this?  Accountability, my friends.  By telling you, I'm setting myself up to be accountable for my actions (or lack of action).  It worked in helping me get my diabetes reigned in for pregnancy, and I hope accountability can help me get my act together to be a healthier mom.

July 13, 2010

Clara Barton Camp.

I love Clara Barton Camp.  I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds.  Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.

And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed.  Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).

When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs.  "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC.  Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.  

"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm.  But seriously, cabins having bathrooms is amazing.  My mind is blown."

Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes.  I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had.  And the audience with the highest percentage of diabetes!  According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis! 

The awesome staff members at Clara Barton Camp.

We all hung out in the dining hall and just chatted.  It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home).  They had a lot of questions about managing things like college, dating, and of course, the whole baby thing.  I tried to be as honest as I could be, toeing the line between "one of them" and "an adult."  Like when they asked me about drinking.  "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true.  But I can't lie and say that I didn't drink in college.  So here's what my experiences were like ..."

It was an incredible night.  These girls are a group for the entire diabetes community to be proud of.  Their energy, their endless smiles, their excitement for everything.  They took pictures (some goofy) and burst into song at the mere mention of the word "song."  (Video of a song about ketones coming at you ... now:)

Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there.  It sounds cheesy, but it's true.  CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay.  I asked some of the staff members to tell me what camp means to them.  Their responses were varied, but all hitting on the same general theme:

"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool.  The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."

But my favorite was when one staff member raised her hand and said, "It's the happy bubble.  This whole place makes me feel like I'm in a happy bubble."

Clara Barton Camp is definitely one, big happy bubble.  And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today.  Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt.  (And props to Savannah for rocking those mismatched galoshes!)

July 06, 2010

Finding Your Voice Online.

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.


I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bloggers at Friends for Life
Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

June 09, 2010

Broken Rules.

The rules are that diabetes has a whole list of complications that doctors repeat to us at every appointment, but none of us are actually supposed to get these complications.  No one is supposed to lose their vision or their kidneys or their legs. No one is supposed to lose their life.

We're supposed to have wild high blood sugars with ketones and glass after glass of water, sometimes culminating in an emergency room visit, but eventually we end up back in range and back at home, safe and sound.

We're supposed to have lows that stain the sheets with grape juice and render us unable to speak for ourselves, sometimes with the paramedics being called in to assist, but eventually we end up back in range, safe and sound.

We're supposed to trade stories about the tougher times with diabetes - when we have trouble finding places to hide our insulin pumps, when we're frustrated about pinging from low to high and back again, and when other people in our lives don't understand - but through the support from one another, the tough times aren't as tough, and we all see one another through.

The rules are that in this diabetes community, aside from supporting one another and sharing our lives, nothing bad is supposed to happen.  Things can get tricky and tough and challenging, but no one is supposed to get hurt.  In any way. 

Yet in the last few months, we've lost several loved ones, and most recently, we've lost a passionate diabetes advocate.  

It isn't fair.  They broke the rules.  These blogs about people with medical conditions, they are supposed to write candidly and bravely.  They are supposed to give a glimpse into what it's like to live with these diseases.  To live.  They are supposed to make you laugh and cry and feel for people you don't even know. 

It's been a tough year for the diabetes community.  We miss so many. 

Today is a good day to call your parents.  Give your child a hug.  Tell a friend how much they mean to you.  Send an email to someone just to say hi. (Even give the cats tuna fish as a special treat.) 

Today is one of those days when life feels so fragile, and every moment should be celebrated.  To quote Bennet, LY/MI.

May 26, 2010

Oxygen Mask.

Gotta wear mine before I can help BSparl.In the airplane safety manuals, they instruct you to, in the case of an emergency, put your oxygen mask on first, before assisting others with theirs.  Makes sense.  Can't help someone if you are in need of help, yourself.

Chris and I reference the "oxygen mask" all the time, mostly when I'm low.  During the course of the pregnancy, I had some wicked lows that kept me from attending conference calls, making it to dinner meetings, and even just meeting a friend out for coffee.  "I'm going to be late, but I need a few minutes.  Oxygen mask, you know?"  And Chris would nod, knowing that I was waiting until my blood sugar was stable before I headed out. 

But as I wrote about yesterday, I'm in the middle of The Suck.  Can't wrap my head around what I need to do in order to take care of myself, because I'm too overwhelmed with what my daughter needs.  The baby learning curve is pretty steep, and both Chris and I being schooled on just a few hours of sleep.  My baby is well-cared for, but my diabetes management has seen better days.

... so I guess my baby isn't as well-cared for as she could be.  Because I'm trying to put her oxygen mask on while fumbling with my own.  

Yesterday's post had some good ideas in the comments section, and I'm going to try and implement them going forward.  Like the testing suggestion.  I'm already testing my blood sugar before I feed the baby, so now I need to find other benchmarks in my day to assign testing to.  I'm working off a mental "even numbers" schedule today, making sure that I test at all the even hours.  I'm awake around 6:15 am every morning, so that means I get a 6 am fasting, and then a test every two hours. 

Some other things I simply need to make part of the routine.  So it becomes natural(ish).  Like the Dexcom.  That tool is extremely useful to me ... when I look at it.  For the last 11 days, I had a sensor in and the Dexcom was working great, but I wasn't looking at it.  The receiver would sit on the dining room table while I worked on my laptop and I'd barely pay it any mind.  Then, one night when it was pinging because I was high, I turned off the high alarm so that it wouldn't wake up BSparl.  Being the dingbat that I am, I left the high alarm off.  For four days. WTF?  What's the point of wearing the device when I'm not using it when I need it most?  Today, a new sensor goes on and I'm determined to reset the alarms and to actually use the data.  (Otherwise, what's the point?)

And then there's what Chris and I call "life stuff." Like remembering to call in my reorder for insulin to my mail order pharmacy.  And then remembering to pick it up from the mail drop.  Or remembering to throw a bottle of glucose tabs in my purse or the baby bag, or grabbing a back-up insulin pen, or making sure I have enough test strips in my meter case to get through the day.  Maintenance.  Life stuff. 

But I can't do all this stuff at once.  Baby steps, right?  Today, I'll start with testing more frequently and rearming myself with the Dexcom.  I threw a bottle of glucose tabs both into my purse and the baby bag this morning, and I called in my insulin reorder a few minutes ago.  New bottle of test strips is floating around in my purse.  Small changes that will hopefully make a big difference in how things roll out, diabetes-wise.  Because the better care I'm taking of myself, the better care I'm taking of the little BSparl baby.

Oxygen mask, you know?

May 25, 2010

The Suck.

Bright?  Not me these days.While motherhood is going well and I'm completely in love with my daughter, I'm reminded, daily, that diabetes doesn't care if I've slept or if I have carefully counted carbs or if I've just changed my infusion set.  Diabetes doesn't give a shit about my schedule.

It's The Suck.

Like last week, when at 4:30 am, my "alarm" went off - also known as BSparl starting to fuss and wail from her bassinet in our bedroom.  Not a problem.  I woke up, tested my blood sugar, and saw that I was 176 mg/dl.  That number (albeit spiky) works just fine for feedings, so BSparl and I spent some quality time hanging out, having an early snack, and debating where exactly the sun hides behind the trees before it starts to poke out.

We both went back to bed around 5:45 and slept until the next alarm went off - the Dexcom BEEEEEEEP!ing wildly at me at 8 am.

"Do not wake up the baby, you."  I grumbled while fumbling for the receiver on the bedside table.  "LOW.  Under 55 mg/dl" was the warning it was flashing up at me.  While BEEEEEEEPing.

"Shhhhhh!!"  I unzipped my meter case and deftly stuck a strip into the top of the machine.  I wasn't sweaty, my brain was functioning fine (aside from shushing inanimate objects), and I felt physical capable.  Maybe the Dexcom was just being finicky and throwing lower numbers?

"36 mg/dl"

Well shoot.  Not a whisper of a symptom, either.  I got up from the bed and wandered out to the kitchen, where Chris was making his protein shake.

"Can you keep an ear on the baby?  I'm 36 and just want to grab some juice," I said, opening the fridge door.

"Of course."  Pause.  "What?  You're 36??"

"Yeah.  No symptoms, dude.  Not even one."  I chugged a few sips of grape juice and put the bottle back in the fridge.  "I feel fine.  The Dexcom woke me up."

A blood sugar of 36 mg/dl without a single symptom, other than a wailing Dexcom and a bit of a groggy feeling.  But, in true diabetes form, once my blood sugar started to rise, I felt the symptoms acutely. 

"I feel pretty bad right now."  Shunk.  "Fifty-six.  Why do I feel worse at 56 than I did at 36?"

There's no rhyme or reason to diabetes.  The symptoms of lows and highs change with the seasons, it seems.  And they come without warning, these numbers.  Sometimes it's a hormonal or emotional surge that sends numbers pinging.  Other times, it's a little, teeny technical glitch that sends thing spinning.

Like two nights ago, when I bolused for a snack and felt a damp spot on the side of my shirt.

"What the ..." and I probed with my fingers and felt that telltale wetness around the gauze of my infusion set.  I tugged up the side of my shirt and gave the spot a sniff - yup, that bandaid smell.  Frigging infusion set was leaking some how.  No symptoms, though.  I wasn't thirsty, I wasn't lethargic, and I was actually just about to head off to the gym.  I felt pretty okay.  Problem was, I hadn't tested in about four hours, nor had I peeked at the Dexcom.  So basically, I didn't have a clue what was going on in my body. 

I tested my blood sugar and a 423 mg/dl grinned back at me.   

(Have I mentioned Yosemite Sam yet in this post?  Suffice to say, I rocketed through a list of curse words that would have caused Yosemite Sam to give me a frick-a-frakin' high five.)

New site, quick injection with an orange capped syringe from the fridge, a ketone test (negative), and an hour and a half later, I was down to 195 mg/dl.   But I was pissed.  Because during the course of my pregnancy, I maintained an A1C between 6.0% and 6.5% and I busted my butt to keep myself controlled.  But now, with my body reacting to adjusting levels of hormones and a serious lack of concentration due to a truncated sleep schedule (read:  no sleep 'til Brooklyn, with Brooklyn being college, I think), I'm all over the map. 

I'm frustrated with my control, or lack thereof.  Trying to figure out my post-pregnancy insulin needs and taking care of my little girl have become a full-time endeavor, and I'm not getting it completely done on either front.  I have to buckle down.  These epic lows and highs are not fun, and are wrecking havoc on my healing body. 

Next week, I'm back at Joslin to see my endo.  Diabetes needs to take center stage until I can get things under better control.  It's my priority.  I need to get back to logging, to testing every hour and a half or so during the day, to actually cooking meals instead of just snacking when time allows, to changing my infusion set when it's due, not when it's convenient. 

... after diaper changes, of course.  And breastfeeding.  And BSparl laundry.  And pediatrician appointments.  And 3 am feedings.  And that occasional moment when I lock the bathroom door and look at myself in the mirror with determination and say, "Get it together, Mommy."  

April 16, 2010

Looking Back: Between Dinner and a Movie.

I didn't appreciate everything my parents did for me as I grew up with diabetes, but hindsight being 20/20, I definitely have an appreciation now for their hard work and dedication to not only my health, but keeping the family's routine as "normal" as possible.  And now that I have a child of my own, that appreciation is deeper than I thought possible. 

This post ran here last summer, and I still mean every word.  (Including the bit about the alligators in the carpet.  I know my brother and sister and I weren't the only ones who avoided them!) 

*   *   *

Saturday nights when we were very small were the best. 

We made blanket forts and used every damn cushion in the couch.  Laying pillows on the floor, we'd jump from down-filled island to island, pretending that the carpet was infested with alligators and only by balancing on the pillows would we be safe.

The babysitter always promised to make healthy dinner, but usually we ate popcorn, chicken fingers, and drank diet soda by the bottle, filling the glasses to the very brim and frantically slurping the carbonated foam awayI loved this doll.  I even pretended she had diabetes.  Which is a  bit odd. before it could spill over.

My favorite babysitters were the ones who played with us, not just sat there and talked with their boyfriends on the phone.  Carolyn was my favorite one of all and I named my Cabbage Patch doll after her that year.  She was pretty and smart and the characters she pretended to be were so clever.  She was the perfect example, to me at seven years old, of what a 'hero' really was.

My parents had a standing Saturday night "date night," and they would go out to dinner either alone or with some friends, then maybe to a movie.  Usually they left when it was still light out, while we were still outside playing in the yard or just coming in to have a snack.  My brother and sister and I played and fought and made messes and told stories and generally destroyed the house, like little kids do.

Only now, when my memory is jogged, do I remember the headlights pulling back in the driveway, between when dinner ended and the movie began. 

Dad would wait in the car while Mom ran in quickly to test me and give me my bedtime insulin injection.  Then she'd say goodnight to all of us and run back out to the car to continue "date night."

Only now do I remember those moments and wish I'd named "Carolyn" after my mother, instead.

April 02, 2010

Day Seven in Captivity.

Little on the down side today, thanks to having just marked one week "in" and with still two to go.  What the hell is there to write about, from the mind-numbing confines of my hospital bed?

At the moment, BSparl and I are hooked up to the fetal monitoring system, and I can hear her heartbeat pumping along like a rhythmic Clydesdale and can see the movements of her little 5lb, 5oz body being tracked on the graph.  It looks almost seismic, like a BSparl earthquake.  


They haven't checked the protein levels in my urine in a day or two, but things appear to be holding steady.  Blood pressure is climbing ever-so-slightly, but monitored constantly, and there's room for titration in my Labetalol medication (read:  they can give me more of that crap).  Still rockin' the heparin injections twice a day (hate) and still not sleeping through the night thanks to the monitoring.  (Which I understand the necessity of, but it's not making for "relaxing bed rest."  Bed rest is a misnomer.  This is more like jail where the wardens grin and mean well.)

One of the hurdles I'm having a little trouble with is the diabetes management aspect of things.  The Joslin team comes by once a day to review blood sugars and make suggestions, and they are the experts in all-things diabetes.  However, I am the expert in all things specific to MY diabetes, so I've been working hard to achieve a tolerable blend there.

For example, one of the (very nice, very knowledgeable, mind you) endocrinologists had some commentary about a post-prandial blood sugar of 137 mg/dl that I had two days ago.  In my mind, 137 mg/dl an hour after eating is downright badass, and I'm very happy with it, especially considering that the pre-meal number was 84 mg/dl.  Good control, in my eyes.  

"Well, this is a little high.  We'd like to get this post down."

I don't mean to be rude.  I try to be a good patient, a "patient" patient, and to find that careful blend I had mentioned, the one of my non-medical knowledge and their medical knowledge of diabetes.  But it was 8 in the morning.  And it was the third time I had been woken up by a doctor who wanted to review my goods.  And I didn't agree that 137 mg/dl post-prandial was too high.

"Really?  Too high?  I don't see it that way.  I think that's a number to aim for, especially seeing as how I leveled out to 98 mg/dl at the two hour mark.  That's a respectable peak, don't you think?  Otherwise, I'd be treating a low at the two hour mark."

"Yes, but it should be lower than that."

And I sort of lost my cool.  

"Okay, well how about we all call the FDA and get them to tighten up their requirements for 'what's accurate' to something a little more precise than 20%, and then we can start griping about a 137.  Because for all we know, that 137 mg/dl could actually have been a 110 mg/dl, and then I'm right in the acceptable range, right?"

(I am Kerri's terrible, bedrest-fueled, pregnant rage.)

They agreed that 137 was okay.  And that revisiting my post-prandials after another day of review would be a good idea.  And then the fleet of them shuffled out the door.  I felt bad about blowing off steam, but really - I'm in no way a "perfect diabetic," but these days, I'm running really tight and carefully with my numbers.  Let's remember that the reason I'm having post-prandial peaks is because - oh yeah - I have diabetes?

It's challenging, that feeling of having people take my diabetes management control away from me.  Not that I have all the answers or have it all figured out, but I've been living with this a long time and my own instincts and experience should be as strongly considered as the vast medical knowledge of my new, trusted caregivers here.  I'm no diabetes expert, but I'm pretty well-versed when it comes to "Kerri."  ;)

Eventually, I'll find a way to balance my issues with control while "in captivity," but until then, I may need to vent here a bit.  Because I'm pretty sure they're not reading me. 

... Whoops.

March 03, 2010

Tough Questions.

A few nights ago, I had the opportunity to co-host a webinar for WEGO Health with Janis Rozsler (who literally wrote the books on handling diabetes and chronic illness).  It was a really cool discussion, and even though I have diabetes and Janis's expertise is in the field of diabetes, the talking points were applicable to more than just this one disease.

But since type 1 diabetes is what I'm most familiar with, and I couldn't help but spin every question in relation to my own health condition.  This question, in particular, threw me:

Asking the tough questions about diabetes and relationships.

I get a lot of questions from blog readers.  (I ask a lot, too.)  Lots from family members.  Some from new friends, some from old buddies.  Some from people I've dated in the past.  And so many from Chris, as we learned about one another and planned for our future together.

The toughest question I've had to answer about diabetes is very direct, and completely innocent.  I've been asked this question over and over again, and have sometimes even asked it of myself.

"Will you be okay?"

It's such a simple question, but I know the words that are missing from the beginning and the end.  "You have diabetes ... will you be okay?  Or will you have complications?"

There are days when I'm certain of the answer.  "I'll be fine.  I'm working hard - I'll be just fine."  These are the days when I'm having a decent run on the Dexcom graph, and the average on my machine is under 120 mg/dl, and I'm feeling strong.  When I feel like diabetes is on the peripheral, and not the focus.

Other days?  Seems like the answer should be "Nope."  Those are the days when I'm screwing up every carb count, when my numbers are pinging from one end of the spectrum to the other without spending even 15 minutes 'in range,' and when I feel whipped by what this disease requires, physically and mentally.

I can do so much to protect my body from this disease.  I can test my blood sugar all day long, and really try hard to immediately correct the highs and quickly treat the lows.  I can keep a good attitude about things and realize that while my diabetes isn't completely in my control, my attitude can be, for the most part. 

But I'm never sure, and I hate when my brain starts to think too much about my control of the future.  I've written before about how diabetes complications are from diabetes, not from my lack of or emphasis on effort.  It comes down to us doing our best, our very best, to stay on top of our physical health as we remain tuned in to our mental health.  The last few weeks, with such a heavy focus on my diabetes management and with every breath (mine and my baby's) being tracked by my medical team, I'm hitting a level of burnout that I've never felt before.  I'm trying to stay focused on the end result - holding the baby!! - and that helps keep me grounded for a few more days.  I am pretty damn sure I'll be okay, overall, and even if my body has some physical hiccups as I spend more and more time with type 1 diabetes, I'm hopeful that a good attitude will see me through the tougher times.

"Will you be okay?"

Sometimes I just have to shrug and say what's really in my heart:  "I hope so."  And then a grin.  "I plan on it."

March 02, 2010

Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

February 25, 2010

Free Shower.

I love "free shower" - which, if you're diabetic and using an insulin pump or a CGM, you know that means "the shower when you're changing sites and you don't have any hubs connected to you."

It's nice to lather up and not worry about catching on an infusion set or a sensor edge.  Thing is, this is what's waiting for me when I'm done getting all cleaned up:

Oh I love me some free shower.
The potlock o' diabetes crap

Yesterday was "free shower" day for me, which is a rarity now that I'm wearing two devices.  The chances of an insulin pump change synching up with a Dexcom sensor change are pretty low, so when I'm swapping both, it's particularly nice.  And this scene on the bathroom counter is what needs to be reapplied after the fact.

That's the potluck of diabetes devices:  the Dexcom sensor, transmitter, and receiver, and then the insulin pump, infusion set, cartridge, and little bits associated with pump site changes (like that all-important insulin).   If you look fast, you can almost fool yourself into thinking it's a photo of make-up stuff, like any lady would have on her bathroom counter.  But the Sparlings don't have a "powder room," - we have a "site change room." 

I'm adjusting, though.  Don't we all?  Back when I first started pumping, I was freaked out about the whole "external symptom" because I'd existed 17 years without one.  Popping in those first infusion sets and clipping on the pump was a very surreal experience, and one that it took me some time to get used to.  ("Do I look like a robot?  Not really, but sort of.  Am I okay with looking a little like a robot?  Do I get special powers?  No?  That's only super heroes?  Okay, well what do robots get?  They're maids on the Jetsons?  WTF?"  The internal monologue was constant back in those days.)  Adding in the Dexcom sensor and receiver sent me back into that "Wait a minute ... I'm now like a SuperRobot!" mode. 

But now, it's been six years with a pump.  And almost two and a half years with the Dexcom.  So while free showers are nice and I like that feeling of not having anything attached, once I put on the new sensor and the fresh infusion set, I still felt fine.  The sites don't look so scary anymore. 

They look ... almost right.

(Note:  But it may be the ever-growing belly that's making things look more proportionate lately.  Ask me in eight weeks. :) )

February 19, 2010

It's All Rainbows and Unicorns.

I love BSparl.  I love her little feet and her pouty lips and that feeling I get when she rolls around inside of me.  I love knowing that my daughter is just a few weeks away from becoming a part of our Sparling family, and I know that every moment of this pregnancy is completely worth every iota of effort and worry.

That being said ...Rainbow not included.

I'm starting to lose my mind a little bit.

I've blogged about the details of the doctor's appointments, and the ultrasound scans, and the way that diabetes has impacted my pregnancy, and vice versa.  But by the end of my posts, I feel better having purged the feelings and worry.  And I want to reassure women who have type 1 diabetes that a pregnancy is possible, and enjoyable, and like they all say - so, so worth it.

But, like I said, I'm starting to crack a bit.  On Tuesday, I'll be at 30 weeks, seven and a half months pregnant with just under nine weeks left to go.  And these last few weeks have been ... well, not exactly rainbows and unicorns.

  • Like last week, when a string of 200's had me bump my basal so high, on the heels of amped up nerves, that I overdid it and ended up with two 50 mg/dl's in the middle of the night.
  • Or on Monday, when a carefully measured breakfast and a carefully calculated bolus, delivered 45 minutes before the meal, sent my blood sugars rocketing up to 248 mg/dl and held there for two hours.  
  • Or the other day, when i realized that pregnancy is actually ten months long, not nine.  Damn lunar months, and why the hell didn't someone give me a head's up about that?
  • Or that yesterday, Joslin gave me the run down on the rest of my appointments that are scheduled.  There are 20 of them.  I don't understand how people manage a high risk pregnancy and keep their jobs. 
  • Or that next week, I'm having the eye dilation that will determine BSparl's method of arrival, and I'm really nervous about it.  I'm nervous about vaginal birth or c-section.  Doesn't matter.  Just "giving birth" has my stomach twisty.
  • Or the fact that I'm craving carbs (nasty carbs, like cheeseburgers and chicken nuggets and pastries) and am having a very hard time not caving to these cravings.  I can't have anything even close to a sleeve of Ritz crackers in the house or they will disappear within a day's time.  I'm ravenous for these rotten carbs, and I've crocheted three scarves in efforts to curb the cravings.
  • Or that every time my numbers are out of range, I want to hold her little hands and tell her I'm sorry.
  • Or yesterday, when a perfect Dexcom flatline overnight was shaken by a cheese stick and a cup of decaf tea, leaving me with a blood sugar of 350 mg/dl and on the cusp of a panic attack.  What does this do to my baby?  Is she okay when I'm spending an hour over 300 mg/dl, without much food at all in my system?  Does she hurt when I am chugging water and stressing out but trying to control my emotions because I want her little womb to be serene and calm, not the spin cycle of diabetes chaos that I am so good at tossing her into lately?

Diabetics have healthy babies all the time.  I know this.  I've read this, others have proven this, and I hope to write those words myself in a few weeks.  But honestly, the mental part of pregnancy is more than I was prepared to deal with.  The guilt of every blood sugar and every miscalculation makes my heart ache, and I have found myself praying more in the last seven months than I ever have the thirty years before. 

I want to paint that "rainbows and unicorns" picture for you guys.  I want to make pregnancy seem like it's the most beautiful thing on the planet and even a person with type 1 diabetes can see the nine (ten?!) months through safely.  But as my delivery date draws closer, I'm not sure.  And I'm scared.  And I feel stupid because I have zero control over my emotions these days, leaving plenty of tears in my wake. (I've become a mega-wuss.)

Ugh, downer of a post.  I really can't wait to have the baby, but I know that part of why I want her out is because I believe she'll be safer once she's in the world and outside of me.  I know that Chris and I can take care of her, as parents, and keep her as safe as any other couple who loves their child.  It's the whole "now" process that has me in knots, wondering if I'm taking good care of her now.  I want the absolute best for my daughter, and I feel so guilty because I know that my body creates a challenge in some ways.

Just a few more weeks.  Every test, every infusion set change, every moment of blood work, every doctor's appointment, every time I pay the co-pay or the parking garage fee, every refilled prescription, every new CGM sensor, every curbed craving ... everything.  Everything is worth it if I can get to the end of this and have her out, safely. 

And then she and I will get matching mommy and daughter tattoos - hers a rainbow, and mine a unicorn.

(Note to people who may think I've completely lost my mind:  Kidding about the tattoos.  But I might buy her a t-shirt.)

February 18, 2010

Guest Post: Pilgrimage.

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

*   *   *

Pilgrimage

Steve from Without EnvyShortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

*   *   *

Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

February 12, 2010

Diabetic Mommy.

I opened this gift that arrived in the mail, and almost burst into tears because I hope, hope, hope this is the case for my daughter.

Thank you, Lindsay!  For making me feel like I'm going to be a good "diabetic mommy."
(This photo is also part of today's Diabetes 365)

I was thinking about how much planning and effort has gone into this pregnancy, from a diabetes perspective - never mind the regular gearing up that parents-in-training go through.  Chris and I have worked very hard, as a team, to manage my diabetes in efforts to get pregnant, and now that BSparl is in there baking cookies (or whatever it is she does all day), diabetes focus has turned up even higher in our household.

I'm blowing through test strips like a champ, wearing the Dexcom to help me keep track of the constantly-changing numbers, using an insulin pump, trying hard to eat healthy (even though I'm currently weighing the pros and cons of a red velvet cheesecake - recipe link courtesy of my friend Elizabeth Arnold), and making feeble attempts to get a workout in here and there.  Managing diabetes has become, seriously, a full-time job as my pregnancy rockets into the third trimester.

But I wonder what she'll think when she arrives.  And how much things will change.  Will she understand when I need to eat before she does, sometimes?  Will she feel upset if I need a few minutes to get myself together before I'm able to play with her?  Will she think I'm cramping her diaper bag style if I shove my meter in there, alongside her wipes and her binky?  Will she wonder what's wrong with my priorities when I refuse to share my juice box with her on our future playground dates?

Will she understand that even though that t-shirt will only fit her for a few weeks and she may not even remember it, but will she know that her diabetic mommy loves her, and has loved her since the moment she knew she carried her?

(And will she forgive her for all the third-person dialog?  Maybe not.)

I'm heading to Joslin again today, for the first of my four seven-months-pregnant appointments.  Chris and I will see our baby girl through the magic of ultrasounds, and then I'll meet with my endocrinologist to discuss how my body is soaking up insulin like a sponge.  Just a few more months until she's here, in our house, in our arms.

Baby girl, I hope you know how loved you are.

(This is part of a gift from my friend Lindsay, who I've never actually met in person, but I feel like I know, though emails and Facebook and blogging.  Thank you again, Lindsay, for such a thoughtful gift!  BSparl says thanks, too, only I can't really hear here because she's muffled by my enormous uterus.  And potentially the sound of the oven *ding* as her cookies bake.  Who knows?)

February 04, 2010

What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

January 22, 2010

Looking Back: Rage Bolus, Anyone?

Today, we're traveling to Utah for the Sundance Film Festival.  And yes, I will be photographing and videoing the hell out of the festival, because I am so excited to see how this week plays out for my husband.  But in the meantime, as I board the plane and head off to Park City, I'm looking back to this post from October 2005, where the term "rage bolus" first appeared on SUM

(It made me laugh to read this post, because this was pre-dLife, pre-Chris and I getting married, and pre-so much stuff that's in play right now that I almost forgot that I hated my job back when I lived in RI.  And how much I still want to know how many licks it takes to get to the center of a Tootsie Roll pop.)

*   *   *

October 10, 2005:  Bit of a rantish post here. And there's no reason for this other than to vent frustration.

Last night, after I came home from the U2 show in Boston (more on that later), I was a little bit high. Rang in at 212 mg/dl. Okay, no problem. Bolus it up, go to bed. Woke up this morning at 200 mg/dl. Hmmm, no drop in the blood sugar levels. Not to worry, though, because it's a Free Shower - no infusion set - Day due to the fact that it's time to change the infusion set. Primed and inserted a new set with good ol' Charlene. She purred (beeped?) happily and I set about dressing for work.

RAGE BOLUS!!

Arrived at work. Hungry. Devoured one of those sometimes-delicious-but-most-often-just-gritty Kashi Whole Grain Granola bars. Bolused two units to cover, in accordance with the 1:10 ratio. Worked at my boring job for about an hour before realizing that I had already visited the bathroom twice in that time. Hmmm. Not normal. Tested, revealing 281 mg/dl. Whaaaa... I corrected this morning. I bolused for the crappy snack. And now I'm higher than before? Frustrated Kerri. So I Rage Bolus*. I just crank the shit out the pump, knowing full well that I only need about two units to come back down. I lace in 3.5 units. Sit back, satisfied.

Not done yet. I test again, an hour and half later, clocking in at 286 mg/dl. Fan-freaking-tastic. Good thing all that insulin made me higher. Because that makes f-ing sense. So I Rage Bolus again, sending 2 more units coursing through, Frustrated Kerri not really giving a shit that the "active insulin" tally on my pump is enough to cover dinner at Olive Garden.

So it's noon. I've been high all morning. I just changed my infusion set this morning. And I'm angry. I do not want to pull this set only to find that it's perfectly fine and I've wasted yet another expensive pump supply.

I'm riding this out. It's Me against the D. Who will persevere? How high will Kerri allow herself to rise before she pulls the set and starts over? How much Rage Bolusing will eventually catch up with Herself before Kerri bottoms out at 44 mg/dl? How many licks does it indeed take to reach the center of a Tootsie Roll Tootsie Pop? If you say three, you and that f-ing owl can go screw. It at least takes 125. I'm going to find out as soon as my Rage Bolusing catches up with me and I'm Trick or Treating at people's desks here at work.

*Rage Bolusing: Taking an uncalculated amount of insulin to correct a frustrating high bloodsugar reading. Also see: Panic Eating.

January 17, 2010

BSparl Fights Back.

Last Friday, Chris and I were back up at the hospital for another round of doctor's appointments to spy on Ms. BSparl.  (This might be another long post, because I'm trying to include everything we're doing for this pregnancy, just in case someone else is looking for this info.  So thanks for bearing with me!)

Fetal Echocardiogram No. 2:  We started with a follow-up echocardiogram appointment at Children's Hospital in Boston, because last time we tried to see the structures of our little girl's heart, she was hiding out too low in her little uterine apartment to be properly found. This time, a full month later, she's over a pound and a half, and the size of an eggplant.  So hiding is a little harder.

The babies of type 1 diabetics aren't prone to every kind of complication, but are instead screened for everything under the sun, just to make sure.  The ultrasound technicians were looking for problems with BSparl's heart - ranging from a floppy valve to flow problems between the atria and ventricles, checking out the umbilical cord blood flow, too.  

"She not much of a cooperator, is she?"  the technician asked, pressing the ultrasound wand firmly against the left side of my uterus. 

"I guess not.  Bit of a shy one." 

(I love this kid already!! /sidenote)

"Well she can run, but she can't hide.  We're going to get these pictures today, whether she likes it or not."

The technician visually isolated BSparl's beating heart, looking at every chamber and pulse to make sure she was in one piece.  But as the technician worked to get the ultrasound images she needed, she was pressing pretty damn hard against me ... and against BSparl.

"Almost done.  Just one more image to capture.  You doing okay, Kerri?"

"No problem.  But I think our friend here is ... ooof!  Um, she's not very happy with you."

And when I looked down, I could see the baby kicking and fussing on my right side as the technician pressed the wand against my left.  Big kicks, clearly visible to Chris, who was sitting in a chair on my left.  BSparl was pissed - she didn't enjoy being bothered while she was trying to sleep during the day, apparently.

'Fiesty one, eh?"

I felt a little proud.

"Yes, she is."

(I guess if you poke at my kid, she fights back.  I like that.) 

The fetal echocardiogram came back without any red flags, so thankfully her little heart seems to be okay in there. 

Some orange flowers.  Not diabetes-related, but I thought they'd break up this long, boring post a bit.

OB/GYN: 
After that appointment, we had a quick visit with my OB/GYN who took some measurements of BSparl to see how big she's getting in there.

"Looks like she's about one pound, 12 oz.  She's right on track, so nothing to worry about with her size at this point."

I was relieved.  "I'm glad you're saying that, because I've had some really tough blood sugars these past 2 1/2 weeks.  I was afraid she was beefing up in there."

"No, she's in the 61st percentile, and we aren't going to worry about anything until she's in the 75th.  We're going to watch you to make sure she doesn't get too, too big in there, but at this point, she's doing just fine.  And so are you."

She printed some ultrasound photos for us (which will go into the baby scrapbook I've started but definitely need to catch up on) and then I met with my endocrinologist about my blood sugars.

Endocrinologist:  I am very, very thankful that I have a comfortable relationship with my endocrinologist, because the emotional toll of diabetes has really affected my ability enjoy being pregnant.  I've had some highs that wouldn't go away, and plenty of unexplained blood sugars that have made me feel so frustrated over the last few weeks.  I'm pretty sure my A1C will be up again this month (hopefully still under 6.5%) but I needed help fixing some of it.  And I also needed to be told that what's happening to me is normal.

"I'm high.  Like, crazy high, sometimes first thing in the morning.  And other times, I can't make my post-prandials come down under 160 mg/dl for at least two hours, no matter what I do.  Is this normal?  Is it normal for me to be experiencing such wild insulin increases at this point?  And is it normal for me to be sort of losing my mind at this part in the pregnancy, too?"

She assured me that this is the point in pregnancy when the placenta does, in fact, produce anti-insulin hormones, causing my numbers to elevates and my need for more insulin.  

"Anti-insulin hormones?  That's cruel.  Cruel irony."

She smiled as she worked to adjust my basal rates (now up to almost 20 full units of Humalog per day, in addition to bumping my insulin to carb ratio down to 1:8).  

"You're doing fine.  And you've been adjusting your own basals and going after these highs, so that's the right thing to do.  We just don't want you chasing.  I want to help prevent them in the first place."

I could have hugged her.

"Me, too.  I want to make sure she's safe in there.  I don't want to hurt her in any way, and the recent highs have me freaking out a lot."

"Don't freak out.  Just keep doing what you're doing.  Follow those numbers, stay as controlled as you can, and fax me any blood sugars that have you concerned.  I can review the changes you're making, or I can make changes for you from here.  Either way, we'll get her out just fine."

Building this baby is tough work, and these days, I feel like a full-time diabetic.  This baby, and by default, diabetes management, is my top priority and I am focused on keeping her as safe as I can.  But as my body changes and my insulin needs become less and less predictable, it's getting tougher to stay in good control.  And in solid spirits.

We're almost at the end of the second trimester.  Third trimester starts on February 8th, and after that, it's a fast track towards her arrival.  This is happening really fast.  We actually started registering for baby stuff this past weekend - holy crap.  Emotionally, I'm overwhelmed and excited and scared and trying to figure out how to just slow things down for even a day.

(More on that tomorrow, once I wrap my head around the whole concept.  For now, I need to go make some pancakes.)

January 04, 2010

Oh, High!

I hope BSparl is going okay in there.Back at the Diabetes 2.0 conference in Florida in November, I was talking to Manny Hernandez about how evenly  my numbers were running due to the pregnancy.

"Dude, it's like a cure.  It's creeping me right out, but I am NOT complaining.  Whatever keeps this baby safest!"

Oh how I wish that was still the case.

The lows chased me all around the house for about five months, helping my A1C drop like a rock and keeping highs out of the rotation for approximately twenty weeks.  A blood sugar of 150 mg/dl felt HIGH (which was a far cry from the 250's I was sadly bonding with this time last year) and my low symptoms weren't kicking in at all (see also:  the 29 mg/dl without a whisper of a hint). 

Tomorrow I'll be in the 23rd week of my pregnancy, and the highs are back.  With a freaking vengeance. 

It started innocently enough - with some spiky numbers in the middle of the night.  Nothing chaotic, but 120's where there were 80's the day before, and they continued to climb a bit every day.  For about four days straight, I was waking up at 4:30 in the morning between 120 - 140 mg/dl, correcting back down to 100 mg/dl, and then the creeping would start again around 10 am.  It was like my body wanted to incubate BSparl at a steady blood sugar of ... 180?  NO WAY. 

After a quick chat with my endocrinologist (who told me, in no uncertain terms:  "Pregnancy is completely different.  Two days is a pattern now.  You know what you're doing - adjust your basals as often as needed."), I starting hiking up my basal rates.  Before I got pregnant, my total daily dosage was around 24u per day, thanks to a low basal rate and a lower-carbohydrate diet.  Now?  Five months and 3 weeks into my pregnancy and 17 lbs heavier?  My TDD is 45u and climbing. 

I am wearing my Dexcom and testing very regularly, but it seems like full-out stalking is necessary for the next four months.  I'm also changing my insulin pump infusion set every three days, like clockwork, to keep absorption issues from adding to the pile of variables.  What's becoming challenging is avoiding basal stacking.  As in, if I'm 140 mg/dl and I bolus it down, I need to be patient and let the insulin do its work.  I can't freak out and take another bolus 35 minutes later just because I'm nervous.  Bolus stacking (and rage bolusing, too) are totally counterproductive when they result in a nasty low blood sugar that leaves me spinning.

So what's the moral of this story?  ... honestly, I have no idea.  All I know is that blood sugar management during pregnancy just went from literal cakewalk (as in, I'd take a step and would require cake to take another step) to a struggle that has me acting like an emotional wreck.  My last A1C came in a little higher than the one the month before (went from 6.1% back up to 6.3%), and I know this is because the lows are tapering.  But I don't want to crest back up towards 7% because I'm unable to wrangle in these stupid highs.  

There's a lot of guilt when it comes to diabetes.  I knew that before.  But what I didn't realize before becoming pregnant is how much I worry about this little baby while she's growing inside of me.  Every time I test and see a number above 130 mg/dl, I feel so sad and frustrated.  My hands immediately go to my belly and I want to feel her kicking, because that at least soothes my heart, knowing she's still okay in there.

Actually, she's rolling around in there as I type this.  My blood sugar is 96 mg/dl and holding, I hope.  I have every confidence that I can do this and that she and I will be okay, but these last few days have been really emotionally tough, and I've found myself praying more now than I ever have before.

(Thank goodness for cute baby girl clip art.)

December 15, 2009

BSparl: 20 Weeks.

Dear Baby,

Daddy and I are at the halfway point in our journey to meeting you, and I'll admit - I'm a little surprised at how quickly this is happening.  I feel like I was just in Spain, hoping you were there with us, and then just at Joslin, wondering if they were going to tell us you were indeed hidden inside of me.

Baby, we know you are a little girl, and that every week, different parts of you progress in their development.  Daddy and I read through those books we bought and marvel at what's actually happening inside, when my outside just looks bulgy.  "She can hear us now!"  "She'll start kicking any day."  "Will we catch her sucking her thumb in the next ultrasound?" "Does she realize I don't know the lyrics to ANY songs, not even Christmas ones?"

Baby Girl Sparling, 20 weeks

And I've felt pretty healthy, Baby.  I am about 13 lbs heavier and wearing maternity clothes now (you'll see them when you're born - the crazy pants with the elastic waist bands that everyone was jealous of at Thanksgiving?), but a lot of the "pregnancy woes" aren't part of our lives yet.  Like heartburn.  And stretch marks (yet).  Just some back pain and I feel pretty tired a lot of the time.  Heating pads and naps work wonders these days. 

But Baby, I get very nervous about things that other people don't know about.  The stuff that isn't mentioned on the "What to Expect" websites.  We visit the doctor every two weeks, and I'm being followed very closely by my medical team, but sometimes my mind gets panicked about how capable my body is of taking the best care of you.  I can't lie - I know that diabetic women have healthy babies all the time, but Baby, when my blood sugars ring in at 200 mg/dl after a meal, no matter how carefully I've counted carbs and bolused insulin, I'm terrified that I'm hurting you.  Or this morning, when I woke up at 135 mg/dl at 7 am, I felt a pit in my stomach because I know that it's best for me to be under 100 mg/dl first thing.   I wonder, when the infusion set really stung yesterday morning upon inserting it, do you feel that pain?  Is it normal to worry about every little thing when it comes to your well-being?

Of course it is, moms and dads who have done this before will tell me.  It's completely normal for me to want the very best for you and to hope and pray for your good health and safety.  And it's also completely normal for me to worry about every little thing.  But what I worry most about are the things I am scared to talk about.  The things like blood sugars and hypertension and diabetes-related complications for you and I alike, that other people in my life think I have figured out but I just don't know how to do it right every day.  And the idea of doing it "wrong" makes my breath catch in my throat.  My numbers seem "good enough" and my A1C is lower than it's ever been, but those 200's that are creeping back in at at times terrify me.  So does the 31 mg/dl in the middle of the night.  And so does every single thing that threatens to affect you in any way.  Will I keep you safe enough? 

Diabetes is the shifting sand I'm trying to build my life on, and I can handle my being affected, but I don't want it to touch you.  Not even for a moment.

I love you endlessly, Baby.  I'm so grateful to even be this far, and I appreciate every moment I have with you, and will have with you in the future.  Don't worry, Baby.  I'm not spending every minute of our pregnancy in a panic.  It's just sometimes I feel so scared that I'm not able to provide to you everything that you deserve.  I'm very protective of you already, and I want to be a good mom to you.  When I feel you kicking around inside of me, I know you are exactly what I've always wanted.  You are a new life that your father and I created together, and I hope that I can give to you even an ounce of the joy you've already given to me in the last five months. 

I can't wait to meet you, and hold you, and know that you're okay.

Love,
Your Mommy

December 06, 2009

Looking Back: The Boy at the Health Fair.

Today, I'm revisiting a post from 2006 (writing that makes me realize I've been blogging for a while now!), when I met a little boy at a Rhode Island JDRF event who warmed my heart - which I needed on this snowy, New England morning. ;)

*   *   *

I'd guess about ten years old.  Spikey blonde hair, pale blue eyes, chubby little kid face.

His mother stopped by the table we were manning at the School Health Fair, mussing with the pamphlets strewn about the blue plastic tablecloth.  The tri-fold cardboard display announced "Juvenile Diabetes Research Foundation" in bright blue letters.  Myself and another volunteer from the RI JDRF stood vigil at the table, handing out trinkets and informational packets, answering questions, and enjoying the sights.

"Hey buddy.  Would you like a t-shirt?"  My fellow volunteer leaned in towards the little blonde boy.

"Sure.  Thanks."  Shy blue eyes.

Turning to the mother, my partner asked, "Does anyone in your family have diabetes?"

She waved a green sweatshirt clad sleeve at her son.  "Yeah!  He does!  He has diabetes."

He looked at the floor and contemplated his untied sneaker. 

His mother laughed loudly and clapped him on the back.  "Some days he talks about it and some days he doesn't.  Today he just ain't talking!"  She picked up an issue of Countdown Magazine and flipped through the pages.Lost in the Crowd

"Here's your t-shirt."  Pale blue eyes met my own.  "I have diabetes, too, you know."

"Really?"

"Yeah.  I have an insulin pump."  I pointed to the pump clipped inside the pocket of my khaki skirt.  "I've had diabetes since I was about six."

"I've had it since I was seven."  He smiled and fingered the plastic sleeve around the blue JDRF bracelet.  "It's okay... so you have it, too."  He looked at all the other volunteers at the other booths. 

After a beat:  " You look just like the rest of them."

I stood there after he and his mother walked away, toting plastic bags filled with health fair goodies and JDRF magnets and pamphlets on bloodsugar management.   His blonde head blended in with those of the other kids until I couldn't find him in the crowd anymore.

He looked just like the rest of them.

November 30, 2009

A Piece of Embarrassment Pie.

Diabetes police - :(Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police - people who don't mean to be second-guessing me or asking me why I'm eating that, but still, they can't help but ask.  Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.

But other times, when I'm at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, "Why are you eating that?" ... I feel completely defeated.  And embarrassed.  Can't a girl have dessert without being questioned?  And when questioned, why isn't my explanation good enough to justify my actions? 

I'd like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny.

There's a difference, in my eyes, between choosing to be a diabetes advocate and being forced to explain myself.  I have no problem explaining to a stranger what the difference between type 1 and type 2 diabetes is, or what this machine on my hip is, or why my purse keeps BEEEEEEP!ing, or why I'm carrying more candy than an Oompa Loompa.  I actually like having these discussions, because I feel like people are only familiar with one kind of diabetes and one linear explanation for "the sugar," and I like knowing that I'm helping to educate them about the different kinds of diabetes, particularly type 1. 

What I don't enjoy is having someone look at me like I'm doing something wrong, just because they are unfamiliar with the ways that my diabetes needs to be managed (or the way I'm choosing to manage it).  I've written about diabetes and guilt before, and my inability to ever be "the perfect diabetic," so this isn't a new gripe.  But what's made me particularly frustrated is how there seems to be this common misconception that "it's only diabetes" and it's okay to pass judgment on my choices.  Diabetes isn't viewed as a serious disease to those outside the bubble of understanding, and complications for a young person with type 1 can thankfully be hard to spot, so maybe diabetes just looks too easy to some people.  Maybe we are just too good at masking how challenging it can be sometimes.

What would my well-meaning diabetes police say if I responded to their comment of "Whoa!  Having pie?  You can't have pie!" with a dissertation:

"Yes, I can have pie.  If I'm willing to go through the necessary motions, you know?  I have type 1 diabetes, and I wear this pump to give myself the insulin hormone that I don't make for myself anymore.  Supplementing all day long!  Unlike type 2 diabetes, which I know you're more familiar with, I don't make any insulin at all, so every meal is a tight balance of blood sugar monitoring, carbohydrate counting, and then dosing my insulin in accordance with the meal I'm about to eat.  Then, after the meal, I'll keep monitoring to make sure that I'm not going too high or too low.  It's about balance, but not about deprivation.  So yes, I can eat this.  And I will eat this.  And so long as I'm able to keep my numbers in check, my body shouldn't rebel after a piece of pie."

The thing is, I've given this explanation before.  Many times.  And I've explained diabetes to so many family members and so many friends (and just as many complete strangers) that it frustrates me endlessly to see that they aren't retaining any of the information.  And not only are they missing what I'm saying, but they're constantly - albeit gently - calling me out for my actions.  It makes me feel like such a crumb, like everyone is watching me while I eat.  (Nothing like that to make you feel paranoid.  Not to mention pregnancy weight gain, adding insult to injury.)  I know they mean well, and I appreciate their concern, but they need to listen to me when I answer them.  And they need to trust me when I give a clear explanation.  I'm not asking them to explain their food choices or exercise decisions or the details of their daily regimen - it's not my business. 

I'm sorry if I seem frustrated, but the scrutiny is making my head and my heart ache.   I don't have a track record of being irresponsible.  I don't exhibit signs of disease ignorance or depression or unawareness.   I'm taking very good care of myself, especially now with the baby growing inside of me and my focus turned to diabetes the majority of my day.  I'm tuned in.  I'm careful.  I'm doing my best.

Yes, I can have the pie.  Next time, I might skip it for reasons all my own.  But whatever my decision, please don't assume you have a right to question it.  Until you are living with type 1 diabetes, you don't understand.  And I'm not expecting you to understand - ask me what you want to ask me.  I'm more than willing to talk to you about this. 

But if you don't have a question, and you only have those comments, I'm just respectfully asking you to be quiet.   Please.  I've had enough.

November 22, 2009

Looking Back: For My Mother.

As I'm working hard to build a healthy baby, my appreciation for my own mom grows every day.  Tonight, I'm revisiting a post from when I first started blogging in 2005, acknowledging just a few of the things that she did to make diabetes feel "normal."

*   *   *

For my mother...

Thank you for driving me to Joslin, even though you didn’t know the way. And for continuing to take me, despite how scared you were to make that lethal left hand turn onto Pilgrim Street to get to the parking garage.

Thank you for Clara Barton Camp, for sending me there. Spending summers with other diabetic children and counselors made me feel less alone and isolated. And made me confident enough to talk openly about my diabetes. To anyone.

Thank you for hiding ice cream sandwiches in the boxes of frozen peas and Ring Dings in the laundry cupboard so that I wouldn’t eat them. I know you were trying to protect me, but you’ve also provided me with stories that make my friends laugh so hard they cry.

Thank you for being patient with my nasty low blood sugar reactions – when I would throw bowls of cereal or cups of juice at you in my hypoglycemic rage. Or tell you I hated you. Or scream empty, desperate words of fury as my blood sugar plummeted. You know I never meant any of it. Not a word.

Thank you for being patient with the high levels, as well. When I had eaten something I shouldn’t have, or had skipped my shot on purpose. You kicked the plastic container on the floor when I was 385 mg/dl instead of yelling at me. You never said “Why are you doing this?” but instead “How can we stop?”

Thank you for trying with me. Walking to the benchmark on Watch Hill Road, traipsing down to the Harbour House with ice cream as a reward, or just going around the block a few times. You would tie your jacket around your waist, tuck a pack of crackers in your pocket, and talk to me about anything but diabetes as we strided confidently towards good control.

Thank you for crying with me. When I was frustrated. Or devastated. Or overwhelmed. Or lost. You said it was okay to cry. And that it was scary. You were scared, too. But I would be okay.

Thank you for making me feel normal. For not allowing insulin injections or blood sugar testing to come between me and my childhood. When Jill asked me to sleep over for her birthday party in second grade and I wasn’t doing my own shots yet, you drove to her house that night, before cake was served, and gave me my shot. And you came back, early in the morning, to give me my breakfast injection. I was diabetic, but they couldn’t tell by looking at me. They just couldn’t tell.

Thank you for letting me wake up Easter morning to see a basket that looked just like Darrell’s or Courtney’s, save for the fact that the contents of mine were sugar free.

Thank you for making my soul as healthy as my body. You understood that the disease is not just a matter of injections and beta cells, but also emotional strength and perseverance. You helped make me strong, in ways that translated far outside the reaches of diabetes.

Thank you for being certain that I would survive. I know you were scared when I was diagnosed. I was only six. But you were strong and seemed so confident that I would be okay, so I didn’t worry. And I believed you.

And you were right.

I love you very much, Mom.

October 29, 2009

Diabetes Can be a Five Letter Word.

... and that five letter word is "guilt." 

At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise.  "But the complications of well-managed diabetes?  None." 

And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me.  Well-managed diabetes produces no complications?  So diabetes-related complications are just the result of an inattentive "host," or "slacking off?"  It's not the fault of diabetes itself?

The direct relationship between diabetes and guilt has always made me feel ... well, guilty.  I'm not familiar with what it's like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well.  And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of "You did this to yourself."  It sounds harsh, but I hear it all the time.

It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to.  "The pump does it all for you, right?  So diabetes is like, simple to manage?"  Or "Just follow the rules and you'll be fine, right?  Bad stuff only happens to people who are lazy and don't take care of themselves."  I've never, ever heard someone ask a person living with a different disease - "Oh, what did you do to make this happen?" - but I've heard someone ask me about my diabetic retinopathy and respond, "Well, you must not be controlling your diabetes very well."

I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it.  I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should.  Efforts are made to best manage my health, but the fact remains that I have a disease.  I don't classify myself as "sick" and I don't view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin.  As a result of this, the blood sugar homeostasis of my body has been forever disrupted.  And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn't a cure.  My pancreas remains busted, so I will never be in "perfect diabetes control."

Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of "something I did."  I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault. 

Back in March, I found this piece of paper wedged into an old diary of mine from middle school:

Diabetes and guilt - nasty combination.

Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn't play a role in any of the outcomes.  "If I want to live:" is how that piece of paper starts off.  What a heavy burden for a child with diabetes.  High blood sugars?  My fault.  Spilling protein into my urine?  My fault.  Any threat of complication?  My fault?  Diabetes wasn't the cause - I was, apparently.  (Granted, many times highs and lows were a result of being a rebellious teenager or eating a 'forbidden food,' but were it not for the diabetes in the first place, it wouldn't be an issue.)

I don't agree with this mentality, and I refuse to subscribe to it.  Type 1 diabetes requires daily maintenance and diligence, but even if I follow "all the rules," there can still be complications.  My genetic make-up plays a role.  My family history plays a role.  And of course, my actions play a role.  This isn't a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health.  I have always tried to remember my role in this relationship with diabetes, but I can't fool myself into thinking that if I just work hard enough, my body won't ever exhibit diabetes complications.  If my eyes start to bleed, it's not because I didn't care enough.  Things happen, and I need to be able to roll with whatever life dishes out.  I live with diabetes every day - I don't need the guilt.

Because at the end of the day, diabetes complications are the result of diabetes.

September 29, 2009

Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

September 18, 2009

The Perfect Storm of Stupid.

Perfect storm of stupid.  And balls. I didn't check my pump before I left for work yesterday morning.  Not a big deal - I live close to work and I have back-up supplies at my office anyway, so there wasn't much I couldn't pinch hit for.  When the day started, I had about 20 units left in my pump to get me through to 5:30 pm.

No problem.  I'm using about 16 throughout the course of a day at the moment, so I wasn't worried about running out.  I went to work and did my thing.

But I forgot about our editorial dinner plans after work, taking place at my coworker's house, located about 40 minutes away.

And I also completely blanked when I went home for lunch because I was so hungry and so distracted by what I was working to finish before deadline at work that I neglected to refill my pump reservoir.

And I also was so elated by a freelance opportunity that came in late afternoon that I ended up racing out of the office, en route to dinner, without grabbing the insulin pen from my desk drawer.   

So I'm in the car.  Driving up to dinner.  With six units of insulin in my pump. 

"We're having apple crumb cake for dessert!" said my coworker's excited email.

I am Kerri's perfect storm of stupid.   

A few things were working in my favor:  the Dexcom had me flatlining, for over three hours, at 98 mg/dl.  I also had enough insulin in my pump reservoir to draw out a unit or two with the syringe I keep in my insulin case.  So there were options.

I didn't panic.  I just thought I'd lay low, eat conservatively, and ride it out until I got home and could change my pump.

Throughout dinner, I kept a close eye on the Dexcom and tested every 30 minutes or so to confirm.  But after a dinner of vegetables, chicken, and delicious rice, I saw the graph starting to spike a little bit.  Not crazy, but edging towards 150 mg/dl for the first time that day.  I avoided the crumb cake.  And knowing I had very little insulin left after dinner (only 0.3 retrievable units), I started to get a little anxious.

So I reached into my kit for that syringe.  

Which wasn't there.  

I am a maelstrom in Kerri's perfect storm of stupid.

In an idiotic move, I waited.  And then, about an hour later, went into the bathroom, removed the insulin cartridge from my pump, and stuck my pinky finger into the end of it to press more insulin into the tubing.  I've done this a few times when desperate, and knowing I had about an hour before I'd get home, even if I left right then, made me willing to take the foolish risk.

Another 30 minutes went by.  My numbers hit 177 mg/dl and stalled there, which made me think it was going to be okay.  I left my coworker's house and drove back home.  Once I got home, I switched out my pump immediately and then relaxed for a little bit.  Numbers were steady-ish, but nothing that made me jumpy.  

"Oh, starting to dip a bit."  The Dexcom said I was 101 and falling, and my meter confirmed with an 81 mgm/dl.  "I'm going to down a swig of juice and a kiwi before bed."

Chris:  "Why are you talking to yourself?"

Me:  "Because ... I don't know.  It's expository for the blog post, I suppose."

Chris:  "Okay."

Right before bed, I was 111 mg/dl, steady Dexcom, and feeling okay. So I went to sleep.

What makes this perfect storm of stupid particularly ... stupid is that my move in the bathroom with the unmeasured bolus was a disaster.  I had no idea how much insulin I'd taken, and I only knew some made it into my skin because of the little pinch I felt.  I could have taken one unit, four units ... or who knows how many.  But I'm obsessively stalking these highs and I was willing to take the risk.  Which wasn't smart at all.

Because at 2:51 am, I woke up completely drenched in sweat, my tongue a deflated balloon in my mouth, and panic buried underneath my exhaustion.  A full glass of juice, a concerned husband, a messy Kerri, and a prowling, yowling Abby.  A blood sugar of 38 mg/dl a few minutes after downing the grape juice. 

A perfect storm of stupid.

Preparation can't be overemphasized.  When your pancreas doesn't make it's own insulin and you're relying upon external sources, and when every food excursion depends on your careful calculation, winging it can cause problems on either side of the scale.  And all the lectures and blog posts and well-intentioned moments can't replace good, old fashioned stupid human behavior.

I am Kerri's hairdryer, running at 3 am because the sweat from the low was so copious and nasty.  I am Kerri's low blood sugar walk of shame.  I am speaking in third person because I'm so beat down tired today.

Diabetes, dude, you are The Suck.    

September 10, 2009

A1C Payoff.

Oh hell yes.I've worked very hard over the last few weeks.  There's no denying that.  

I've logged blood sugar numbers on the Kevin spreadsheet and busted my butt to keep up with the maintenance of those logbooks.

Chris and I have counted carb after carb, making sure that I'm dosing accordingly.

I have changed some of my "bad habits" here and there in efforts to get crap under better control in pursuit of BabySparl.  (I even gave up coffee.  For anyone who knows me, THAT is a huge thing.  Huge-r than logging numbers.)

And yesterday, after spending the entire day under the weather, my phone rang.  Dr. CT was calling with my A1C results.

"Kerri?  This is Dr. CT.  I have your blood work back."

I was napping off my illness just before she called, so I had to shove the cat off my head and rub the sleep from my eyes.  "Okay.  How'd I do?"

"Wonderful.  This is just great - such progress!  You're at 6.3%.  You have done a fine job."

"No kidding?  6.3?  That's the lowest I've had in years.  Ever, maybe."

"Well I wanted to call and tell you personally.  I saw these results and said, 'Oh.  This will be a fun call!'"  

"Thanks, Dr. CT.  Thanks for calling."

And that's that. 

There's so much swirling around me right now and so much change on the horizon that I'm excited, ready, scared, and overwhelmed and all I can think is that tomorrow marks 23 years that I've been living with type 1 diabetes and I'm still learning so much every.  single.  day.

August 25, 2009

Dog Days of Diabetes.

Ever feel like you're chasing your tail?  Running around and around and around until you fall down, exhausted?  Like a dog?  Like these are the dog days of diabetes falling smack-dab in the dog days of summer?  Like my next Joslin appointment is coming up fast this week and I'm hopeful that I've hit stride?

How would I illustrate that?  I suppose a dog would make the most sense.

But I don't have a dog.  So the best I can do is this:

The Sausage Days of Summer

Siah, you are my favorite little piglet.  And with your face smooshed against the bed after you just spent fifteen minutes trying to catch a speck of air, you are the breathing embodiment of how I feel. 

August 21, 2009

Staying Accountable.

It's been three weeks since my Joslin appointment and in that time, the accountability train, and thankfully, it hasn't derailed.  Or smashed into me. 

Yet.

But also in that time, I traveled to Spain, had plenty of wonky lows while traveling, didn't have internet access, and battled the time-space continuum, in addition to working plenty of hours at dLife before the trip and upon my return.  Stress levels?  Not at their lowest.  Also, logging opportunities?  Minimal.

But DUDE.  I'm still doing it.  

Thanks to the power of the Kevin Spreadsheet and the fact that I sit on my rear end all day long, staring into the abyss of my work Mac, and also thanks to the jazzy little Ann Taylor flashdrive I picked up at BlogHer, I actually have logbooks that mean something.  And I've actually stayed up on them for the last three weeks. 

Note:  I hate logging.  I always have.  I may always hate it, but the undeniable fact is that logging makes me accountable, too.  Seeing those numbers and the patterns they form forces me to recognize tricky trends and gives me enough perspective to make tweaks.  But I do so despise it.  It's a pain in the arse

The toughest part has been logging day-of.  Before we went to Spain, I was at work and able to keep the spreadsheet open on my desktop and update it as needed, never really breaking from work to fill in the gaps, but just keeping up with things as they happened.  And at night, I'd plug in the flash drive late at night, fill it in, and then start again the following day.  It was a tedious system, but I kept up with it.

Spain, on the other hand, was much harder.  No computer on hand during the day, difficult to track and log food (nevermind counting the stupid carbs) while we were exploring Barcelona, and even though the clock said 6 pm, my body was screaming, "Midnight, woman!!!!!"  If it hadn't been for the Dexcom, I would have completely lost control.  But since that Bad Larry was keeping me between the lines - literally - it helped me stay reasonably even.

Upon our return, it was hard to get back into the swing, but knowing my next Joslin appointment is next Friday helped get my priorities straight.  Right now, I have three neat little spreadsheets on my Flash drive, with 100% of the blood sugar results and about 70% of the insulin doses and food logs intact.  Chris is helping with my food and calculating carbs for me so that there isn't so much SWAG bolusing.  This, my faithful readers, is flipping progress for this girl. 

My 7 day machine average is down to 125 mg/dl.  My 30 day is 130 mg/dl.  This is with fewer highs and fewer lows (aside from a few episodes while traveling), which makes me feel more confident that I'm truly holding steady and not just averaging out.  I feel sickly when my blood sugar is 180 mg/dl, which means I'm becoming more sensitive to highs and also not as used to them.  (A major plus.)  My A1C came back at 7.1% last time - a .5% drop from the time prior - and I'm certain that next week will show even more improvement. 

I'm not messing around.  I can't.  I'm on a mission.  :) 

Another Stupid Note:  I'm not posting these numbers to brag.  Or to elicit criticism.  For me, these numbers are - for the most part - an improvement and I am using both Joslin and SUM as my tools for accountability.  So when you see the graphs and you see my machine average, don't think I'm inviting your commentary on my actual results.  Your diabetes may vary, and mine sure as hell does, too.  Cool?  Cool.

So next week, I'll toddle off to Joslin with four spreadsheets crammed with information and hopefully a cool head.  Chris and I will talk to them about making changes, and I'll leave feeling more in control.  Even if the numbers don't improve as fast as my attitude towards them, I still need to move forward as efficiently as possible.

Good control is RIGHT on the horizon.  I can feel it.

July 29, 2009

PatientBloggers at BlogHer09.

The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone.  Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.

Fast-forward to July 2009, when the PatientBlogging panel debuts at BlogHer, with Jenni Prokopy, Loolwa Kazoom, Casey Mullins, and me on deck as panelists, with Mr. Lady as our moderator.

I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues.  But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.

(It helped that my fellow medbloggers Rachel, Lee Ann, and Kim were right there in the front row.  Familiar faces ease nerves!) 

The PatientBlogger panel at BlogHer.  More on this photo later.  Sorry I'm not smiling.  :)
The PatientBlogging Panel at BlogHer '09.  For some reason, I'm not smiling.  But I was v. happy.

Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases.  Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me.  I'm also married, but that doesn't mean I'm only someone's wife.  There are many, many parts to the whole.  Diabetes is just a part of me."

We talked about what it was like to connect with people who "get it."  About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.  

"Big, fat disclaimer, guys."  I kept repeating myself, when asked how we deal with people thinking we're offering medical advice.  "It's not medical advice.  We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”

Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved.  As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.   

It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions.  But it was intimate.  Comfortable.  We, as a group, were protected within that room.  People spoke their minds, and let themselves cry, without fear.

So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room.  "I look like I have cancer, but I don't."  Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.

"No one has seen me without this, except my husband and my children."  She was crying, along with almost everyone else in the room who was watching her in awe.  "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want.  It will do wonderous things for you."   

Sometimes it's hard for us to blog about our diseases.  It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness.  Sometimes readers lash out and attack us for our opinions or our care regimen.  Sometimes we are forced to have thicker skin than we'd like.

But sometimes blogging about our conditions is what gets us through the day.  Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today."  Sometimes it's the comments from people who really understand what it's like to live with these diseases.  And sometimes it's simply knowing we aren't alone.  And that we never have been alone.

And now, with the support and love of our communities, we never will be alone again.

Patient blogging ... that's some powerful stuff.  This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.

July 27, 2009

Wait, You Wanted Pictures??

Wait, what's that?  You want to see pictures?  Oh hell yes I have pictures.

This event offered more than interaction with a seemingly open-minded Pharma company.  This event gave me the opportunity to meet and reunite with some of my favorite bloggers in the diabetes space.

Here's the standard shot that the crew at Roche took of all of us.  We look downright jolly.

Jolly bloggers

The night before our meetings with Roche, we went down to the hotel bar and hung out for a few hours (before getting kicked out, sort of, and ending up in Christel's room until the wee hours of the morning and being harassed by "Tim," who has been explained in several wrap-up posts from other bloggers).  

Here are three very special members of my diabetes family, even though this was my first time meeting Scott in person:

We are family.
 
But, of course, every family photo session has it's awkward moments where the big guy tries to toss the tiny blond in the air.  The Ninja and the me could only laugh and end up captured in awkward, eyes-closed grinniness:

Christi gets tossed.

There are plenty of wonderful people I finally connected with, but without formal photographic evidence.  Like Will from Life After DX, who I've been reading for years and am always inspired by.  And Bernard (spelled Bernard) from The Diabetes Technology Blog, who I should have met years ago but until this past week, had never had a chance to hug in person.  I had the honor of meeting Crystal (aka CalPumper), Christopher Thomas, Chris Bishop, Ginger Viera, and Brandy Barnes for the first time, too.  And there were also the several bloggers who I have had the pleasure of meeting before, like Fran, Amy, Manny, Christel, Scott Strumllo, LeeAnn, SuperG, Scott King, Kelly, Jeff, Gina, Riva, Kelly Close, Allison, and Bennet.

Also, my old friend Sandra Miller was in attendence, representing with Bennet Dunlap (again, I know!) and Jeff Hitchcock as the parents of children with diabetes.  David from Diabetes Daily was also there, on behalf of his wife Elizabeth (who is type 1).  Charlie Cherry and David Mendosa represented for the type 2 crew, and Kitty Castelinni stood as one of the few recipients of a pancreas transplant.

So we all met up. 

And goofed off.

A potluck of bloggers ... and this isn't even everyone.

Including Bennet showing off his fabulous pink camera (ooooh!), a late-night packy run, Kelly sharing stories from her diabetes past that made me want to give her a huge hug, a Blair Witch moment and, of course, Christel throwing down to "Tim," a random caller who was intent upon snuggling with Mr. Diabetic Rockstar.  Needless to say, all 4'11" of Christi kept Tim from making any fast moves, and to say that Christopher owes her big time is a gross understatement.  ;)

(Sidenote:  David, I still think it was you who called from the bathroom, but the world may never know the real truth.)

It was a true potluck of diabetes bloggers, representing from all sorts of different demographics.  Unfortunately, there were several bloggers who were missing from this group, and I'm hoping - no, damnit, I'm demanding - that there is an invitation sent to more members of our influential blogging family for any future meet-ups.

These people are my friends.  They're the people who understand what living with diabetes is really like, and they are the external support network I have been hoping for since my diabetes diagnosis in 1986.  So thank you to Roche for giving me the opportunity to say hello to, and hug warmly, the people in this community that I cannot wait to see again.

More of my photos are in Flickr, and there's also a D-Blogger Summit photo pool where you can grab the best of the shots!   

July 15, 2009

CWD: "You Can Not Like It and Still Do It."

Joe"Friends for Life ... this conference is delicious.  It's like the Woodstock of diabetes," he said, pacing around the room and smiling warmly.

Meet Joe Solowiejczyk. 

According to his bio on the CWD website, "He [Solowiejczyk] currently works for LifeScan, as Manager of Diabetes Counseling & Training and is a faculty member of the Johnson & Johnson Diabetes Institute. Joe is healthcare professional who has lived with Type 1 diabetes for over 47 years, Mr. Solowiejczyk has been able to translate his personal experience into patient care."

To my untrained eye, Joe is the "guy who gets it."  He's a diabetes nurse educator, and a person with diabetes himself.  If he was a member of my personal medical team, he'd be the one I take most seriously because when I say, "It sucks," he could respond, truthfully, with "I know."

Joe hosted a session at Children With Diabetes called "It's Not Just a Numbers Game."  This grabbed my attention because I write constantly about how an A1C is only one part of diabetes management.  There's all this emotional and mental stuff that comes into play.  

"Ask me if I like it," Joe said to the group of us.  He paused for a second.  "I hate it."  

I was sitting at a table with a bunch of CWD parents (including Bennet and Michelle) and I heard them all chuckle, but I just nodded in agreement.  Empowerment is being able to say that diabetes is hard and that it sucks sometimes, but still forging ahead and working towards better health.  I was glad to hear Joe telling this group of parents (and adults diabetics) that diabetes doesn't have to be something we like.  We can hate it, openly, and still remain positive.

"I schedule my diabetes depression days," he said.  "I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am."  He laughed.  "After about an hour, I'm sick of it and I just want to move on with my day."

I like Joe.  I like listening to him talk and I respect him for managing diabetes for over 47 years.  I respect him for saying, "It took years for me to be able to say, 'I'm having a hard time with diabetes,' without it being a chip on my integrity."  This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness.  But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.

"You can not like it and still do it.  Hating it [diabetes] and doing it are not mutually exclusive states." 

He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way.  The possibility of a cure was mentioned.  And while many diabetics say "I'll eat the contents of an entire Crumb's Bakery," or "I'll drink orange juice FOR FUN," Joe smiled gently.   

"If there's a cure?  What will I do?  I'll sit on a park bench for three weeks and stare at the sky and do nothing."   

Counting clouds for a cure.

It'll be 23 years for me this September.

I'd love to sit on a park bench and count clouds for a while.

July 02, 2009

One Lump or Two?

Like I wrote a few weeks ago, "Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile." 

But on the flip side of that, there are some diabetes-related things that make me grimace.  (Not Grimace, but grimace.)  And when I'm feeling down about the hard parts of managing this disease, I often turn to humor to lift me back up.  (For me, a little gallows humor goes a long way in keeping me from really falling into a depressive state.  It seems like a counterproductive idea, but it really helps me.)

This is where Haidee Soule Merritt's book comes in:  One Lump or Two?  Her book more than resonated for a 20+ year diabetes veteran like myself.  It's taken me a long time to build up this much amusement at a disease that's trying its hardest to take me out, but now I'm in the thick of the smirking-despite-the-chaos.  

As I read through her book, I laughed.  I laughed and nodded my head in agreement, thinking, "Oh hell yes, I hate those geyser fingerpricks."

How many times has this happened to you??
Who hasn't this happened to?  (Image credit:  Haidee Soule Merritt)
 
I snicked despite trying to be classy when I saw the one about low blood sugars after sex.  (Trust me, not fun.  And also, awkward as hell.)  

Low blood sugar after sex.  Oy.
Been there.  Done that. (Image credit:  Haidee Soule Merritt)

Diabetes isn't easy.  Neither is laughing at it.  But laughter, finding something that alleviates some of the anxiety and fear that comes with a chronic illness, can make such a huge difference in health.

If you want to order your own copy of Haidee's book, visit her website (and enjoy the duck sounds on the buttons, because they quacked me up).  As you thumb through your copy of One Lump or Two?, you'll find yourself smirking with understanding, too.    

July 01, 2009

Between Dinner and a Movie.

Saturday nights when we were very small were the best. 

We made blanket forts and used every damn cushion in the couch.  Laying pillows on the floor, we'd jump from down-filled island to island, pretending that the carpet was infested with alligators and only by balancing on the pillows would we be safe.

The babysitter always promised to make healthy dinner, but usually we ate popcorn, chicken fingers, and drank diet soda by the bottle, filling the glasses to the very brim and frantically slurping the carbonated foam awayI loved this doll.  I even pretended she had diabetes.  Which is a bit odd. before it could spill over.

My favorite babysitters were the ones who played with us, not just sat there and talked with their boyfriends on the phone.  Carolyn was my favorite one of all and I named my Cabbage Patch doll after her that year.  She was pretty and smart and the characters she pretended to be were so clever.  She was the perfect example, to me at seven years old, of what a 'hero' really was.

My parents had a standing Saturday night "date night," and they would go out to dinner either alone or with some friends, then maybe to a movie.  Usually they left when it was still light out, while we were still outside playing in the yard or just coming in to have a snack.  My brother and sister and I played and fought and made messes and told stories and generally destroyed the house, like little kids do.

Only now, when my memory is jogged, do I remember the headlights pulling back in the driveway, between when dinner ended and the movie began. 

Dad would wait in the car while Mom ran in quickly to test me and give me my bedtime insulin injection.  Then she'd say goodnight to all of us and run back out to the car to continue "date night."

Only now do I remember those moments and wish I'd named "Carolyn" after my mother, instead.

June 30, 2009

Penguin Truck.

We're planning for a pregnancy, so I've been working tirelessly to stalk my blood sugars.  I'm wearing the Dexcom, testing regularly, and really aggressively chasing highs and lows in pursuit of that nice "between the lines" look on my blood sugar graphs. 

So when I changed my infusion set last night and neglected to take the 1.0 u bolus in anticipation of the high (which seems to be the only way I can keep the highs at bay after a site change), I knew I was in trouble.  Sweaters on my teeth, and my tongue thick with dehydration, confirmed by the 254 mg/dl on my meter.  I cranked up a correction bolus and sent it cruising in, along with some frustration and a few choice curse words. 

A few hours later, I was on the steady but seemingly safe decline, with the Dexcom keeping tabs and my meter serving to confirm.  No worries.  I ate a snack (cottage cheese with some frozen raspberries) before bed and snuggled against the pillow (read: cat) at a blood sugar of 187 mg/dl.  Higher than normal, but I knew it would continue to come down.

Didn't anticpate the 3:30 am wake-up call of BEEEEEEEEEEP!, though. 

I have no idea what my blood sugar was.  The Dexcom showed me only as "low" and I woke up crying, for some reason.  Chris was next to me, fast asleep, but I didn't wake him up.  I don't know why.  A bottle of glucose tabs sat on the bedside table but I didn't reach for them.  I don't know why.  The shape of my body was outlined in sweat on the bedsheet and my hair was sticky, and for some reason combing my hair down before I went to get juice took priority over eating something to correct the low. 

I don't know why.

I don't remember a lot of this low, and that scares me.  I was dizzy.  I was stupid for not waking Chris up and asking for his help.  I remember hearing the Dexcom wailing from the bedroom as I stood at the fridge in the kitchen.  I drank the juice directly from the carton, drinking well past my eight sips and gulpinThese guys can just go right to hell.g until I couldn't catch my breath.  Yet, I remembered to wipe down the floor to clean up what I spilled.  I don't know why.

Hitting that stride, hugging close to the center lane of 100 mg/dl, is really what I'm aiming for.  I've been doing better lately, so every time I'm way off target, I feel the symptoms too late for lows and very intensely for highs.  I know this is a signal that I'm in tighter control, but once I'm stuck in the spin cycle of high-to-low-to-high and back again, it's hard to climb out.  And a lot of time my morning number sets the stage for the rest of my day.  Last night's low blood sugar left me at 199 mg/dl this morning, and I still haven't settled back into range.  I feel frustrated, knowing my A1C is being drawn at the end of July.  But last night's events kicked my ass too thoroughly for me to focus on anything other than muddling through the day.

It's that pesky penguin truck again.  I hope the tire tracks aren't too visible this morning.  

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

June 16, 2009

Do I Have the Right?

Over the weekend, Chris and I (and his sister and dad) ended up in a harborside restaurant in South County, RI.  We stood in line and read the chalkboard menu until it was our turn to order from the girl behind the counter.

"What can I get for you?"

"Can I have an iced coffee?  Do you have iced hazelnut?"

"I'm sorry - we don't have hazelnut.  But we have snickerdoodle or french vanilla.  Either of those work for you?"

"Snickerdoodle sounds awesome.  Is that a syrup?  Is it sugar-free?"

She gave me just a quick look.  Not judging, just looking.  "It's definitely sugar-free.  Medium or large?"

"Large," I said, and she turned away to make my coffee and I saw the pink Animas pump clipped to the side of her black pants, the tubing sticking up all crazy. 

And instantly, I want to ask her a million questions. 

With the Dexcom and the Animas being integrated sometime "soon" and with my only pumping experience being with Minimed, I wanted to ask her how she liked the Animas.  I wanted to see how long she'd been diabetic and did she go to Joslin, too?  Did she know any other diabetics?  How long had she been pumping? 

I wanted to tell her that the tubing gets all crazy on my pump, too, sometimes. 

But do I have the right to make her diabetes my business?  Just because I write about it doesn't mean I have the right to grill her about her diabetes.  She wasn't asking me why I wanted to make sure the coffee was sugar-free.  She was just going about her business.  Did I have the right to poke into hers?  Just because she wears an "external symptom" of her diabetes in the form of that pink pump, did I have the right to ask her about it?

There have been a few times when a diabetes discussion was thrust on me without my invitation.  "Hey, what's that thing on your hip?" becomes this moment of advocacy that, while effective, wasn't what I wanted to do that day.  Sometimes I just want to order my coffee without being grilled about why I need to make sure the syrup is sugar-free.  Other times I'm blogging about the teeniest minutiae of life with diabetes.  I oscillate between wanting to be a diabetes advocate and someone who lives a quieter diabetes life.  Sometimes I don't want to talk about it at all.  That day, I didn't want to be an advocate.  (Or a pain in the ass.)  I just wanted to get some coffee and enjoy the day.

Maybe she doesn't want to talk about it, either. 

She made my coffee and added some cream.  I handed her my money. 

And I left without saying anything.

Do I have the right?

It's not always what we have to talk about.  There's way more to us than this. 

June 15, 2009

Old School Diabetes: Diagnosis.

I saw my niece over the weekend.  She just turned seven.  She had a bit of a fever and wasn't feeling very well, so when I saw her snuggled up on the couch under a blanket, she looked every bit the little kid she is.  Poor little peanut, hiding out until she felt better.

I remembered that I was about her age when I was diagnosed.

I found an old school photo from second grade, with me sitting next to my friend Bobby (who I still talk to, which is a very surreal experience, hanging out with someone I've known longer than I've known insulin injections).  I was diagnosed in September, right as second grade started.

Second grade, 1986.
I'm in the blue dress, second row from the bottom, third from the left.
Swinging my feet.  Not much for sitting still, even in second grade.

Over the last few days, I've been reading some emails from the CWD parents as they gear up for the Friends for Life conference in Orlando in a few weeks.  These emails are sent out to a whole mailing list of attendees, and somehow I ended up on the list with all the parents.  (Or maybe the list just happens to be mostly parents and I just happen to be an adult "kid" with diabetes.)  These parents are comparing notes and reaching out to one another, looking forward to other parents who understand what they're going through every day as they care for their kid with diabetes.

And I wish that my mother had this kind of support when she was dealing with my diagnosis over twenty years ago.  My mom had a lackluster team of doctors at the Rhode Island Hospital (where I went for a few months before going to Joslin) and Eleanor (the only other mother of a diabetic kid that we knew of in our town and the woman who just happens to be my local Dexcom rep), leaving her with little to manage the enormous learning curve.

This weekend, I went on a bike ride with my sister-in-law, my father-in-law, and my husband.  I had to remember to test beforehand, bring my meter, stash some glucose sources on several people, and monitor as re rode.  A lot of thought for maybe an hour long bike ride.  And it made me wonder what kind of preparation and worry my mother went through when she sent me out to play for a whole Saturday afternoon.  Lot of work on my mom's part just to keep things normal. 

I forget this sometimes, how many people are really involved in keeping me healthy. 

I need to call my mom. 

(Granted, my diabetes diagnosis hasn't kept me from doing much at all.  And it definitely didn't keep me from being ... um, a bit of a goofball.)

June 12, 2009

Community, Everywhere!

Earlier this week, dLifeTV did some filming for our upcoming new season.  And as part of a segment we're doing on online diabetes support, I had the chance to see Nicole Johnson again and to meet two members of the dLife community - Mark and Shauntaye.

Tune in to dLifeTV to catch these new shows!

We talked about our common experiences as people with diabetes, and how online communities have positively impacted our health.  I thought about all of us, writing our blogs and really sharing so much of our personal medical experiences, and how much this whole journey has helped improve my life with type 1 diabetes.  Our little community here has gotten so big.

I spent the better part of this week confirming travel arrangements for the next few months, and even though I'm not a very good (or calm) traveler, just knowing I'll have the chance to connect with more people who "get it" makes all the flight anxiety worth it.  I'm looking forward to visiting Philadelphia for a conference at the end of the month and hanging out with some fellow d-community members.  I cannot wait to go to Orlando in a few weeks and attend CWD's Friends for Life conference.  I'm excited for the Diabetes Summit in Indianapolis in July, and for the BlogHer event the next day in Chicago.  And I am so honored to be speaking at the BlogWorldExpo in Las Vegas in the fall.  Lots of travel for a cause I'm still so passionate about.

But damn ...  I'm going to need a bigger suitcase.  ;)

Since I started blogging four years ago, I've had the opportunity to meet many fellow diabetics, either through SUM or TuDiabetes or the JDRF or dLife.  We're a supportive and inspiring crew, and I'm really looking forward to meeting more of us "in person."

June 09, 2009

Zombie Lows.

Weirdest dream.  Ever.The BEEEEEEEEP! woke me up from a dream about having my arm chewed off by a zombie that looked like Kevin James.  (Zombie dreams are common in my house, apparently.)

I wasn't sweaty and my skin didn't have that flushed, clammy feel, but my whole body was extra-sensitive and jittery.  Like being covered in sand, only every granule was touching a nerve.

For once, I didn't bother testing.  I knew I was low.  The Dexcom was howling from underneath the bedside table (where I must have lobbed it like a softball when it went off the first time.)  The display kept glowing "LOW."  I reached into the drawer of the bedside table and retrieved a tube of cake frosting.  Red.   

It's been a while since I've had a low in the wee hours of the morning.  I've woken up on the lower side a few times in the past several weeks (morning numbers in the 60's and 70's - too low for me), but there haven't been any low messes at 3 am. 

Until last night, of course.

Still unnerved from the Kevin James zombie dream, I consumed some cake frosting and let the sugar settle into my system.  It was absolutely silent -  not a sound coming from the roads outside or the cats milling around in the living room - and my brain kept screaming for more sugar.  

This is where I get stupid every time.  The frosting I ate was enough to cover my reaction.  After I tested, I saw that I was 45 mg/dl.  I'd already eaten about 20 grams of carbs, which would have brought me up nicely to about 100 and left me there.

But I had a brain full of zombie nightmare panic and low blood sugar, so I stumbled out into the kitchen. And proceed to drink about three cups of juice to quell my anxiety, checking in the hallway for zombies after each gulp.  It's so psychological, the way that juice calms the "low feeling" faster than anything else, purely in my mind.  Even if my blood sugar doesn't budge a bit, just drinking something sends my brain the "it's going to be okay" message.  (But I hate over-treating, because then I just end up high. See also: This morning's waking 290 mg/dl blood sugar.)

I wander back to bed, Abby circling my feet like a shark while I walk.  I'm starting to feel better, even though it doesn't dawn on me yet to maybe bolus for all the extra juice I drank.  Running my toothbrush under the water (because I can't stand waking up with that juice taste in my mouth and yes, this post-low dental hygiene thing happens all the time), I look into the mirror.  My hair is a disaster.  My eyes are wild, like a child who has been locked in a closet for days on end, pupils darting from side-to-side, panicked.  The bags under my eyes are distressing and apparently packed for a long trip.

God, I look awful.  Is this what a low looks like from the outside?

I remember the zombie dream and realize how ridiculous it was.  What kind of person dreams that Kevin James is gnawing off her arm?

I smile.  

And am startled to see my red teeth grinning back at me, stained from the frosting.   

June 01, 2009

Focus: The Diabetes Things I Like.

Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile:

  • I like when I change the battery and the insulin reservoir at the same time.  Having my Medtronic 522 "full" on both sides makes me happy.
  • I like when the carb count on something is exactly 10 grams of carbs because it matches my insulin to carb ration precisely.  One snack, one unit, one oddly happy Kerri.
  • I like the sound of the pump counting up a bolus.  Boop boop beep!
  • I like when the sound of the bolus is caught by Chris and he ends up whistling it back to me, almost without thinking.  It's a little soundtrack snippet of our life.  
  • I like when the cats wait patiently for me to remove the pump tubing from my body before they lunge for it.
  • I like when new boxes of diabetes supplies show up and I can organize them in my little OCD supply closet.
  • I like when the number on my meter is two digits, but higher than 89 mg/dl.  It's a tight range, I'm not usually in it, but it brings me weird joy.
  • I like when the Dexcom beeps and my coworker (who works a wall away from me) IMs me quietly to check, "Low?" because she's ready to get juice if necessary.
  • I like not having to wear a watch. Diabetes simple pleasures.  Damnit.
  • I like when I get to dump all the used test strips that have piled up throughout the day.  Knowing I've tested a bunch makes me feel like I really stayed tuned in.
  • I like the smell of white glucose tabs.
  • I like when the new infusion set doesn't sting at all.
  • I like having someone in my life who is willing to get their hands covered in SkinTac in an attempt to stick a Dexcom sensor to random places on my body.
  • I like that the hope of the parents of kids with diabetes rubs off on me, and makes me feel good for even just a few minutes.
  • I like that diabetes gives two people, who wouldn't otherwise have a thing to say to one another, a whole dinner's worth of conversation.
  • I like having coworkers who understand but don't push.
  • I like when my best friend clinks her beer to mine and says, "Bolus, baby."
  • I like when the cat licks my hand after I test.
  • I like "free shower:"  a shower without a pump site or a CGM sensor attached.
  • I like having a whole network of people who understand - and do not judge - my diabetes life.
I like when I can focus on the silly, simple things when I feel a little overwhelmed by the tough stuff. 

May 29, 2009

Old School Diabetes: Meters.

A few weeks ago, when I was poking through some old photos, I found my first teaching manual from Joslin.  (The big, red book.)  And tucked inside of that book were some old advertisements for glucose meters.

Like this brick from Accu-Chek:

Old meter from the dark ages of diabetes.

This thing was huge, took two minutes to produce a result, and it was heavy enough to double as a hurricaine doorstop.  It's remarkable how much this technology has changed in the last twenty-two years.  Here's another oldie:

Another oldie.

I love the instructions - they're a freaking mile long!  Blood glucose monitoring has come a very long way since my own diagnosis - from urine testing to blood testing to the Dexcom that reads me every five minutes - but I'm not as impressed as I'd like to be.  I heard a few months back that the accuracy requirements for today's meters are the same as they were back in the late 1970's.  (Is that true?!)  Color options are great and shorter instruction manuals are also nifty, but I'd like this thing to give me results that are SPOT freaking ON. 

Like this morning.

I tested and got 77 mg/dl on my meter.

The Dexcom said I was 39 mg/dl.

I tested again and saw 101 mg/dl.

How can I respond to a number that doesn't sit still for even a second?  How is a diabetic supposed to aim for that moving target?

Most days, diabetes doesn't get into my head and scratch around.  Most of the time, I feel emotionally and mentally equipped to handle the disease management and "life" management.  It's never fun, and never simple, but it's something I feel at peace with.  But this morning, I couldn't even get a sense of what blood sugar number to react to.  And when I peeled off the Dexcom sensor to replace it, a ripe, red dot of infection had brewed up underneath.  My blood sugar, when I arrived at work, was 123 mg/dl but after I ate my snack, it crested up to 234 mg/dl for some ungodly reason.  I don't know which end is up.  And technology isn't doing anything to make type 1 diabetes any easier.

Today, I'm spent.   

April 30, 2009

I'm in the Zone: Cortisone.

So yesterday I went to the orthopedist for this wrist mess.Frigging sting!!

I was all, "I've been wearing the brace and I stopped lifting at the gym and have generally been taking it as light as I can, but no improvement."

And he was all, "Well, we looked at your x-rays from today and your radial and ulna bones are in perfect position, so it does appear to be a tendon issue and not a bone issue."

And I was all, "That's good, right?"

And he was all, "Yeah.  So let's talk about options.  We can move with the brace for another month, or you can do physical therapy, or you can do surgery."

And I was all, "Hmm.  Well the brace isn't helping yet.  And I don't want surgery.  Let's do a cortisone shot and follow up with physical therapy?"

And he was all, "You're an educated patient.  Okay, we'll do a very small shot today and see how that works for you."

So I sat down in a chair in his office and he moved a small table towards me for me to prop my elbow up on.  He left for a minute and then returned with a small bottle, a cotton swap and injection prep wipe, and a massive needle.

And I was all, "Whoa, that's a big needle.  Do you put the whole thing in?  That would come right out the other side of my hand!"

And he was all, "But you do needles every day, don't you?  This should be okay with you."  

And I was all, "Irony, eh?  I hate needles that I'm not controlling.  And that mega-needle?  Scares me."

And my blood in my face was all draining, so I looked white as a sheet.

He was all, "You're going a little pale on me.  Are you okay?"  He swabbed my wrist and shifted my arm around until the proper injection area was exposed.

And I was all, "I'm okay, I'm just not going to watch, okay?"

He nodded.  And the needle was all of a sudden embedded into my wrist and the pressure of the cortisone being injected made me squirm instantly.

I was all, "Ow."

He was all, "Just a few more seconds and I'll be done.  And ... you're done.  You okay?  Do you need to lie down?"

And I was all badass:  "Nah, I'm good.  I'm just going to sit here for a minute while you explain what happens next and I pretend to listen fully despite the pain."  I smiled.  But winced.  Sort of at the same time. 

And he was all, "Elevated numbers for a few days ... increase basals with your endo's help ... keep wearing the brace ... it's going to hurt where I did the shot tomorrow, but you should feel real improvement by about this time next week ... if you don't, we'll want to do that physical therapy and consider maybe another shot depending on how you feel ... you'll be okay ... hey, are you okay?"

And my color was all returning, but slowly.  We finished up, and I tested.  155 mg/dl.  Okay, a little higher than the 114 mg/dl I walked into the doctor's office at, but it must have been a stress bump.  I didn't want to fool with my basals until I was sure that the cortisone would make me high, so I waited a few hours before doing some tweaking

In the course of six hours, I went from 155 to a steady stream of 190 - 240 mg/dl numbers.  I tested for ketones and - low and behold! - the little stick went light purple on me.  Small ketones, prolonged highs, and the pain from the actual shot set in around 8:45 pm.  This morning, I woke up at 213 mg/dl and even after an aggressive bolus, I'm still cruising in that general range.  Basals have since been cranked to 150% and I'm both wearing the Dexcom and testing every hour.

The ketone thing is what's throwing me for a loop.  I hardly ever throw ketones - why now?  I drank a lot of water, ate some carbs, and still had the ketones this morning.  (Poor Chris - I asked him to test himself for ketones because I was convinced the Ketostix weren't working right.  He was all, "Um, I'm negative."  And I was all, "At least I like the color purple.  Blaaaargh.... ")

I hope this was the right decision.  I'm desperate for my wrist to heal.  The doctor said this pain and the highs could go on for 3 - 7 days.   

And I was all, "This sucks."

April 27, 2009

Ding! Diabetes!

Crap happens. 

Case in point:  last week.

First off, my frustrations about diabetes are at an all-time escalation point.  The blood sugar logging, even though it is working and my averages are already in a better range, is very time-consuming and is a constant reminder of diabetes and all its trappings.  I'm logging my blood sugar tests, the food I'm eating, the exercise I'm doing, and the boluses I'm taking.  Everytime I go to jot down a result or log a carb, a little alarm goes off in my head.  "Ding!  Diabetes!  Ding!  More diabetes!  Ding, ding!" 

Secondly, I called Joslin to follow up on the photos they took of my eyes.  "Oh, hi.  Yes, you look good.  Twenty-two years, huh?  Wow.  Well you only have mild retinopathy in your right eye and barely anything in your left."

Well there's a word I've never heard before.  Not directed at me, anyway.

"Excuse me?  What's that?"

"Mild is when there are less than five spots.  So the right one is mild.  The left, too, but less than the right."  She said this like I was aware.  

"That's news to me.  I had a dilation in January and there was a little bleeding, but he didn't say that's retinopathy."

"Well did he say you had bleeding?"

"Slight, yes.  In the right eye."  Am I an idiot?  Bleeding IS retinopathy, stupid Kerri.  So since it's been there for months now, why are you getting all freaked out?  "So yes.  Sorry.  I just haven't heard that word yet."

And she explained the follow up and what would happen next, and we talked about how it might be handled if my retinologist in Stamford decides lasering it before pregnancy would be a good idea.   And the more she talked, the more I realized I wasn't getting teary or upset or sad about it.  I felt pretty damn mad.  It's never enough to really beat this thing, or at least it feels that way on some days.  After a certain amount of time, no matter how hard you work, something gives at least a little.  And in this case, it's the blood vessels in my eyes.  Now that box is checked - the one that says retinopathy - and slowly my dance card fills up.

My body feels like it's caving in a bit these days, and I'm trying to stop that avalanche from devouring my optimism.  Between the constant logging and the wrist issue and now this checked box, I'm frustrated with diabetes in general.  I need to find a little extra grace to get me through these moments.  Got any? 

And thirdly, added to this pile is the fact that my literary agent and I parted ways last week, and I'm now searching for new representation.  (If you are a literary agent or publishing house and you're reading this, email me at kerri [at] sixuntilme [dot] com.  There.  I said it.  I'm actively looking.)

So last week sucked a wee bit.

Violets on the rocks.
 
But waking up Saturday morning to awesomely warm weather and spending the afternoon with one of my best friends?   Spending Sunday cheering another buddy across the finish line and gossiping over breakfast?  And rounding out the weekend with a long hike in the woods and then taking in a movie?  All enough to pick me back up and set me straight again. 

Last week knocked me around a little bit, but I'm trying to stay positive.  I'm done bitching and moaning.  Time to move on.

It helps that in three weeks, I'll be on a cruise in the Caribbean for my wedding anniversary.  Hey, I believe firmly in the power of vitamin D.  :0)

April 21, 2009

Precision LogBooking.

"So what is this one, the 236.  Did you correct this?  Is this after eating?  I can't really tell."

And I peered at the logbook, chock full of results.  Months of results, all neatly organized by date and time.  Only without food or insulin doses written in, so it was less like a diabetes assessment tool and more like the machine that spins the bingo balls. 

"Ah, I have no idea.  Damn, I have no clue, actually.  I'll assume I corrected it." 

There's not too much difference between writing in all the results the night before an endo appointment and printing out the numbers.

With last week's endocrinologist appointment being a little less than thrilling, I'm on a new game plan to get ready for my June follow-up.  Dr. Brown has asked me to keep a detailed logbook of my numbers.  Not necessarily a food journal, but more a list of blood sugars, insulin doses, and carb intake.  

"You don't need to list the kind of fruit you ate, but if you just put that it was 20 grams of carbs, that would be what we need.  That way we can tell what's causing what."

The wee ickle logbook.

So I bought a very small moleskine book to record everything. (I love these books. I have one in my purse at all times and I use it to jot down everything from blog post ideas to words I want to remember to look up to reminders that if I don't pay my cell phone bill, they will come for me.)  It's a wee little thing and it fits in my meter case.  Surely it will be covered in blood and have test strips stuck to it by the end of June, but so far it's been one full day and I'm still on the wagon.  (And that, my Faithful Readers, is saying a TON.)

I get burnt out with the details of diabetes.  The whole logging thing throws me off my creative stream of consciousness.  "You mean I have to write this stuff down and analyze trends?"  I'll wear the pump and the Dexcom and do my due diligence, but when it comes to the diabetes nitty-gritty, I often tumble off the wagon.  

It's a lack of patience.  Maybe a lack of desire to make a blood sugar testing moment last more than the five second countdown.  I don't like when I feel so much of my time slipping into the realm of diabetes management.  And I make plenty of excuses not to focus:  "I'm heading to Tucson."  "I'm going home to RI for the weekend."  "I'm having dinner with NBF."  "I'm too busy at work."  "I'm ... no."  

But I'm a woman on a mission.  If I don't ever buckle down and make my A1C my top priority, it may always hover around seven plus percent.  Even if it's a pain in the ass, and even if it's "hard," I owe it to myself and my future family to give it my best.

Poor Chris.  He thought Twitter ate up time?  Wait until he sees how often I have to logbook.  

April 15, 2009

Deflated.

Yesterday didn't go as well as I had hoped.

The nurse came in first and took my blood pressure (fine), weight (slightly higher than last time but I can deal), and my A1C.

(Yes - Joslin is finally giving their adult patients A1C results day-of!  I was abnormally excited.  "You mean I'll know in 15 minutes?  Really?"  The nurse looked at me like I was new to the planet.  But for a minute, I was ecstatic.  I hate waiting.)

While the results were being spun, my endocrinologist came into the office and she and I spent almost two hours together going over numbers, plans for improvement, and the specifics of pre-pregnancy appointments.  While we were talking, the A1C result came through.

"Okay, so you're just where you were four months ago."  

And I felt like crying.  It's overly-dramatic and pretty sad to feel so affected by this number, but it has always been the standard I judged everything against.  It was the number that defined my health. It was the only number in my diabetes world that mattered, and a result that was too high tarnished my spirit.

It spoke to my success, or failure, as a person.  

Or at least that's how it's always felt to me.  

So I felt very teary and felt totally deflated.  And my endo kept talking, moving on past this number and instead trying to isolate patterns in my blood sugars that could be contributing to this result.  We went over my January lab results, and she was very happy with my cholesterol and my heart health.

"You're exercising how often?  Five days a week?  That's great.  I wish more of my patients were into their cardio that way.  Your resting pulse is very low.  That's good."

I couldn't stop thinking about the A1C.  Even though we're not actively trying for a baby, I wanted to get the green light, at least diabetes-wise.  I want to be a mom, and I don't want diabetes being anything that makes me decide to wait.

"Yeah, but the A1C.  I mean, that's the same as last time.  I felt so sure that I was doing better."

She looked at me.  "7.5% is not where we want you. Under 7, if we can, and even closer to 6, if possible.  But it's time, isn't it?  You feel ready?"

I nodded.  A little afraid to speak because this is something I've always wanted.  To be a mom.

"Okay, so it's time to schedule the pregnancy clinic.  Let's get this in motion and we can make everything fall into place.  And I want you to meet with Doctor Boston because she's the leading high-risk maternal fetal medicine ob/gyn out there, and she'll be able to handle your type 1 diabetes, Factor V, and hypertension.  You have more than two decades of diabetes under your belt, so I know you're feeling vulnerable.  We'll schedule this for June?  Does that sound okay to you?  Between now and June, you and I will work together to make this A1C happen."

"So the three of us will be together on this appointment?  And she'll see me through my pregnancy?"

"She'll actually be delivering your baby.  She's the best.  You'll be in very good hands, Kerri."

I had this moment where I clearly pictured this moment of delivery, when I will go from Kerri to "mom" and Chris becomes "dad" and in that instant, diabetes won't count.  It will be about me, and my husband, and my baby.  I felt hopeful that maybe, with enough help, I could really do this. 

"June.  And if I'm good in June, we can actually decide if Chris and I are ready to get pregnant?"

"Some mommies, I worry about.  I worry that they won't be willing to give it the best try they have in them.  But you, I don't worry about.  We can get you there.  You aren't going to do this alone."

"Okay.  I can do better.  I really need to do better.  I'm ready." 

She printed my prescriptions.  They took photos of my retinas to send to the pregnancy clinic.  I paid my co-pay.  I asked Chris to wait for a minute while I ducked into the bathroom.

I closed the door behind me and cried.  I'm so afraid that I can't do this.  I'm so afraid to do this wrong.  I'm almost afraid to try.  I'm afraid to hope.  But I'm so sure that I can overcome these obstacles, just like other women with diabetes have done before me, and become a mom. 

Cried so hard I thought my heart would break because I think this can really happen. 

Hopeful.  Damn it.
 

April 14, 2009

Joslin: I'm So There.

Thumbs up for, um, blood!I'm driving my little Honda up to Boston today for my endocrinologist appointment.  I spent part of last night printing my blood sugar logs from the end of March and the bulk of April (I have been keeping up with The Log Book, as promised - many blue stars on my chart).  I noticed that while I've been feeling like my control has been relatively good, I've had some zinger highs and a few trenches in the last 90 days. 

For whatever reason, I'm not dreading this appointment.  Oddly enough, I'm looking forward to spending the day in Boston, even if I will be at a hospital for much of the day.  Going to Joslin forces my brain to realign, and it always makes me feel hopeful.  I've been a patient there for over twenty two years, and it feels oddly like home.

They'll take an A1C, and I hope it's finally ringing in at NHB Range.  But my doctor has expressed more interest in having my numbers stable, instead of "good" as a result of averaged highs and lows.  She'd rather see me holding strong at a 140 mg/d as opposed to pinging from 300 mg/dl to 40 mg/dl. 

I'm not sure how I feel about an A1C result being the definitive measure of my diabetes control.  (Apparently Lindsey at Blogabetes has had the same thoughts.)  Is this a state of mind I've decided upon as a result of a result over 7%?  People talk about the estimated average glucose (here is a dizzying article including lots of math and here is an online calculator that keeps the math hidden where it belongs), but is it a true indicator of how I'm running?  And what is this fructosamine test I keep reading about?  What is the best way to tell if my body is healthy?

I'll have these tests today and I'll run through my list of questions (including, but not limited to, what can I do about this relentless tendonitis, is my blood pressure well-controlled enough for pregnancy, and do I really need to cut out ALL the coffee from my diet as I move forward here?)  I feel like I'm in excellent hands at Joslin, and I'm ready for whatever today has to throw at me.

(In the meantime, this had me mesmerized for quite some time yesterday.  I wanted to dive into the middle of that couch and snuggle every last one of those furry messes.)

April 07, 2009

Diabetics Running Amuck in New Haven.

I'm a road warrior ... or at least I was this weekend.  And it all started on Friday night, when I met Manny Hernandez for dinner in New Haven, and we were joined by Adam. 

Manny, Adam, and Kerri in New Haven.
 
Plenty of wine, beer, and coffee later (coffee was me - had to drive to Rhode Island after dinner), the three of us were knee-deep in discussions about Dexcoms, diagnosis dates, and our first low blood sugars.  These guys are true kindred spirits and excellent dinner dates. 

One thing that came up was our "before" and "after" with diabetes.  For Adam and Manny, they were both diagnosed in their late 20's, early 30's, respectively.  For me, I was diagnosed when I was in second grade.  Their "diabetes before" included decades of memories and a certain sense of self, not to mention memories without the disease.  My "diabetes before," for better or worse, doesn't include more than a handful of childhood memories without the disease, and my sense of self is coiled around some aspects of diabetes.

"What's better, though?  I mean, there are pros and cons to both and I don't see a definitive 'yay' to either, honestly."  I drank my second cup of coffee and let the caffeine spin around in my brain.

A lot of the people I'm in contact with that have diabetes were diagnosed in their childhood years - Howard at dLife, Christel, most of the Fairfield County dinner ladies - so they are dealing with the same "lifelong" diabetes as me.  But I've also met many late-onset type 1s - the LADA crew, as I fondly call them and then subsequently picture a fire engine - and their life-altering diagnosis must be so jarring, coming into their lives later.  Adjusting to diabetes wasn't much of a challenge for me because it's almost always been there.  I only had a year or two of elementary school before I was diagnosed.  I can't imagine finishing college and then being forced to change everything midstream. 

But I will admit to a bit of a pang of envy as I tried to remember my first low blood sugar while the guys described the recent memory of theirs.

"I'll have to ask my mom," I said.  "She'll remember." 

It's not a debate, believe me.  It's not a question of "Who has it worse?"  Type 1 diabetes, regardless of it's arrival date, is its own cyclone of discovery.  But the discussion made me realize how long I've had this and how old I'm not.  And when people talk about cures, how lives will be changed when a cure for diabetes is found, and even though I don't often think about a cure, I can't help but happily muse about "diabetes after."

I've kept the tags on for 22 years, just in case I need to make a return.  ;)

March 13, 2009

My Mom Says Hi.

I love my mom.It's no secret that my mom is a huge part of my success as an adult with diabetes.  Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me. 

My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again.  Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal." 

From My Mom: 

Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post.  What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)

The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.

Parents are responsible for the well being of their children from birth to when they  are able to live on their own. (Not that it stops us from worrying.)  Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.

Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.

I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun?  But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!

I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!

Thanks, Mom.  For everything. 

March 11, 2009

Diabetes Back in the Day.

Last night, I found a box of old diaries.  I've been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content. 

It's strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I'm not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a "baby." But Butthead said he couldn't do it because he was "diatetic."  The teacher reprimanded him by saying, "That's DIABETIC, and yes you can do this."  I'm not exactly sure why, but that comment bothered me.  Alot.  I think it's because I'm so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about 'HandyMan' on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said "diabetes" correctly. 

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn't help but overhear.  She said, "As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff."  Am I a burden to my family?  Do they resent my diabetes?  Do I have a "normal" life? 

This isn't to call my mother out for saying this.  I've heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break. 

Funny - I've always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that's confusing because I say I don't want to be treated differently at the same time.  It's weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I'm going nuts.  At least at CBC I'm not the only one who feels that way.  If I tried explaining that to my friends, they'd look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  :)

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It's a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I'm not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

(And some embarrassing diary snapshots coming soon ... once I get the guts!)

March 09, 2009

Diabetes + Stem Cell Research = Hope.

Go Bama!  Go Bama!Chris and I were talking the other day about something completely random, when he turns to me and says, "Oh, wait.  Did you hear that Obama is signing that bill to reverse the ban on stem cell research?"

"I did."  

"So?  Are you excited?"

And I thought about the last two decades.  How the veiled promise of "five more years and then ..." and still nothing. 

"I'm hopeful.  You know me, baby.  I'm almost always hopeful, but until it's actually real ..."

He gave me a grin.  "We just keep you healthy and hoping, right?  Well, this is a huge leap forward."

And today, we leapt as President Obama reversed the ban.

We'll keep hoping.  With the JDRF actively leading (and Tweeting!) the charge, and with diabetes on the national stage, progress could actually be made.  Not just a product redesign or another clever device, not just another type of insulin or another pill - real progress.   

I'd love to go from "type 1" to "type: cured." 

(I've been itching to use the past tense for a long time now.)

February 26, 2009

24 Hours with Diabetes.

This clock is obviously wrong.  Should say 7 am.7:00 am:  The alarm goes off for the first time.  I stumble from bed, find out where my pump has landed during the course of the night, wander off to the alarm clock, bang my hand against it, and then shuffle back to bed to claim another 9 minutes of sleep.

7:09 am:  Alarm goes off again.  Snooze one more time, grab my meter from the bedside table, and hope to test when it goes off again.

7:16 am:  Okay, this is it.  No more snooze, test blood sugar. Whatever the result, it kind of sets the tone for my day.  I’ll correct it, treat it, or celebrate it, depending on the number.  Calibrate the CGM, disconnect the pump, and head off to the shower.

7:20 am:  Connect CGM to my bathrobe on the bathroom door so it’s close enough to pick up a signal while I shower.  Shower quickly so I’m not disconnected from the pump too long.  Carefully dry off to keep CGM sensor and pump site from becoming loose.

7:30 – 8:15 am:  While getting ready for work, put at least underpants on to have something to hook the pump to.  Dress in clothes that make me feel comfortable, fashionable, and able to wrangle in any diabetes technology I’m trying to wear. 

8:20 am:  Grab enough snacks to get me through the day, but make sure the food is d-friendly enough to keep my numbers in line.

8:30 am:  Drive to work.  Check the CGM to ensure I’m not sailing out of range.  For the record, my car has glucose tabs in the glove compartment, in case I go low.

8:45 am:  Time to buckle down.  I’ve got my coffee, my computer, and my meter at the ready.  During the course of my morning at work, I’m testing my blood sugar every hour or so to make sure I’m in range.  Sometimes the blasted dawn phenomenon grabs me and I end up fighting a high for hours.  Other times, a tricky little low sneaks up on me and I have to down some juice and then muddle through the aftermath.  And lots of times, my body behaves and numbers hold steady.  But I still have to check and confirm this, so I’m still actively maintaining diabetes stuff.  And I usually have a snack in the morning at some point. 

Noon-Thirty: 
Lunch time.  I test beforehand, I react to this number, and I try to anticipate what I’ll be eating for lunch.  Most often, I eat carbs at lunch, either in the form of a sandwich or soup or something like that, but food is always consumed at this time.  (I get hungry!)  

1:30 – 5:30 pm: 
Work afternoon.  Looks a lot like the morning, only for me it tends to be a little more even with blood sugars and a little less even with stress levels.  (Something about the afternoons at work tend to bring on the meetings, wacky emails, etc.  Either that, or maybe in the morning I’m too sleep to mind the difference.)  Lots of testing blood sugar and/or scoping out the CGM line during this period.

6:00 pm:  Homeward bound.  But it’s not over, yet.  From here, I have about 30 minutes to change up to head out to the gym, and make sure my blood sugars are high enough to take on an hour of exercise.  (This is one of the only moments in my day when I’m intentionally a bit higher.)  Aiming to be at around 180 mg/dl, I head off to the gym toting my bag crammed with my meter, music, water bottle, CGM receiver, and a fast-acting glucose stash. 

7:00 pm:  (We’re here already?  Man, this day goes by fast.)  Gym is ovah.  Time to test before heading home to see if I need to act on a number, make sure I’m good to disconnect and take a shower. (Yes, two showers.  I hate to stink.)  A shower is followed by dinner.  Dinner is followed by testing.  Testing is hopefully followed by sugar-free pudding with cool whip or something.  ;)

From Dinner to Bedtime:  Evenings are sort of status quo, with lots of options.  Heading out for a movie?  Going into NYC for the night?  Grabbing a drink downtown?  Staying home and working on computer crap?  Perhaps some [hey, something shiny!]  Or grocery shopping, changing out the CGM sensor, cooking (ha!) ...  Whatever the hours of my evening are filled with, I’m still keeping close to my meter and maintaining an eye on my body.

Before Bed:  Go through the whole before bed routine (washing face, flossing, brushing teeth, fighting to keep the cat out from underneath the bathroom sink), and then head into bed.  One of the last things I do every night is test my blood sugar and check my pump reservoir and battery life to ensure I'm good for the night.  After that, I try to fall asleep, with all hell usually breaking loose when the cats run races at the foot of the bed around two in the morning.

Sleep:  Awesome.  Hopefully, there aren't any hypoglycemic episodes throughout the night.  If there are, the Dexcom usually BEEEEEEEEP!s until I wake up.  (No snooze button on that thing, that's for sure.)

7:00 am:  Lather, rinse, and repeat. 

A team of students contacted me and asked me to tick through a day in my life with diabetes.  I tried to do a standard day - one without a wicked low or high - but it's hard.  Variables come raining in from everywhere, and it's nearly impossible to account for all of them.

I've written those kinds of "day in the life" posts about diabetes before, but they never really capture what can and does happen.  I even attempted to do a video, but it didn't cut it, either.  It's hard to show how much instinctive management comes into play, like those moments when we don't realize we're managing diabetes (but we are). 

How would you describe a day in your diabetes life?  Or, when you try, do you get tangled in the same set of variables?  How do we describe something so random and far-reaching?

February 17, 2009

Larry Bird, At Home.

Larry doesn't let me slack.  Damnit.Brrrrrrrrrriiiiiiing!

"Hello?"

"Keeeeeeer."

"Larry!  dude, how the hell have you been?"

"Dude, don't call me out on being MIA.  You're the one who has been hiding out lately.  Eating kettle corn by the fistful.  Skipping the gym to have dinner with those Fairfield County Dinner ladies ..."

"Hey, wait a second.  I'm not allowed to have a social life?"

"No, you can, but you need to stick with the workouts.  And not just going, but like you need to mentally be there."

"What?  I go!  I'm there!"

"Kerri, you know what I mean.  Over the last two months, you have read seven books while working out.  You can't work out hard when your nose is buried in a book!"

"I'm trying to relax a little bit, too.  Managing stress just as important as exercise!"

"It totally is.  You don't think I got stressed out that January day in '85 against Portland, when I had to hit that baseline jumper at the buzzer?  But you aren't de-stressing.  I've seen you with your Blackberry while you're working out.  Your BLACKBERRY?  That's how you avoid stress?"

"Larry!  How the hell did you see me?"

"Skylights.  I climbed up on the building.  But anyway, you need to tune back into those workouts, Kerri.  You are going through the motions, and that's not going to help you lose those 10 pounds you've gained since the wedding."

"Five pounds, smartass.  And wait, did you say you were peeping through the skylights?"

"Five.  Whatever.  And yeah, the skylights are comfortable.  I usually bring headphones.  But anyway, I want to see some serious effort from you this month.  You were doing really well, and I want to see you back in better shape by the end of March, okay?"

"I can do that.  Actually, we're buying an elliptical this week for the house, so now I can do you at home."  

"That joke never gets old for you, does it."

"Nope."

"Okay, Ker.  Keep it real, and don't let me see you with that frigging Blackberry on the treadmill anymore.  Got it?"

"Got it.  Thanks for checking in, Larry."

"No problem.   Happy belated birthday!"

"Thanks!  Stay off the damn skylights."

Click.

February 05, 2009

Vlogging While Low.

A funny thing happened to me on the way to the Internet last week.  I wanted to record a vlog post on my lunch break, but my blood sugar took a bit of a dip. 

Moron that I am, I still recorded and talked my face off.  

The point I made at the end of the video is one that I've thought about a lot - diabetes is an invisible disease, especially for those of us who are younger.  Even though we are dealing with diabetes every day, it's not a disease that is visible to people on the outside.  There's a certain blessing to people not knowing we're "sick," but does it make it seem like we don't need our cure?

Oh hell yes we need our cure.

February 03, 2009

Frustrated.

I am absolutely furious.

Last night (after a very nice dinner with Karen and J), I went to bed at a blood sugar of 101 mg/dl.  My Dexcom showed a flat line throughout the night, and I woke up at 89 mg/dl.

Nice.

So I showered and got ready for work.  Dexcom has climbed to 130 mg/dl, but I took .5 u after getting out of the shower (to cover when I was disconnected), so I expected things to be cool.   Commuted to work (10 minutes) and settled in at my desk. 

But I'm already starting to climb.   

Cup of coffee - drained.   I decided not to correct the climb because I had already taken that 0.5 u and besides, I didn't want to completely compromise my new basal settings.  I needed to give this at least a week or two to see how it really worked.

Started answering emails at work.  Checked Twitter.  Sent off a few columns.  

BEEEEEEEEP!  Still climbing.

I tested and saw 189 mg/dl.  Fine, I'll correct this now.  Laced in a few units to correct and to cover my morning snack, and went back to work, headphones in a music blaring.  About an hour went by.

Then I noticed that everything seemed "off."  My eyes felt sticky in my head, like every part of my body was dehydrated.  My mouth was dry, my skin felt too tight, and I was exhausted.  The words were swimming around on the computer screen, and the papers on my desk were a blur of type fonts. 

So I tested.  And motherfucker (sorry):  364 mg/dl.

Taken with my KerriBerry - and it shows the ridiculous climb.

If I had not been at work, I would have thrown something.  Instead, I ripped the headphones out of my ear and grabbed an insulin pen from my emergency kit at work.  I dialed up a correction dose and injected into my stomach.  I wanted relief from this high - I felt like absolute garbage.

While my overnights are completely fine and stable, my mornings have turned into a chaotic tumble of terrible numbers.  I don't know how to fix this, so I am consulting my logbooks, my battered copy of Smart Pumping, and drafting a "HELP!" email to my endocrinologist.  My A1C goal of under 7% will not be achieved while these mornings are mucking up the works. 

But besides all that, I'm pissed.  These highs feel very frustrating and they aren't little, peaky "180s" but instead whopping "360s."  My ability work feels compromised, and I can't chew enough gum to get these sweaters off my teeth fast enough.   I'm drinking water by the liter and skin is so dry and so cracked that my hands started bleeding while I was typing.  I feel "sick."  That makes me mad, because for the most part, I don't feel very sick. I usually feel capable enough to move past whatever is chewing on my nerves.

Today?  I want to crawl back into bed and ride out this high under the covers, hiding from the reality of life with diabetes. 

Except that Siah is most likely face-planted into the bed.  So no hiding for me.

My only option is to relax, try to get some work done, and wait for my blood sugar to come back down.  No need to add more stress to an already-stressful moment.  But when I get home from work tonight, I need to figure out what needs to be done.  This can't go on.  Not for even one more day.  I have a birthday to celebrate this weekend (mine!), and I'm sure as hell not going to do it at 360 mg/dl.  ;)

January 27, 2009

Not Perfect, Never Claimed To Be.

Diabetes perfection?  Nope.A few weeks ago, when I was gearing up to hear my A1C results, I admitted freely that the wedding stress of eight month ago really left it's mark on my numbers.

And over that weekend, I received several emails from people that said, "Me, too!  I have trouble lowering my A1C too, but every step towards my goal is a step in the right direction!"  I also received emails just wishing me some luck on controlling these numbers.

Then there was the one that asserted "A person in your public-facing position should have better control of their numbers.  You are a role-model and someone that should set an example to these young children.  An A1C of 7.5% is not good enough."

And then there was a comment from Dr. Bernstein:  "An A1c of 7% corresponds to an average BG of 180 mg/dl.  Not a wise target for someone who wants to become pregnant.  A normal A1c is 4.2-4.6 % -- not what the ADA promotes.  Pregnant non-obese non-diabetics usually have blood sugars below 70mg/dl."

I'm not sure what kind of impression people get of me from reading this blog, but if I've made the mistake of fooling you into thinking I know how to perfectly control my diabetes, that unfortunately is not the case. I'm not a role model, not like that.  I don't have perfect diabetes control and on some days, I'm not sure what to do next.  I am trying to fill in for my islet cells, for an organ that went rogue on me, and it's not a science I've perfected.  I'm working hard, every day, to achieve a level of life and health balance.

So to the folks who think I should have an A1C of 5.0% simply because I blog about diabetes ... for those who are reading and clucking your tongue against the roof of your mouth - "Oh, her baby is going to be upset in there if she has an A1c that high when she conceives." - I invite you to stop clucking around.  (Puns.  Cannot resist.  Sorry.)  SUM is a public blog, and I've made the choice to make my diabetes life a public one, but I'm not a doctor.  My A1C is not 5.0%.  I don't have this "all figured out."  (And I sometimes eat E.L. Fudge cookies when I'm frustrated.)  

But blogging has provided me with a support community I couldn't have imagined.  I can't even begin to tell you what kind of an impact you all have had on me, proving time and time again that I am not alone with this disease.  You guys make me feel connected, secure, and confident that every bump along the way can serve to educate me and make me a tougher (E.L. Fudge?) cookie. I appreciate the support, and I appreciate the criticisms because they are more than valid.  But don't expect me to have this thing completely controlled.

I want to be healthy, and I want to enjoy a healthy pregnancy in my future.  I am working to bring my body to a state of optimal health, but I'm not lying to myself, or to my readers, along the way.  Shit.  Gets.  In.  The.  Way.  I can't pretend to be perfect, but I am honest about my shortcomings, and I am trying to do better for myself and for my family

If you want to leave comments about how you think I should be better controlled, I'll agree with you.  If you want to peck at my armor and find the kinks, you won't have to look very hard.  I put all of this out there knowing the risks and the judgments that come with a public-facing blog.  And I appreciate that people care and offer their opinions and perspectives (both good and bad), and provide that community I was craving when I felt alone. 

But my diabetes, shared with the Internet or not, remains mine. 

Remember that before you pick up a stone.  My house isn't the only glass one.

January 19, 2009

Punctuate'd!

Now, off to find out Which Flavor of Jelly Bean I happen to be.While I was checking out the Twitter feed last night, I noticed that someone had posted one of those blog quizzes:  What Punctuation Mark Are You?

Normally, I scoff at these quizzes (and then scurry off to find out Which Backstreet Boy is My Soulmate or What Kind of Ballpoint Pen Am I).  But the concept of this one intrigued me, as a writer and editor.   So I took the stupid quiz and it turns out I am a comma:

"You are open minded and extremely optimistic.  You enjoy almost all facets of life. You can find the good in almost anything.  You keep yourself busy with tons of friends, activities, and interests.  You find it hard to turn down an opportunity, even if you are pressed for time.

Your friends find you fascinating, charming, and easy to talk to.
(But with so many competing interests, you friends do feel like you hardly have time for them.)

You excel in: Inspiring people
You get along best with: The Question Mark"

And this is all well and good and fortune cookie-esque, but it made my health writer mind vault right into "What Kind of Diabetes Punctuation Mark Are You?" 

Some days, I'm a question mark, constantly wondering.  "What caused this high?"  "How do I figure out this basal rate?"  "What kind of foods can I eat today?"  "Am I a bad person because I ate that?"  "What the hell is that thing BEEEEEEP!ing for again?"  "Where is my meter?"  "Is that because I'm low or because I'm me?" 

Other days, I'm an exclamation point, frustrated and a bit burnt out.  "I am mad!"  "I don't want to deal with this stupid disease anymore!"  "I want to go to sleep without all these devices!"  "This isn't fair!"  "I quit!"  And also, "Yes, I can eat that!"

Moments where I can't separate myself from my disease become saturated with hyphens.  It's all "diabetes-related" and "high-high" and "blood sugar-wise."  A doctor-patient relationship.  Am I Kerri-with-diabetes or Just-Kerri?

There are days when I am a comma, taking a brief pause before making a decision.  "I just treated the low but I still feel low, so I should wait before eating something else."  And on particularly confusing days, I can be a semi-colon, taking an even longer moment to make sense of something.  "I'm low and I've treated it; however, I exercised, ate something sugary, have active insulin, still feel the low, and have no idea what to do next."

But overall, my diabetes is punctuated by an ellipse.  I manage the moments, but it's always a question of the unknown.  Yes, this is the "now," but what happens later?

If I eat this, I could ...
If I go to sleep on this blood sugar, I might ...
If I spend the next five years ignoring this, I may ...
If I don't do this, I will ...
If I'm happy and healthy, my life will be ...

Every day is different, and every diabetic is different.  And every moment is left with an ellipse, trailing off into the unknown.  it can be very easy some days, and completely overwhelming on others.  Sometimes I tire of taking the editorial red pen to my diabetes.  And other times, I need to remind myself that this isn't something I can ignore. 

I think that the most important thing I can do is ... live.

January 14, 2009

A1C - Sigh.

I had my A1C drawn on Monday.  Late.  I haven't had one since like June and that's waaaaay too long between results.  The last one, taken a few weeks after we returned from our honeymoon, was extremely high (or at least extremely high for a woman who is trying to gain better control as she plans for pregnancy ... in third person) and I was very reluctant to have another one done.

I hate negative reinforcement.  I don't like that feeling of "Hey, you worked hard.  You really put a lot of effort into managing this disease.  Here's your shitty A1C."  And that feeling of "ARGHHHHH!" is what I'm vlogging about this week.   

(Also, guest appearances by Siah, the Dexcom, and some bed dinosaurs.)   

January 12, 2009

Diabetes Rebellion.

The first rule is ... test!When the Dexcom sensor goes kaput, I usually take a day or two off before slapping a new one on.  Sometimes I want to let the site heal a bit and reuse the same location, and other times I just want a quick break before committing to it again for another six days or so.

Most often, these "days off" fall on the weekends.  I usually put a new sensor in on Sunday nights or Monday mornings before work and wear it straight through to Saturday morning. At work, at the gym, and throughout the night, that sucker BEEEEEEEP!s when I'm high or when I'm trending low, and I react accordingly.  I don't test as often on these days - maybe five times a day versus my pre-Dexcom 11-15 times - but I feel like I have a good handle on things, for the most part.

So why is it that, on weekends, my blood sugars fall to pieces?

I can't figure it out. 

And then again, I sort of can.  Over the last month or so, I've become like a diabetes rebel on weekends.  I go to bed at two or three in the morning.  I sleep until 11 am.  I eat French Toast (with sugar-free syrup, but still - holy carbs) on Saturdays and my intake of coffee is as constant as insulin.  I skip the gym and watch tv and generally become a lazy bum.

And, of course, this all goes down when I'm sensor-free.

This particular weekend, I had a glorious 374 mg/dl and a sneaky 38 mg/dl.  We went to the movies on Sunday afternoon to see Valkyrie and I hadn't tested recently before heading into the movie.  During the course of the film, I felt extremely sleepy and felt my eyelids becoming heavy at times.  After we drove home, I tested and saw a grim 374 mg/dl staring back at me.

Fantastic.  "I felt this one, yet I still didn't test.  What the hell is wrong with me?  I'm pissed - it's like I start sliding down that slope and it all goes amuck."

"Did you bolus?"  Chris asked.

"Yeah, I just did.  I just feel stupid."

"You'll come down.  It's okay."

A few hours later, after hanging out at the house, I tested arbitrarily.  I felt completely fine - no headache, no sweaty forehead, no shakiness.  I wasn't pale, my eyes weren't heavy-lidded, and I didn't feel lightheaded at all.  Yet a 38 mg/dl was the result that greeted me this round, and I didn't feel even a glimpse of a symptom.

Tested again and confirmed:  34 mg/dl.  Definitely low.

I drank juice, I sat on the couch, and I waited patiently (or at least patiently for me, which meant I didn't throw anything).  And as I waited for my blood sugar to start coming up, the symptoms came slamming into me.  I was dizzy, to the point where I felt unable to stand up.  Chris came to talk to me and I couldn't string a sentence together, only able to communicate in short bursts.  "Low.  Yes, drank juice.  Waiting.  Love you, too."

From 374 to 38 - a drop of over 330 points.  This doesn't feel good and it isn't healthy for my body, yet it happens sometimes.  Even when I'm paying attention and "following the rules," there's still something I've missed.  I didn't test often enough.  I neglected to account for some of the food I ate.  I took the weekend off from the Dexcom.  I'm battling myself.  It's a diabetes Fight Club.  (The first rule is to not blog about fight club, but I've already blown it.)

I'm feeling frustrated these days and I'm not sure where to go from here.   But at least with this kind of rut, I can flip things towards "change" at any moment.  All ... I ... need ... to ... do ... is hit the switch.

January 08, 2009

The Year of the Log.

My mom and I used to fill in my log book the night before Joslin appointments, clicking through the glucose meter's memory and writing results into a steno notepad.  

"Use a different pen, Mom," I'd encourage her.  "That way it will look like we did this on different days."

"Kerri, grab that coffee cup and smudge a bit riiiiiiight ... here."  

My logbooks looked like treasure maps from centuries past, complete with fire-singed edges and wrinkled, tea-stained corners.  And my then-endocrinologist at Joslin was no idiot. 

"Your log book is very ... weathered," she'd say with a smirk.  "Has it seen far-away and exotic countries?" 

Blush. 

I've been diabetic for over 22 years, and keeping track of my numbers has been a challenge for me and my management team since Day 1.  I need to turn this trend around and actually keep track of these numbers because they mean so much on their own, but they mean so much more when they're viewed as a big picture.  Logging is the one big resolution I have for 2009, and I said I was going to try.  So I'm trying.

I needed to get myself all incentivized to log my blood sugars.  Logging, as I've mention a million times before, is THE hardest thing for me to reign in.  I test regularly, eat well, and exercise, but I have a mental block about logging numbers.  One that I need to get over.

So I did a very grown-up thing.

I bought stickers.

Stickers work for adults too, right?

 And made myself laugh with a pun.
 
My not-so-clever pun about my diabetes log book.  I'm trying, though!

This is going to be my Log Book, and my last week's blood sugars are printed out, three-hole punched, and all nice-nice in there.  I had the chance to look at my glucose average (173 mg/dl, thanks to a 404 mg/dl after a pump site change), my glucose numbers within target (62%) and the number of hypos I've had (5).  Rough week.  I'm determined to look at better results next week and say, "Ah, there it is- I've hit my stride."  Or at least, "Hey, there weren't any numbers over 240 mg/dl and you only had one low."   

I'm hoping I can stick with printing out my blood sugars every week, and if I can stick with the program, I will slap a star on my calendar.  Stupid?  Maybe, but it's tangible proof that I DID IT.  And hopefully by DOING IT, I can hold myself accountable for my management and make some improvements.  I won't know unless I TRY.  In all caps.  That's how I roll.

So, armed with stickers and silly puns, I'm making 2009 "The Year of the Log."   And I think that I'm telling you guys in efforts to make me stick with it.  Knowing that YOU know makes ME feel like following through isn't so tough.  IN ALL CAPS.  ;)

December 22, 2008

Dexcom Pros and Cons.

As with everything diabetes-related (or maybe just life-related), there are pros and cons to this whole continuous glucose monitoring thing.  For those of you who are still thinking about whether you want to make this CGM leap, here are my pros and cons of CGMing to shed some light on the subject.

CGM CONS:

The sensor is bulky.  The sensor isn't tiny (about the size of an iPod shuffle), but it's held securely down by the adhesive gauze, so once it's in place, I can't feel it.  This is a big deal for me, since the Minimed CGM was painful for me.  However, it's visible underneath the sleeve of my shirts when I wear it on my arm and it's slightly uncomfortable to sleep on when it's on my back.

Can be "too much information."  Having blood sugar updates every five minutes is awesome, until you find yourself checking it every five minutes and obsessing over each result.  I needed to be psychologically ready for a CGM, and I need to be able to keep it from ruling my life. 

Receiver is enormous.  The Dexcom receiver is pretty big - bigger than my Blackberry - and it's cumbersome to wear.  I usually keep it on my desk, in my purse, or in my coat pocket when I'm out.  At night, I strap it to the headboard of the bed using a headband.  Not a big deal, but it's hard to miss.  Especially when it ...

Beeeeeeeeeeeps! The beeps are LOUD.  Mega loud.  Loud enough to wake me up during the night if I'm low (thankfully), but during the quieter parts of the workday, it's loud enough to distract my coworkers.  I recognize that the beeping is important, but it's not always convenient.

Adhesive sort of sucks.   This is my biggest compliant about Dexcom sensors.  The things do NOT want to stay stuck for more than five or six days.  I shower twice a day (before work and after the gym) and I wear clothes that rub up against the sensor, no matter where I place it.  Even with SkinTac, the edges of the sensor start to peel up at about the five day mark, and it's loose and ready to fall at the 7 - 8 day mark.  (And sometimes, the SkinTac and the Dexcom adhesive and a not-so-helpful bandaid create a huge and ugly problem:  frigging ouch.  See the photo on Flickr for a full rundown.) 

Ouchy Dexcom

I do not like when a $60 sensor starts to peel away.  This is highly annoying.

Insurance coverage battles. While others have had their requests approved without batting much of an eye, my insurance coverage for the CGM had to be fought for.  I battled my insurance company for over eight months before receiving my approval letter.  The insurance hurdles are a definite con, and might make some people reluctant to fight for their right for a CGM.  (Cheerleader note:  But don't let it stop you!  Go for it!)

Doesn't feel "sexy."  (Yes, I know this "shouldn't matter," but these are my personal pros and cons, so roll with me, okay?)  With the pump infusion set stuck into one part of me and the CGM sensor in another, wearing two devices doesn't exactly feel like I'm ready to model for Victoria's Secret.  There have been plenty of times when a moment has been interrupted by the CGM beeping or the sensor getting stuck on my clothes and whatnot. 

CGM PROS:

Low blood sugar safety net.  This was a huge part of why I wanted to use a CGM in the first place:  hypoglycemia unawareness.  I was exhausted and frightened of the lows at 3 am, so having the added safety net of the CGM has been a huge improvement.  The CGM does its job and protects me from plummeting blood sugars.  When Chris is away on business, he prefers that I wear the CGM to keep an eye on those lows.  It makes me feel safe, and I value that "pro" above all others.

Helps me avoid staying high.  My body reacts to blood sugars that are over 260 mg/dl or so, but those 160's and 180's often go unnoticed.  The Dexcom helps me wrangle in these "minor" highs and tighten up my blood sugar standard deviation overall.  Staving off both the lows and the highs will be particularly helpful during my future pregnancy.

Excellent for exercise.  I go to the gym at least five days a week, and my workouts range from walking/jogging on the treadmill to cardio circuit training.  The CGM has been AWESOME at detecting fluctuations in my numbers while I work out, helping me avoid those crash-and-burn lows at the gym and also the highs that sometimes crop up after a hard workout.  (And it was great on our hikes when we went to Acadia - excellent tool!)

Driving safety.  I spend a lot of time in the car driving back and forth to RI, and the drive time is anywhere from 2 1/2 hours to 4 hours (depending on traffic - I hate CT highways).  Having the Dexcom in the center console next to me while I travel is another big bonus.  With hypoglycemia unawareness and blood sugars that seem to be affected as much by my moods as by what I'm eating, having an extra eye on those numbers is crucial to keep be safe behind the wheel.

Integration-free works for me.  I trialed both the Minimed CGM and the Dexcom and for me, the Dexcom being a seperate device worked best for me.  With the Minimed CGM, I couldn't hear the pump alarming in the night because it was buried underneath the blankets.  Having the Dex receiver separate from the pump is convenient for the nighttime alarms and also if I want to avoid having to deal with the CGM for a little bit.  I can shove it into my purse, bury it in a desk drawer, or even walk away from it for a little while if I want.  I like the freedom from being beeped at sometimes.  It sounds counterproductive, but in the longrun, this is a bonus for me.

Trending and tracking.  Here's the point of CGMs - to track the trends of my blood sugars.  The Dex doesn't replace my meter, but instead works with it.  I test on my meter and see a result of 100 mg/dl, but with the Dex, I know I'm "100 going down," "100 going up," or "100 holding steady."  This makes it easy to go into long meetings at work without fearing a crash, and also lets me go to bed at a blood sugar of 90 mg/dl with confidence.

Pretty darn accurate.  I don't expect this thing to be right all the time.  I already have my head programmed to accept that a CGM doesn't replace finger sticks, so when things don't match up all nice-nice, I don't flip out.  Overall, though, I've found that the CGM rides pretty close to my meter.  Dex works better when I'm running a bit steadier, so it's actually a weird sort of incentive to maintain better control to retain the integrity of the sensor.  Don't ask me to mentally make sense of that - I need to take whatever motivation I can and run with it.  ;)

But it does feel sexy.  And this is the flip side to that "con" coin.  The Dexcom is sexy.  It's stuck to me to gain better control of my diabetes.  Good control helps everything from my weight to my hair to my internal organs to my smile.  Being healthy is sexy as hell.  And being confident enough to wear this machine, despite its cons and because of its pros, makes me feel stronger all the way around.  For me, after weighing all these pros and cons, the CGM is definitely worth it.

Conquering diabetes, damnit.

Readers Beware!!:  These are MY pros and cons.  I chronicle my personal experiences with diabetes here on SUM and I'm not a doctor or a CDE or a medical professional of any kind.  I have decided to use the Dexcom CGM after trialing both the Minimed and the Dexcom, but I know plenty of people who are using the Minimed CGM without issue.  For me, the Dexcom was a more comfortable fit into my life, literally and figuratively.  It's all about personal preferences, and these are mine. 

If you're thinking about trying out a CGM, I recommend trialing as many kinds as you can before making an informed decision.  Your mileage on these devices will vary, so it's important to find out what works best for YOU.  Contact your CDE and see if you can schedule a week trial session with different devices. 

If you want to share your perspectives, feel free!  I love that the online diabetes community has become a real source of information for diabetics everywhere who are looking for real information - we are the true mavens of patient experience!

December 12, 2008

Low Blood Sugar Woes. (And Whoas)

Next week will be better.

Because this week has sort of sucked, on the diabetes front.  

On Wednesday afternoon, I stopped home for lunch to make a quick sandwich and grab my laptop. It was a warmer day, so I felt a little sticky as I brushed my teeth in the bathroom.  I was delaying putting on my coat.  My forehead was damp.  And the sounds of cars going by outside and the radio in the living room were tumbling around in my ears like socks in the dryer.  My brain knew I was low.  My body was slower to acknowledge this.  I went to the fridge to get the juice, my legs operating much slower than usual.

And I stood there with the fridge door open for several minutes, just staring into it and trying to remember what I was doing.  I kept looking at the juice, my brain poking at me frantically - "Um, some sugar would be nice.  Why don't you get that?" - but I wasn't moving and instead stood there a few minutes longer, letting the cold wash over me as I found myself sitting on the floor.

I've been diabetic for a long time.  Even I should know better than to let my lows eat my brain like this. (Zombie lows?  Whoops, digression.)  Finally, I fully tuned into the fact that I was low and I drank juice until it ran down my jawline. 

I tested.  45 mg/dl.  Stupid lows.

Low blood sugar:  45 mg/dl.  Damnit.

I can rebound physically from a low that happens in the middle of the night or the wee hours of the morning, but the aftermath of a low during the day sucks the life out of me.  I felt exhausted and shaky for several hours afterward.  These moments make me angry at diabetes, because there is so much out of my control.

Last night, at our holiday party, it happened again.  I was talking with my husband and some coworkers and drinking a diet soda (avoiding the alcohol because ... well, then I may have been inclined to sing karaoke and that would have been a crisis), but then the headache came on.  Again with the damp forehead.  Again with the dizzy feeling and the swimmy sounds in the room.

"Excuse me, I'll be right back," I said to Chris and our friends, walking over to the open bar.

"Orange juice, please?"  I used the bar to prop myself up a bit, hoping no one was noticing how rattled I looked but hoping someone would notice if I needed them to.

"And vodka?"  The bartender put some ice in my glass.

"No thanks.  Just orange juice, please."  He gave me a big glass and I downed it as quickly and discreetly as I could. 

Everyone knows I have diabetes.  It's not discussed and it's not avoided, but it's common knowledge.  Yet I didn't want anyone to see me in that vulnerable state.  The waves of nausea and light headedness were washing over me, but I did what I could to appear "normal."  It doesn't make sense - these people know and like me and I have nothing to be ashamed of, yet I still felt warm with both hypoglycemia and embarrassment.

It passed.  It always passes.  And the night went on without issue.  (And we had fun.)

But these lows.  I can track my blood sugars and attempt to plot the trends. I can wear the CGM and test often.  I can carry fast acting glucose and be all "responsible."  But they still come.  Prevention is a good effort, but it doesn't completely eliminate these nasty lows.   

it's been a crappy week.  I have felt "off" all week long and my the fallout has been visible in my numbers, my mood, and my motivation.  I hope an easy weekend will realign me. 

Next week will be better.    Next week I will be better.

December 10, 2008

Stupid Diabetes Move.

Glucose meter, home aloneMy brain hasn't been attached this week.  I overslept one morning and was late to work.  I left my wallet at home another day.  I completely blanked out on a meeting I had at work.

And yesterday, I left my meter at home by accident. 

You would think that working in a diabetes media company, with another diabetic, would have me existing in a constant state of able-to-be-bailed-out.  But no!  I went foraging for my meter around 9:30 in the morning and couldn't find it.  I dumped out the contents of my work back on the floor (making a clattering sound against the concrete, but my coworkers have since learned that I'm a disaster and they anticipate the random noise), but couldn't find that blasted black zippered case.  

"Where are you?"  I said out loud.  (Coworkers are also used to me talking to myself.  Poor coworkers.)  My meter didn't answer.  Apparently it did not hear me because it was rested quite happily on top of the basket of folded laundry in my bedroom at home.

"Hey, Howard?  Do you have an extra meter hanging around?"  Nothing like paupering for diabetes supplies to the CEO.  While he didn't have an extra meter, he did have a strip I could use in my back up Freestyle meter. 

"Do you need more than one?"  

"Nah.  I'll go home at lunch and find my meter.  No problem - thanks!"

It was a weird feeling of relief to finally test.  Not having the option of knowing my numbers made me feel uneasy.  And it was an even weirder feeling of unpreparedness.  I felt like the diabetes anti-Boy Scout.

And then Real Life took hold.  A meeting that ran late prevented me from going home for lunch, and I had to instead pop out quickly to grab a bite from the deli down the street.  Howard (and his diabetes supply stash) had to leave the office for a meeting for the rest of the afternoon.  Diabetes took a big time backseat to the rest of the day, and all of a sudden, I realized it was 3:00 in the afternoon and I hadn't tested since 9:30 in the morning.

And the Dexcom sensor fell off on Monday evening and I've yet to stick the next one back on.

I felt like I was driving blindly - nervous about eating anything with more than few carbs because I didn't want to chance the spike, reluctant to bolus because I feared not feeling the low.  Yes, I should have gone home to get my meter.  Yes, I should have been more prepared.  Yes, yes, yes, I did the self-nagging and the guilt-tripping.  But NO, I wasn't prepared.  I wasn't even remotely ready.  It was the diabetes equivalent of that dream where you are naked in you 10th grade classroom.

I've talked about this before, but there's a LOT of packing that goes along with diabetes.  A weekend home in RI is never just a bag with clothes and my toothbrush - I bring a whole backup medical kit to account for everything from pump failures to yeast infections (thank you, stash of probiotics!).  And my work desk is more than dLife papers and columns - there's a rotation of meters, infusion sets, and other diabetes supplies kicking around.  I'm always preaching about being prepared, and for the most part, I am. 

Those moments of being caught with my meter down prove why being well-stocked is the best option.  But blah blah, it's not always that easy to get it right every time.  Yesterday sucked, and I felt like a fool, and I was rewarded with a blood sugar of 300 mg/dl when I came home.

I'm off my game this week.  I think it's because I forgot to call Larry on his birthday.

December 08, 2008

Robot Warrior.

Diabetes hardware is FUN!  ;)I love a good bargain.  So when I saw the BCBG Max Azria gray sweater dress on the rack at Marshall's for $30, I had to grab it.  (Consider it my economic stimulation effort.)  The dress is a soft gray with a flattering A line cut and a nice V neck.  Clingy fabric.  Fun.

But.

This dress doesn't hide much.  And it definitely didn't hide anything diabetes-related.

Normally, I'm able to hide my diabetes hardware to the point where I feel comfortable - the sock trick lets me wear the pants I like and not have to worry about pockets, the bra trick works with most dresses, and when it's a big event, pockets can be created

But this gray dress wasn't having it.  The pump set on my outer thigh stuck out.  The tubing snaking up the side of my body and into my bra (where the pump was clipped) was completely obvious.  And the pump itself looked like a cell phone shoved in my shirt.  Not okay.  Nevermind the Dexcom sensor on my right arm that the clingy dress fabric was gathering around. 

"For crying.  Out.  Loud."  I shifted things around to see if I could get the dress to settle smoothly, but every piece of diabetes hardware was on display.  

I don't care if anyone knows I have diabetes.  I don't care at all because it's not this big deal that I want to hide from people.  I am very open about diabetes and I don't mind explaining things to strangers and friends alike.  This is evidenced by my blog, my job, my decision to network with others like me.

What bothers me is when I want to look "normal."  I want to put on a dress and not grapple with wires.  I want to grab a small clutch purse that doesn't howl with a "BEEEEEEEEEP!" when my blood sugar drops or rises.  I want to be able to have a beer at the bar without fumbling to bolus.  I felt frustrated and furious and like a diabetes robot warrior.

"But isn't the pump best for you?  And the CGM?  Isn't that best?"

I know what's best for me.  I completely understand that using a pump with the help of a CGM and all the other technology I have access to is best for me, but in that moment, I wanted it to all be invisible.  I wanted to be living with that version of diabetes that everyone on the outside thinks is so manageable.  "Oh,  you do so well with it!  You seem so well-adjusted!"  But inside I'm screaming. 

Frustration got the better of me and I replaced the pretty dress with jeans and a black shirt.  (This is the abridged version - the full version included me creating some unique curse word combinations and throwing the dress into my bag in a satisfying tangle.)  Shoved the pump into my sock and hide the CGM receiver in my purse.  Tried to forget that the pump on my thigh and on my arm wasn't natural.  Tried to remind myself that this is part of diabetes and part of trying and part of my life.  Tried to remind myself that tomorrow is another day, and it will be another day with diabetes, so rebelling against it won't do me any good.  Acknowledge, accept, and move on.

The dress is balled up in my weekend travel bag, and I think I'll leave it there for a few weeks.  Maybe I'll make another attempt.  It could look different on a different day.  I could feel differently about it.  The emotional ebb and flow of chronic disease management is ongoing.

Some days, diabetes is a better fit than on other days. 

November 20, 2008

Just Another Morning.

Wake up with a start as the alarm begins to blare,
Groggily come to and push aside my mussed-up hair.
Reach out to the nightstand and retrieve the zipper case,
Fumble with a strip and finally get the thing in place.
Lance my finger, squeeze a bit, and for five seconds wait,
Hear the beep, watch the screen, and see the "108."

Disconnect the pump with a quick and easy snap,
Grab that little plastic thing that I call a "pump cap."
Bring the Dexcom with me and connect it to the door
So I can shower, get all clean, and data will still store.

Towel dry - so careful, watching for the set and sensor,
Grab my robe and reconnect to the insulin dispenser.
Blow dry hair, drag a comb, and make attempts to dress,
Aim for outfits that conceal my pump with learned finesse.

Make my lunch and grab some snacks, minding carb-y grams -
Greek yogurt, green beans, protein bars - my morning snack grand slam.
Throw it all into my bag - I just have one more thing to add!
Toss in a tube of glucose tabs for all the lows this week I've had.

Snake the pump tube down my leg, tuck the pump inside
The trouser socks I love to wear - perfect for pump to hide.
Check the Dexcom to see for sure that I'm okay to drive,
Pet the cats, throw on my coat, and I'm out the door in five.

So much is diabetes, but it isn't my whole life.
I'm a daughter with type 1; I'm a diabetic wife.
It's in the fabric of my day, in the subconcious of my mind.
It explains so much of what I do, but I am not defined.

November 17, 2008

World Diabetes Day in NYC.

Last Friday, on World Diabetes Day, I had the pleasure of spending the day with Fran Carpentier at the Young Voices event in NYC.   Discovery Health showcased the video submissions from people with diabetes and they had a talented panel of guest speakers and ambassadors, including Lee Fine from FiveHumans, the adorable Charlie Kimball of racing fame, and Miss Black USA Kalilah Allen-Harris

I had some great interviews with these folks that I'll be posting over the next few weeks, but in meantime, I wanted to share some photos from the event.

World Diabetes Day in NYC 

Former Mets player Todd Zeile, Fran Carpentier, Kerri Sparling, ESPN report Brian Kenny, and country star Steve Wariner 

Fran, Kerri, and Kalilah. 

Fran, me, and Kalilah Harris

Charlie Kimball and Kerri Sparling 

Charlie Kimball and me.  :) 

A big part of what was discussed at this event was the DAWN Youth Initiative, which is dedicated to improving the level and conditions of psychological support for kids and young adults with diabetes.  The DAWN Youth WebTalk survey was conducted in partnership with Novo Nordisk, the International Diabetes Federation (IDF) and the International Society for Pediatric and Adolescent Diabetes (ISPAD).  I had a chance to speak with Dr. Barbara Anderson, DAWN Youth Advisor (and a former part of my own personal diabetes care team at Joslin!) about diabetes, depression, and how we deal with diabetes.  "It's important to be in touch with other young people with diabetes," she said, and I thought of all of us here in the diabetes blogosphere.  Our interactions with one another are crucial to our diabetes management.  We keep one another sane!

World Diabetes Day was recognized across the world and the outpouring of support was tremendous.  Over 1,000 landmarks were lit in blue.  Those of us in the blogosphere wrote about our diabetes lives, created videos, and even expressed ourselves in song.  But there is still a lot of work to be done (check out the comments on my YouTube video for examples of miseducation and ignorance).  And every day, we all help to raise awareness in our own ways.

How did you celebrate World Diabetes Day?  Feel free to post your link in the comments section.  And with almost two weeks left in Diabetes Awareness Month, how will you close it out?  (Should I dye Siah blue?  Somehow, I think she'd find a way to thwart me.) 

(And, for the record, I wore a bright blue scarf on Friday to show my support.  But it was muggy as hell in the city, so the scarf ended up crumpled up in my purse instead of around my neck.  I tried, I swear!)

(One more post script:  Today is my brother's birthday, so wish him a happy one!) 

November 10, 2008

Waldorf'ing It.

This past Saturday, Chris and I had the absolute honor of being Fran Carpentier's guests at the JDRF Promise Ball in NYC.  At the Waldorf=Astoria hotel, where I felt waaaay out of my league but thrilled to be there. 

We don't have the opportunity to rock the black tie very often, so it was a fun treat to get all dressed up again.  

Kerri and Chris, black tie and all!

Chris and I at the gala, feeling rather spiffy.

Fran, Kerri (me), and Gina

Fran Carpentier, me, and Gina Capone with our big grins.

Gina, Tom, and Kerri (me)

A D-Blogger sandwich, with Mr. Tom Karlya at the center.

The night was beautiful, with friends and wine and many laughs.  With Mary Tyler Moore speaking to the crowd from years of experience with type 1 diabetes, and with Elaine Stritch backing her up in style, the crowd was impassioned, inspiring, and ready to spend. 

And oh how they spend.  I have never before seen 2.5 million dollars raised in the matter of an hour.  One quick lift of a sign gifted the JDRF with tens of thousands of dollars.  I sat there in awe, trying to keep the tears out of my eyes as people gave so much.

I don't know how many people in that room were living with diabetes themselves, but I know that at my table alone, Fran, Gina, and I tested our blood sugar before eating.  I know that there were others in the room who were also living with this disease, like my friend Jon who I worked with at dLifeTV, and Allison, and several children who would grow up, just like we did, with type 1 diabetes.

The JDRF is a remarkable organization, but there's still so much left to do.  I've been diabetic for 22 years and I have not yet seen a cure.  Fran has been diabetic for 40 years, and has not yet seen a cure.  Isn't it time?  Time to tell people that diabetes doesn't go away, that it can't be ignored, and that it deserves the attention of the nation?

November is Diabetes Awareness Month, and we need to remind our country - our world - that we are still waiting for our cure.  Raise your voices this month and let people know what life with diabetes is all about.

November 08, 2008

Do You Disclose?

Do you tell people about your diabetes? How do you handle disclosure when it comes to employers, casual acquaintances, friends, and romantic relationships? Are you the type to slide it in there - "Hi, I'm Kerri. I'm recently married and I work in health media. I have a couple of cats and... hey, what's that over there? Ihavediabetes. Anyway, I also love Italian food." - or do you have in-depth conversations with people about your disease?

Disclosure is one of those tricky parts of diabetes management that doctors and certified diabetes educators don't often bring up, and it's this month's SUM Musings column over at diaTribe.  Check it out, if you have a minute, and enjoy this rainy and chilly fall Saturday!

November 06, 2008

Petal By Petal.

I'm picking my priorities, petal by petal.

I'm choosing to wear this Dexcom and adhere another site to my body.  I'm choosing to have the beeps ring out and scrape against the walls of my office, letting everyone know I'm out of range somehow.  Sometimes the site doesn't bother me, sometimes it itches a little bit.  Depending on where it is resting, either on my arm or on my lower back, I sometimes see it in the mirror and am reminded of what I'm trying to accomplish.

I'm choosing to test my blood sugars and log the results regularly these days, even though keeping a log book goes against what appears to be my internal wiring.  I've always been challenged by keeping track of blood sugar numbers, even though just looking at a few days' worth of numbers really does help me isolate patterns.  I'm building a binder, and it's a pain in the arse, but I'm hopeful that tighter numbers will be the result.

I'm choosing to laugh at the things that hurt me.  When the infusion set hits a nerve as it goes in or when my CGM site bangs against the doorjam, I try to embrace my inner Yosemite Sam instead of letting the pain get to me.  Making this choice makes me hop around like a rabid bunny sometimes, and eventually gets me giggling, but it's better than feeling angry.

I'm choosing to go to the gym after work every weeknight.  I do not like the impact this has on my free time, and I don't always like the actual sweating part (oh how I hate to sweat), but I need to keep my heart healthy and my body strong ... and it helps clear my head a little bit, too.  So even though this hour and a half is something I want back at times, I know this choice is worth it.

I've chosen to limit my commitments these days, because over-extending myself leads to stress patterns that make my brain melt.  I'm stoked to do NaBloPoMo, but I've ducked out of doing NaNoWriMo this year.  I'm working at dLife and freelancing, but I'm being careful not to plan to be in fourteen different places at once.  I've decided to stay home in CT some weekends instead of making the long drive back to Rhode Island.  Peace of mind goes a very long way for me, and I'm making the choice to stay a bit more stable. 

Life gets busier and busier every time I blink, and I know it's not just me.  Everyone seems to have a side business they're cultivating, or organizations they're volunteering for, or events they're coordinating.  Life is blasting forward at a breakneck pace and we, as members of this community, have that added bonus of diabetes to manage in conjunction with everything else.  I'm trying hard not to get sucked into the stressful chaos of accomplishing everything, and instead giving a go at managing life petal by petal. 

Diabetes management, petal by petal.

October 08, 2008

My Parents.

I saw a mother and her eight year old daughter at the train station this morning.  It was kind of chilly out, so most of the conversations on the platform were visible, with little puffs of cold above the speaker's mouths.  The mom leaned over to her child and touches her finger tip to what looked like a cell phone.  The child drew back her hand and stuck her finger in her mouth.  The mom looked at the machine, furrowed her eyebrow, and  said something to her daughter.  Her daughter reached into her coat, pulled out another machine, then tucked it back into her jacket. 

Untrained eyes wouldn't see this action as anything of note.  Commuters weren't staring.  Everyone was going about their business - a regular Wednesday morning.  But I saw this mother's daily business - keeping her child alive.  I'm watching this from the sidewalk, not able to hear what's being said.  I can only imagine the words, but they sound so familiar.

I read a lot of diabetes blogs (I know - me?!) and some of the blogs written by my fellow diabetics really touch my heart.  Even though we're all working at different jobs, driving different cars, maintaining different values, and living in different families and skins, every last one of us is dealing with the same vulnerability.  We're all trying to pinch hit for our pancreases, and it can be a tough road at times.

Reading the blogs from the parents of children with diabetes ... they touch my heart, too.  But some times they break it.  

I forget that while I'm testing my blood sugar, wearing the pump, and doing my diabetes thing every day, my mother and father are still worrying.  My parents had to step in when I was diagnosed because I was a little kid who has more interest in climbing trees than climbing blood sugars. And I can't imagine what it's like to have a child with diabetes - I've only been a child with diabetes, and now an adult with diabetes.  Sometimes it hurts a bit to prick my finger or do an injection, but I can control and manage that pain.  I can't imagine what it must have been like for my mom to have me crying and hiding behind the dining room curtains while she drew up my shot when I was a kid.  It wasn't like that all the time, but I'd imagine that once was enough to leave a mark on my mother.

They are always our mothers.This mother this morning reminded me of my own mom.  Made me think about the other parents of kids with diabetes, and what they do every day to keep us safe, healthy, and able to be kids.  Just regular kids, even if we have to take a break from playing every now and again to test or shoot or eat.  Some of the blogger moms and dads write about their child's diabetes, and I have to really concentrate to find the bits of diabetes memories from my childhood.  And I prefer it that way - my childhood wasn't "childhood with diabetes" but instead just "childhood."  Our parents, they protect us and keep us safe from feeling scared and unsure.  They absorb those feelings for us and try to make our lives as normal as possible.  And I am so thankful for everything my parents did for me.

The train rumbled to a stop and the mother and daughter climbed on board.  And I went into my office and called my mom.  

October 03, 2008

Approved!!!

I have been approved!!!!!!!

YAY!!!!!!

They're covering my sensors.  I cannot believe it.  And from what I've been told, I'm one of the first on Connecticut's Oxford Health Plans to be approved for CGM use. 

Also from what I've been told, it takes an external appeal to make it happen.  So if you are fighting for CGM coverage, DO NOT GIVE UP.  Keep fighting!  Appeal every denial.  Make sure you don't miss any appeal deadlines!  It seems like insurance companies deny everything at first and only approve once you battle back.  So keep fighting, and do not give up!  (And use exclamation points!  Ahhh!  I'm so excited!!)

The tools to live well with diabetes should not just be for the people who can afford them.  Fight for your right for coverage.

October 02, 2008

A Unified Front.

United by diabetesTmana wrote a post on TuDiabetes today that hit home and hit hard. An excerpt:

"I am concerned that these different outlooks and interests could, rather than unite us in the common cause of improved quality of life and life expectancy for people with diabetes, cause public conflicts that could rob all of our communities of the resources needed to assist diabetics, both within our online communities and outside of them."

I agree with this whole-heartedly.  While I'm an in-house editor at dLife, a member of several online communities like TuDiabetes, Diabetes Daily, a diabetes blogger here at SUM, and an active supporter of organizations like the JDRF, ADA, CWD, and DRI, these things all come second to why I'm doing this in the first place:  I am a person with diabetes, a diabetic, a type 1, pancreatically-challenged ... whatever you want to call me, I have diabetes, first and foremost.

What I care about is improving my life, and our collective lives, as we live with diabetes.  I want to see support communities do just that - SUPPORT.  The very concept of different online groups pitting against one another is ridiculous.  Aren't we all working towards the same common goal?  To live long, healthy, and well-supported lives with diabetes?  To see technological improvements?  To see a cure, maybe in our lifetimes? 

Everyone has different agendas and different goals - I understand that.  But I also understand that diabetes is not a business to me.  It's my life - our lives.  And anything that can improve that life should be supported and encouraged, despite whether or not I'm a member or if I participate in a fundraising walk. 

And while I understand the business aspect of different companies and organizations, I don't like the idea of division.  I don't like the idea that three different places are working their tails off to cure this disease, but not sharing the data.  I am not sure who crosses what communication lines, but I want to know that the JDRF, DRI, and other research hubs are sharing their theories on curing this disease.  That is happening, right?  We're all working together to cure this, right?  There are so many different diabetes organizations, but where is our unified front? 

In her post, tmana said that she didn't want different communities to assimilate in efforts to "merely to present a united front to the high-priced resources and partners," and I agree with that completely.  This disease is unique to each diabetic and their loved ones, and the various communities and organizations reflect that.  But I want the diabetes communities to mature and embrace one another instead of ostracizing and battling.  It sounds altruistic, but we're not talking about t-shirts here.  This is about a disease, a serious one, that we live with every day.  And while we rally behind all these different organizations, we need to remember - never, ever forget this - that we are really rallying behind one another as a community of diabetics, regardless of whose newsletter we receive or whose network we have a username in.

The "industry" of diabetes continues to grow, especially as more and more people are diagnosed every day.  But we can't lose sight of the most important aspect of these communities and organizations:  Support.   And I value the support I get from you guys here on the blog, outside in your blogs, in-person at dinners and events, and all over the internet and the Real World as a whole.

We are all living with diabetes.  Standing together does far more than walking alone. 

September 25, 2008

When At First You Aren't Approved - Appeal, Appeal, Appeal.

There's a lot of buzz in the blogosphere today about insurance denials and appeals, starting with an article in the Wall Street Journal about "Pushing Back When Insurers Deny Coverage For Treatment."  Scott Strumello brought this article to my attention this morning via his comprehensive blog post about it, and Bernard sent me there again with his perspective.  And after reading everyone's take, in addition to having experienced three denials for CGM coverage from my insurance company (Oxford Health), I realize that I have gone at this problem the wrong way.

Insurance companies don't care about my future baby.  They don't care about my A1c.  Unfortunately, insurance companies are watching dollars and cents, not good sense.  A passionate letter from a patient doesn't even come close to moving an insurance company to provide coverage or overturn an appeal.  They seem to respond to "the facts" only, and I should have attacked them with facts to begin with.  Instead, I took the personal approach, which left me denied three times.  And it's partially my fault because I expect them to care, even when I know they won't.  My approach was arrogant, thinking they'd respond to actual emotion.

But this time?  No emotion at all.  This appeal was just the facts, ma'am.

I sent the Connecticut Department of Insurance a packet of information this morning, in hopes of having my Dexcom CGM system denial overturned.   I included the following:

  • Request for External Appeal form (my insurance information, healthcare provider information, detailed description of disagreement with healthcare plan)
  • The denial letter from Oxford Health Plans, stating that their decision is final
  • Proof that the service in question is a covered benefit (this was in the form of my insurance policy benefit handbook)
  • Executed medical release form
  • Photocopy of my insurance card
  • Documentation supporting my appeal, including a letter from me, my endocrinologist, and Dexcom
  • Oh, and a check for $25.  They specify that this is non-refundable. 
Insurance appeal packet - heavy.

Under the guidance of the Region Managed Care Director at Dexcom, the supporting documentation I included was very factual and devoid of almost any emotion.  My personal letter, which was written with the help of the Dexcom rep and is so stoic and so dry that it doesn't even sound close to anything I would say is supposedly an example of what "will work."  The letter from my endocrinologist cited my elevated A1c, the ADA A1c standard for pregnancy, the Factor V issue, 22 years of IDDM, and various complications I've experienced (including the cotton wool spot, high blood pressure, etc).

Dexcom also provided a packet, which included the recent NEJM study results and other studies supporting the use of CGM technology to better control diabetes.  The letter from my Dexcom rep included a demonstration of the proven benefits of CGM technology on health outcomes, and also outlined the appeal-denied-appeal-denied cycle that I've been in for the last few months.

So it's in the FedEx box now and waiting to be sent off to the Connecticut Department of Insurance.  Each item is tabbed and in the order requested by the appeal form.  It's on time, comprehensive, and fact-filled.  I hope this appeal gets my CGM approved.

The only frustrating part of this process was that I couldn't really lash out.  I couldn't tell these insurance companies what I was really thinking, which was along the lines of "WHAT THE FUCK IS WRONG WITH YOU?  CAN'T YOU SEE THAT THIS TECHNOLOGY WORKS AND I WANT A HEALTHY PREGNANCY AND WHO ARE YOU TO TELL ME I'M NOT APPROVED?!!"  (Ahem.  Sorry.)  It's infuriating to play by their rules, but I'll do whatever it takes to obtain approval.  It makes me absolutely crazy that this technology exists and it has worked for me and it's still not covered.  Don't insurance companies want people to remain healthy?  Isn't there a cost-benefit to them for acting proactively instead of reactively? What is wrong with this healthcare system?!

I'll wait patiently.  I'll hope that this fact-driven approach gets me somewhere.  And I'm very thankful for the assistance and support I've received from Dexcom, dLife, and my friends and family.

But I had to get my digs in somewhere - the memo line of the check is "ridiculous fee for appeal."  Jerkface insurance company.  They're messing with the wrong girl.

(I hope.) 

September 23, 2008

Irony.

I cooked last night.  (Contain your shock, please.)  I made chicken and vegetable soup, whipped up some delicious sugar-free pudding, and baked a chocolate cake for my co-worker's birthday.  Nothing caught on fire, nothing turned to sawdust, and consuming aforementioned tasties did not kill anyone.

Damn you, chocolate cake!

However, the cake baking was a little bit of a thorn in my side, because I was soooo tempted to lick the mixer beaters (no, not while they were spinning) and to stick my finger in that thick, chocolate frosting.   

But HA!  I did not succumb to temptation!  I baked that cake, frosted it, and put it in the fridge, all without even a taste.  HA HA!!!  Take that, diabetes! 

After the cake was all done, I sat down on the floor with my laptop to go through my emails.  But the screen was too bright.  The colors were all ... off.  And my hearing was fading in and out, like someone was shaking a blanket out to spread over the bed.  My head was in a complete fog, and Abby was weaving between my elbows, meowing frantically.

So I tested.  

And after all that baking, after avoiding that delicious treat and trying to "stick to the plan" and "be a good little diabetic," I saw "35 mg/dl" winking back at me from my meter.  Eight gulps of juice later, I was laying on the living room floor, telling Chris, "I didn't feel that one coming at all," and "If I lay still enough, I sort of feel like I'm on a record player, spinning."

Damn you, irony!

September 22, 2008

Diabetes ... Period.

Diabetes and birth control ... WTF?About once a month, there's a certain spike to blood sugar patterns that is both predictable and completely chaotic - welcome to this morning's TMI post about diabetes and the menstrual cycle. 

Two months ago, when the gene for the Factor V Leiden mutation was detected in my blood, my endocrinologist and my gynecologist decided to remove me from my birth control pill and switch me to something with less of a clotting risk.  Since I decided to go on the pill when I was a freshman in college, I have always been on the standard estrogen/progesterone pill (I was on the ortho-tricyclen, then tri-sprintec, if you want a good ol' dose of TMI).  When it came to diabetes and this kind of pill, there was plenty of information out there, so I had a good idea of what to expect.

But this new one?  The progesterone only?  It's a bit of a wildcard.  I'm currently taking the Errin pill (28 days of hormones, no "placebo" pills) and these first two months have been pretty damn tricky.  I'm not sure if it's my age, the ticking of my biological clock, or just the changes in my body as I age, but this pill made my emotions run wildly.   And the information I've received on this pill has varied.  The internet (oh Internet!) informs me that the brand name version of this pill comes with a diabetes-specific warning:  "Diabetes patients - Ortho Micronor may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine."

Oh for crying out loud ... another variable?  

I was on the old pill for almost ten years, in total, and I was used to the effects it had on my body.  I was accustomed to the 28 day cycle, the guaranteed four day period, and the pre-period spikes weren't dramatic.  I actually noticed a drop in my insulin needs while I was on the placebo week, and I had a decade to really adjust to the whole process.  This new bit, with a whole new hormone regimen, has thrown my body into the spin cycle.  I can't anticipate the highs because I'm not sure if/when the actual period is coming.  (Part of the trick with progesterone-only pills is that you may not always have a period, which makes my brain melt.) 

Aside from these unpredictable start times, this seems to be the first pill that affects my emotional state closer to the end of the 28 day cycle ... for example, I came across this video of a singing little six year old and promptly burst into tears.  I had a few days of feeling amped up, over-emotional, and anxious, and these emotions had their own little tea party with my blood sugars.

I want stability.  My whole reason for being on birth control at this point is to protect my body from pregnancy, because my A1C is spikey.  So I take the pill to protect body-from-baby/baby-from-body, yet the pill itself could be contributing to an elevated A1C.  It's frustrating because pill options are limited (thank you, Factor V), pregnancy is not encouraged at this A1C, and I'm a young, newly-wedded woman with a healthy libido.  (Kerri!  Your mother reads this blog!  And so does HIS mother!  Ahhhhhh!  Go delete that!  I'll wait.)

Nope.  Can't delete it.  This is real life with diabetes, awkward bits and all.  Anyone out there on a mini-pill and seeing some numbers (and emotional) fluctuations?  I'm trying to learn everything and anything I can, with the end goal being Nice Healthy Baby Range.  Talk to me - I need some advice!

September 16, 2008

Twenty Nine.

"Are you ..."The bond of diabetes between strangers.

"Yes.  Hi!  Are you ..."

"I am!"

When people who have never met before, yet know one another from the blogosphere, suddenly collide in person, it's always a fun mix of awkward, comfortable, and excited.  And last night I had the wonderful opportunity to have dinner with Karen from Bitter-Sweet Diabetes, R (who I have met several times before), and a woman I will call MW (for "MathWhiz" because she is good with numbers and I am absolutely not).

I've mentioned it before, but the diabetes connection is an instant and easy discussion, helping people who otherwise may have nothing in common to talk freely and comfortably about something that is a huge part of their lives.  Karen, R, MW, and I had trouble ordering our dinner because we were so busy chatting that we barely cracked open the menus.

What was really interesting to me was that MW was 29 years old, like me.  But unlike me, she was diagnosed 6 months ago.  I couldn't stop thinking about that.  R and Karen, also diagnosed as children, have spent most of their lives living with diabetes and for the three of us, life has always included diabetes management.  For MW, diabetes and all its bits and pieces were new to her life.  Life before diabetes for me is something I can barely remember, and it was all I could to do keep myself from quizzing her:  "How do you feel now that you have diabetes?  Do you feel like everything is different?  Do you feel like your life is completely restructured?  Do you remember sometimes that you didn't always have to do this stuff?"  I had to exercise restraint and keep myself from asking all the questions that were floating around in my head.

Diagnosed as a kid, this is just the way things have always been.  Soccer games always started with a glucose check, bedtime always involves a glass of water and a bottle of juice, and now, each skirt hopefully comes with a small, conveniently placed pocket.  For people who were diagnosed as adults, I can't imagine how their lives have changed.  Some people will say that being diagnosed as a kid is easier because you grow up with this disease and it becomes your "normal" without much effort.  Others say that an adult diagnosis is easier because you have decades without the disease, thus maybe lowering changes of complications.  From my perspective, I can't even wrap my head around an adult diagnosis.  I only know what I know.  But I am always eager to learn from others.

We sat at dinner long past when the chairs were put up at the other tables and past when the waitstaff was sitting, watching the football game at the bar.  We compared pumps, weighed out the pros and cons of different CGM systems, and when a quiet beep sounded, we all looked quizzically to see which one of us had "gone off."  The diabetes bond was enough to bring us to the table, but it was the company of kind people and easy conversation that kept us there.

September 15, 2008

The Temptation of Cookies.

But are they bolus-worthy?!"I'll just stand here and keep you company."  He crossed his arms over his chest and kept his eyes on the red bowl I was stirring.

"Chris, you aren't keeping me company.  You're lurking."  The butter and the sugar were starting to mix up in the bowl, giving off that sweet aroma of cookies-to-be.

He smiled.  

"I love cookie dough!"

I'm not much of a cook, but I can definitely bake.  Flourless chocolate cake.  Banana bread that's made with extra bananas so it's all moist and decadent.  I can make chocolate crinkle cookies and Hershey kiss cookies, chocolate chip with oatmeal, peanut butter cookies ... you name it.  And last night, at the begging of my husband, I made chocolate chip cookies with extra chocolate chips.

It's almost Murphy's Law, my cooking talents unable to be used for "good."  I can't cook up a turkey dinner, or make a delicious dinner, but I can create the most sinful desserts without effort.  And the irony of standing there with my insulin pump clipped to my hip as I mixed up a bowl of brown sugar, chocolate chips, white flour, and butter was enough to make me laugh.

I've become decent with the willpower bit, able to say "no thanks" to indulgences if I have my head on straight, but sometimes I completely buckle and make stupid decisions.  I caved to the temptation of cookies last night.  They were fresh from the oven and sitting on the cooling rack, making the whole house smell ... simply: awesome. 

And Chris and I settled in to watch Vantage Point (mini-review: decent enough of a movie, but I could have done with the rewind device every fifteen minutes or so), I grabbed three cookies for Chris.  And then I grabbed three for myself.  My willpower went pfffft.  And the cookies tasted delicious.

Indulgences, for me, make me fear the highs.  I'm not as concerned with the calories or the effects on my weight (maybe I should be), but I try and ward off any post-indulgence highs anyway that I can.  Usually, I bolus aggressively, and sometimes hit the mark perfectly.  Other times I end up chasing a low, making the indulgence go from "reasonable" to downright gluttonous.   Last night I managed to do both.  Those three (delicious) cookies sent me up to 204 mg/dl, then I hit 54 mg/dl about an hour later.  

But was it worth it?  

I hadn't had cookies fresh from the oven in years.  Can't even remember the last time.  And these cookies were moist, hot, freshly baked, delicious, just the right amount of chocolate chips, and delicious.  So yeah, I'd say that little blip in my willpower radar was okay.  One cookie won't kill me.  Neither will three.

But Chris, eating spoonful after spoonful of raw cookie dough?  I think that may be more of a problem.  ;) 

September 11, 2008

Fudgy the Whale.

I forget sometimes that Chris reads my blog.  But he does, and he takes care of me.  Today, we celebrated 22 healthy years with type 1 diabetes with this: 

  And it was awesome.  Thanks for being there, you guys.  I really appreciate it.

Diabetes Anniversary No. 22.

I was diagnosed with diabetes twenty-two years ago today.  I don't have anything to say other than it's another year and I don't have that feeling of "accomplishment." 

Instead, I feel a little beaten down by a rotten A1c, my body is sore from my attempts at rotating infusion sites (the one I put in last night was risky - very high on my back and it hurts like a bitch but the absorption is good so far), and I'm trying really hard to control my blood sugars. 

There are days when I feel great and like I'm almost unaffected by this.  Other days are tough, and it gets inside my heart.  My blood sugar right now is 99 mg/dl.  I feel strong and I look healthy, I think.  I feel like people don't understand what this disease requires sometimes because it's so "invisible." But I don't feel like marking this day.  I don't want to acknowledge it.  I don't remember "before" and I try really hard sometimes, forcing my mind to go back so many years and I comb for a memory that was before my diagnosis.  I can't find a single one.  And I think forward to my future and about starting a family and going on trips and all the life I have ahead of me and I comb through this future for some hope that these moments won't include diabetes, either.  But they all will, for as far out as I can see.

I know we have to keep working towards good health - all of us.  And I'll continue to do that.  But it can get very tiring, and today I'm not feeling very upbeat.  I may need to get this.  Just thinking about it makes me laugh.  And laughter, diabetic or not, helps heal everything.

September 09, 2008

Lunch Hour Education.

Not in the mood to educateDuring my lunch break yesterday, I dropped by the local Ann Taylor store to poke around in their sale rack.  An older woman, maybe about 55 years old, approached me and asked if I needed a dressing room started.

"No, I'm all set, thanks.  I'm on lunch, so this is just a quick visit."  

"Oh!  You work in the area?  I've seen you in here before."

"Yes, I work at dLife."

She pursed her lips.  "dLife?  What's that?"

"It's a diabetes media company.  We have a website?  And a show on CNBC about diabetes management."  I ran my fingertips down the seam of a black dressy top that I loved.

"Diabetes.  Oh, the sugar!  I have that.  I have diabetes and my doctor told me to try and lose weight."

"That's good!  You're taking the right steps."  I moved away a little bit, perusing another sale rack.  She followed me.

"You know, I see all these fat little kids at the high school when I drop my daughter off.  I see them and I can't help but think that they are all going to get diabetes.  Like me.  They'll end up taking shots and losing their eyesight, you know.  Diabetes is a very serious disease."

I smiled at her.  "Diabetes is a very serious disease.  But diabetes isn't always caused by being overweight.  There are different types of diabetes."

"I know.  The kind I have?  It's because of being overweight.  My ex-husband told me that."  She adjusted her glasses.  "But I want to lose the weight so I don't end up taking shots.  Did you know that some people have to wear a machine all day long that gives them their shot?  My goodness.  Those people must be sick as can be.  No ma'am, I don't want that to be me.  I take my pills.  I'm not going to end up like those people."

I was on my lunch break.  I didn't want to get into a big diabetes discussion while I was shopping.  But I couldn't let this lady ramble on, thinking diabetes was her fault and also thinking that pump wearers are on their death bed.

"Well, diabetes isn't your fault.  It's a disease, not a guilt trip.  But it's good that you're taking your pills and trying to lose weight.  That's a step in the right direction.  I also have diabetes - type 1 - and I wear one of those machines that gives me insulin all day long."  I smiled again, trying to show her that I wasn't dying.

"Oh my.  How long do you have?"

"Excuse me?"

"How many years?"

(Is she seriously asking me this?) 

"Left?  Ma'am, I'm not dying.  This machine doesn't mean I'm dying.  It's just another method of insulin delivery.  So instead of shots, I wear this pump.  It's okay.  I'm in good health.  I've been diabetic almost 22 years.  It's complicated, but it's not my fault.  Diabetes brings enough to the table - we don't need guilt, too."

"Well, I don't want to wear that thing."  She gestured quickly towards my pocket, where my pump was clipped.  "I'll just keep taking my pills.  I don't want my diabetes turning into what you have.  No offense, sweetie.   You look very healthy, and I never expected you to have it, too.  And I never expected yours to be that bad."  She smiled sweetly, making her remarks sound even more ignorant.

I'm all about educating people and raising awareness.  But sometimes I'm not up for the challenge.  I wanted to buy a pretty shirt, go to the bank, and then go back to work.  I didn't have the patience to be tolerant that afternoon.

"That's great, ma'am.  I wish you and your health all the best.  And just so you know, I don't want to wear this pump, either.  But it keeps me healthy.  And I want to be healthy.  Have a good one."

Turned on my heel.  She was still talking, something about "We're having a sale on suits, did you know that ..."

Lady, if I have just one day left or a million years in my future, I don't want to spend another minute of it talking with you.

Lunch Hour Education.

Not in the mood to educateDuring my lunch break yesterday, I dropped by the local Ann Taylor store to poke around in their sale rack.  An older woman, maybe about 55 years old, approached me and asked if I needed a dressing room started.

"No, I'm all set, thanks.  I'm on lunch, so this is just a quick visit."  

"Oh!  You work in the area?  I've seen you in here before."

"Yes, I work at dLife."

She pursed her lips.  "dLife?  What's that?"

"It's a diabetes media company.  We have a website?  And a show on CNBC about diabetes management."  I ran my fingertips down the seam of a black dressy top that I loved.

"Diabetes.  Oh, the sugar!  I have that.  I have diabetes and my doctor told me to try and lose weight."

"That's good!  You're taking the right steps."  I moved away a little bit, perusing another sale rack.  She followed me.

"You know, I see all these fat little kids at the high school when I drop my daughter off.  I see them and I can't help but think that they are all going to get diabetes.  Like me.  They'll end up taking shots and losing their eyesight, you know.  Diabetes is a very serious disease."

I smiled at her.  "Diabetes is a very serious disease.  But diabetes isn't always caused by being overweight.  There are different types of diabetes."

"I know.  The kind I have?  It's because of being overweight.  My ex-husband told me that."  She adjusted her glasses.  "But I want to lose the weight so I don't end up taking shots.  Did you know that some people have to wear a machine all day long that gives them their shot?  My goodness.  Those people must be sick as can be.  No ma'am, I don't want that to be me.  I take my pills.  I'm not going to end up like those people."

I was on my lunch break.  I didn't want to get into a big diabetes discussion while I was shopping.  But I couldn't let this lady ramble on, thinking diabetes was her fault and also thinking that pump wearers are on their death bed.

"Well, diabetes isn't your fault.  It's a disease, not a guilt trip.  But it's good that you're taking your pills and trying to lose weight.  That's a step in the right direction.  I also have diabetes - type 1 - and I wear one of those machines that gives me insulin all day long."  I smiled again, trying to show her that I wasn't dying.

"Oh my.  How long do you have?"

"Excuse me?"

"How many years?"

(Is she seriously asking me this?) 

"Left?  Ma'am, I'm not dying.  This machine doesn't mean I'm dying.  It's just another method of insulin delivery.  So instead of shots, I wear this pump.  It's okay.  I'm in good health.  I've been diabetic almost 22 years.  It's complicated, but it's not my fault.  Diabetes brings enough to the table - we don't need guilt, too."

"Well, I don't want to wear that thing."  She gestured quickly towards my pocket, where my pump was clipped.  "I'll just keep taking my pills.  I don't want my diabetes turning into what you have.  No offense, sweetie.   You look very healthy, and I never expected you to have it, too.  And I never expected yours to be that bad."  She smiled sweetly, making her remarks sound even more ignorant.

I'm all about educating people and raising awareness.  But sometimes I'm not up for the challenge.  I wanted to buy a pretty shirt, go to the bank, and then go back to work.  I didn't have the patience to be tolerant that afternoon.

"That's great, ma'am.  I wish you and your health all the best.  And just so you know, I don't want to wear this pump, either.  But it keeps me healthy.  And I want to be healthy.  Have a good one."

Turned on my heel.  She was still talking, something about "We're having a sale on suits, did you know that ..."

Lady, if I have just one day left or a million years in my future, I don't want to spend another minute of it talking with you.

September 08, 2008

Code Word - "Shoot Up."

Code word:  Shoot up!We know we have a special language - it's been confirmed in several editions of dTOES - and almost all of us in this community recognize the different terms.

But sometimes, those terms drop from the mouths of our friends, and the sound always amazes me.

Like yesterday morning, I was having a marathon phone conversation with Batman, and she mentioned that she told one of her co-workers about me having diabetes.  "I was like, yeah, Kerri is a type 1 and she wears an insulin pump ..." and she kept talking but the phrase "a type 1" stuck in my head.  Batman and I don't talk about diabetes much, but she's one of my closest friends and this language has become part of her vernacular almost by osmosis. 

It's my diabetes and my disease to manage, but my closest friends and family members are so tuned in to it that they don't even notice anymore.  Needles in my purse are par for the course.  Looking at me and casually mentioning, "Ker, your wire is out," happens all the time.  "Whoa, that'll empty out a pump," after seeing a huge dessert delivered to a table.  Smooshed granola bars and stashes of juice boxes have found their way into everyone's glove compartments, and I'm not even sure they realize it.  Numbers like 98 and 112 become amusing - "Hey, that's like a perfect blood sugar!" - and people's mentions of "juvenile diabetes" are quickly corrected as "Yeah, they used to call it that but now it's type 1 diabetes." 

"Oh my gosh, that looks delicious  You think like 40 grams of carbs?"
"Dude, let's go in the water.  Throw your pump in the cooler!"
"We've got everything we need for the hike:  water bottle, sunscreen, and sunscreen." 

They "get it," but the best part is that they don't realize how much they've "gotten it."  Their level of understanding is so intrinsic and instinctive that they barely notice. 

I rely on these people so much.   My meter gives me blood sugar results and my pump delivers life-sustaining insulin, but my emotional health is nurtured and cared for by my outstanding support team.  It blows my mind to think about how many people are really needed to keep me healthy.  My endocrinolgist and my primary care physician monitior my physiological progress and keep me steeped in information.  My ob/gyn keeps tabs on my reproductive system and helps me prepare my body for baby.  My retinologist watches out for those pesky eye issues.

But there's so much more than just the doctors with initials after their names.  There's my mom and dad remind me that regardless of how old I become, I'm still their daughter and still their worry.  My brother and sister, who know how to support without smothering.  My close friends, who make sure my life is as free as theirs, but just in case, they keep juice at the ready.  And my husband, who loves me in sickness and in health, not letting diabetes define our relationship - or us.

"Oh, the food's here.  Time to shoot up."  

That's a phrase only a diabetic, or a person who cares for a diabetic, would understand.

September 04, 2008

Playpen.

Diabetes is in there, screaming its head off.I go through spurts of paying rapt attention to diabetes-related things.  I'll monitor and log numbers like my next heartbeat depends on it.  I'll count those blasted carbs and bolus accordingly.  My days start to lose their life focus and my hours begin to revolve around diabetes.  For the first part of these obsessive periods, my numbers are tightly controlled.  But after too many days of laser-focus, the burnout sets in and things go haywire.  Over-correcting highs (i.e. Testing at 10 am to see 240, correcting with two units of Humalog, testing again at 11 am and seeing 220, correcting again ... you see where this is going, right?  Straight to a blood sugar of 52 mg/dl at high noon.), chasing lows, feeling vlah.

Then there are the spurts when I do not give what even remotely resembles a care.  It's not like I'm blowing off diabetes care, but I just do it without overthinking it and then move the heck on.  This is the phase I'm in these days, and it's been going on for about two weeks.  I'm wearing my pump, checking my blood sugar, eating 85% healthy (too much coffee, indulging in ice cream, and upping the carb intake a little bit more than  usual), and exercising very regularly.  But I'm not going crazy trying to control all the variables.

Why, oh why, Diabetes, do you behave yourself only after I've gone through all your emotional hoops?  Why don't you comply when I'm diligently logging and checking out all the hardware issues?  When I'm pouring my heart into your management?  Why is it that you are completely in line when I'm climbing up the side of a mountain, not giving a crap what my blood sugar is?  Why is it that once I stop fussing, you start behaving?  I'm not going out of my way to attend its needs, and now is when it complies.

Diabetes is like a bad little toddler.  It's grumpy and needy and pinches my arm when I walk by.  It's moody and constantly needs to be changed.  It wants to play in the dirt but it doesn't want to wipe its feet before it comes inside, and it leaves crumbs from its snacks all over the damn place.  It whines, cries, and hollers in my ears but when I give it what it wants, it throws it against the wall with a smack

I will be a good mother to my actual children, but I'm going to toss Diabetes back into the playpen for a few more hours and let it scream its head off.

August 27, 2008

You Gotta Fight ... For Your Site.

I am pretty crap with site rotations.  This is a fact, evidenced by the same pad of callous on my fingertips from testing and the smudge of dots on my thighs from infusion sets.  Back when I was taking injections, I favored my arms for a few years, then my stomach, then my legs, building up layers of scartissue and absorption issues with every prick.

I know site rotation is important, but it's never been my strong point.  Until I'm forced to do it.  Change is something I'm reluctant to make sometimes, especially when it comes to managing pain.  I have to be honest - most of the time I prefer using the same site locations because they sting less.  I test on the tips of my fingers because those nerves aren't as responsive and the lancet doesn't sting, for the most part.  Same for my thighs - the infusion sets don't sting as much when they are nested in an already-broken in area.  

But those wild highs forced me to change my stubborn ways.  (Yes, wicked stubborn.  Ask Chris.  Or my mom.  Or ... anyone, I guess.)  And now, after over two weeks of using expanded body real estate, my numbers are faring a bit better.  I'm seeing much better absorption using lower back sites and even though the infusion sets sting like hell for a few minutes after going in, my postprandials are more in range.  I feel like a bit of a stooge for being so stubborn and letting a little sting or a smidge of fear keep me from taking control of this crap. 

This has nothing to do with being stubborn, but I liked the photo.

Ruts - I get in them.  I'll do the same thing, every day, expecting something to change.  And I get all moody when it doesn't.  I frustrate myself because I let complacency or comfort or sometimes fear keep me from making even the tiniest of changes.  I'm now accustomed to having my infusion set on my lower back and I feel comfortable using it.  And my body seems to be enjoying the change, too, because my thighs are starting to heal up and the speckled red dots of old sets are disappearing (helped along by some high octane moisturizers, exfoliation, and some good old fashioned neosporin). 

It's not all awesome, though.  With this new site location on my lower back, the tubing is a bit more exposed and I've found myself forgetting to tuck it back into the waist of my skirt.  It's also less-than-cozy on the first site night, because I sleep on my back and I can feel the infusion set.  But these discomforts are worth it when I'm seeing my blood sugar at 147 mg/dl an hour and a half after lunch.  I'll freaking take that. 

Stubborn Kerri ... she needs to shake things up now and again!  (Only in first person, not in third person.  Third person is not as effective.)

August 25, 2008

Just Say No.

Holy delicious.Saturday afternoon, we were at Diane's birthday party (Happy Birthday, Chris's mom!), and there was a decadent chocolate cake to celebrate.  Sunday played host to my friend Kate's wedding shower, where there was an open bar, cookies, and a delicious butter cream cake.  Yet I didn't taste any of these items.

And I have no clue where this willpower came from.

After a startlingly high A1c result last month and a string of elevated blood sugars, I feel like I'm starting to get things back under control these days.  I'm giving my thighs a rest and trying out new infusion set sites, and the absorption has undoubtedly improved.  I'm also doing my best to keep a closer eye on numbers and be a bit more proactive instead of reactive with corrections (i.e. counting carbs more precisely and giving my insulin time to get in before eating in efforts to avoid a spike), which seems to be working.  My meter average has gone from 160 mg/dl two weeks ago to 143 mg/dl - and I'll take it.

Granted, I'm not all good behavior.  I had an awesome peach martini on Saturday night with my husband.  And I have been indulging in too much tasty iced coffee on those long drives home to Rhode Island. Some stuff is bolus-worthy!  But with such a focus on diabetes management, I'm becoming stingier with indulgences.  I wanted to taste that chocolate cake, but the fabulous smell of chocolate was wiped out by the thought of a big bolus, the potential for a post-prandial spike, and then the low that may result from the correction.  My blood sugar at the time was 89 mg/dl, and I wanted to keep the steady number more than the cake.  Same for the wedding shower treats - it was easier to say no than to handle the potential highs and lows.  (Even though the cookies at the shower looked so exquisite I almost buckled.)  But I keep thinking about a baby someday.  And a lower A1c.  And feeling better.  It made it easier to just say no.

While I was at the shower, my friend's mother (a type 2) remarked while the cookies were being passed around, "You have such great willpower!" 

I laughed.  "Today.  Who knows what tomorrow will bring!" 

Diabetes has become like chess - I'm looking a few moves ahead and basing my decisions on the future rather than the present.  I don't plan on letting diabetes checkmate me ... instead, I'll steal its horse and run off.  For now, I hope I can make the willpower last!

August 14, 2008

CGM Denial - Yes, Another One.

Battling for CGM coverage.Dear Liana Masone, Grievance Associate at Oxford Health,

What can I do to help you understand why my request for a continuous glucose monitor should be approved?   I've received your third and final letter, and according to your team:

"We have thoroughly considered all of the available information submitted in support of your appeal.  Based upon review of that information and the terms of your plan, a medical director with a specialty in General Surgery, continues to uphold the denial of coverage for the Dexcom sensors.  This type of continuous glucose monitoring has not been shown to provide superior health outcomes.  Therefore, an Oxford medical diretor has determined that coverage for the Dexcom sensors is Not Medically Necessary, as the term is defined in your Certificate of Coverage."

You know what's great?  The part of your website that talks about the 2008 Healthy Bonus Offers, claiming the following:  "We recognize there are ways we can help members reduce out-of-pocket health are costs.  We believe in the power of prevention: that is  by taking a little extra time to eat better, exercise and reduce stress, individuals can do a better job of staying on the path of wellness."

Is that so?  By seeking approval for the Dexcom continuous glucose monitoring device, I am trying to stop as many of the fluctuations in my blood sugar control as I can.  I am also trying to safeguard my body against hypoglycemic unawareness, because my body does not recognize the symptoms of low blood sugar with any reliability.  I am also preparing for pregnancy and making these CGM efforts for my baby and my husband.  Proactive approach, no?  You would do well to be more proactive in preventing complications, instead of being reactive and paying for them later.

According to the paperwork you sent me, I have been advised that I have exhausted my internal appeals and may now file an external appeal for CGM coverage.  You have also told me that I need to enclose a check in the amount of $25.00 made out to the Treasurer, State of Connecticut.  This check is the first item on your appeal application checklist, showing me how committed you are to making this appeal process as difficult as possible.  

I have been a type 1 diabetic for almost 22 years.  The paramedics have visited my home due to morning hypoglycemia.  My A1c is currently above 7.5% and not within the range for pre-conception, as advised by my endocrinologist at Joslin.  I do not want to experience diabetes-related complications, and I am trying to stay as healthy as I can. I will continue to fight for approval of a CGM.

In the next week, your team will receive a letter from my endocrinologist, stating her recommendation for CGM coverage.  You will also receive my current blood work results, a copy of my certificate of coverage, and yes, my check for $25.00.

I look forward to your response.  

Best,

Kerri Morrone Sparling

August 08, 2008

My Glucose Meter Talks To Me.

I spoke with my meter about whether or not he's comfortable talking on camera.  After some cajoling, Meter decided he was ready for his close-up.  He wasn't happy about the nose, and he was a little frustrated that cars kept driving by as we were taping, but overall he was pleased to share his perspectives with the diabetes community.

My Glucose Meter Talks To Me.

Coffee?  Yes, it's making me do strange things.  Why do you ask?

July 28, 2008

CWD: My First Time.

My diabetes greeting card.Up until last week, I had never been to a CWD event before.  I had heard about them through the diabetes community, and I knew that many of the parents who were reading my blog were members of the CWD forums.

Now I know why people are so into CWD.  It's like coming home.

These people get it.  I've said that before about my best friends, who do their best to understand the subtleties of diabetes, and about my wonderful co-workers, who go to great lengths to know what a real "dLife" might be like. But the parents and children at the CWD conference are the ones on the front line, the folks who are living with this disease every single day, either as the diabetic themself or the caregiver of a PWD.

The CWD Friends for Life conference in Orlando is filled with parents who care.  With kids who boop beep boop and shunk and who know the carb content in their favorite breakfast cereal.  With grandparents who can proudly program a pump, or siblings who know how to treat their brother or sister's low blood sugar.

It's also filled with some of the diabetes medical community's finest, with Fran Kaufman, Bruce  Buckingham, Richard Rubin, and Barbara Anderson among the faculty.  I attended several focus groups about diabetes and pre-pregnancy planning, CGM use, and the artificial pancreas.  (The groups deserve their own posts, so more on those later in the week.)  I also had a chance to meet with some of d-blogging's most friendly faces, like Manny from TuDiabetes and Sara from Moments of Wonderful

The first focus group I attended was about Diabetes and the Web, which has people talking about websites they frequent for their diabetes care.  A little girl sitting in front of me, about 8 years old and with an insulin pump clipped to her shorts, said "I visit dLife to find recipes I can eat."  My heart swelled with pride. 

They asked us to envision cards we'd receive from our endocrinologists or CDEs.  "What kind of card would you want to receive from your doctor?"  Even though the group was dominated by children, there were several adults (myself and Manny included) who grabbed for the crayons with vigor.  

The front of my card read:  "Do you have diabetes?"

Inside:  "You are still YOU."

After sharing our cards with the group, the leader asked when we'd want to receive these cards.  On our diagnosis anniversary?  After we have an A1c done?  When we're feeling frustrated?

"I'd take these cards anytime.  Randomly, monthly ... daily."  I said. 

A father in the group laughed.  "Me, too." 

I've said it before and I'm sticking with it:  Diabetes doesn't define me, but it helps explain me.  And attending this conference drove that point home.  I was one of many, united by a common medical bond, but I was still me.  A pump in my pocket, a meter in my bag, and two decades of diabetes under my belt - but I was still me.  And I wasn't alone.

Thanks for the warm welcome, CWD. 

(I have a Flickr set of the conference online now - feel free to poke through if you have time.  More on the conference to come!)

SUM Tags: , , , , ,

July 21, 2008

Blue Bird of Happiness.

We drive.  Friday night, after taking in the new Batman movie, we hopped in the car late at night and drove home to RI.  (Late-night driving means less sleep but also means less traffic, and we'll take the latter, thanks.)  Saturday morning had me at the beach with a few of my college roommates, then dinner out with family on Saturday night, then breakfast with Batman (my friend, not Christian Bale), then a cookout at my mother's house on Sunday afternoon.

It sounds like a lot of driving because it IS a lot.  Chris and I try to connect with as many of our friends and family as possible when we come home on the weekends because we don't have the opportunity to see them for several weeks on end.  Connecticut, though filled with career opportunities for us both, doesn't have much in the way of family.  And lately, family and friends are something I've been missing tremendously.

I've hit a very rough patch, diabetes-management wise.  My A1c came back the highest it's been in five and a half years, and I didn't take the increase with any grace at all.  Even though I can attribute the rise to wedding chaos and honeymoon laziness, I still felt so disappointed.  In addition to an elevated A1c, I've also been diagnosed with a disorder called Factor V Leiden, which can cause blood clots and has forced me to change some of my routine (read: birth control pills are now a no-no).  Despite the fact that this disorder is unlikely to cause problems, it's still a new blip on my health radar and contributed to my feeling of "eh" last week.  I was feeling overwhelmed with health concerns, frustrated with insurance issues for the Dexcom, and pretty damn grumpy.  Crumbs Morrone ... er, Sparling.  Crumbs Sparling.

I needed some time with friends and family this weekend, to help take the edge off a roughish week.  And it worked.  Yesterday afternoon, I was hanging out in my mother's yard, taking pictures of her garden.  My mom is very whimsical and a little silly, and her yard is crammed with flowers and these strange little garden critters that she finds from the Christmas Tree Shop:  small ceramic ducks, little turtles, and garden gnomes.  It sounds like her lawn is littered with trash, but these creatures aren't just flung about haphazardly.  They're carefully placed, hidden between hydrangea bushes and underneath rhododendrons.  You have to look for them to find them.

Bluebird of Good Health 

I came across a big, fat, ceramic bluebird yesterday.  It was in her front lawn and guarding an azalea bush.  

"Bluebird of happiness!"  My mother came by, checking out what I was photographing.

"I see that."

"Well?  Doesn't it make you happy?"

I thought for a minute.  I felt revitalized after being socially reconnected with my friend and family.  I felt ready to make the medical changes necessary to accommodate the new condition and to take change of my diabetes management once more.  I felt loved.  Supported.  Happy.

"It does, Mom.  That fat bird totally makes me happy."  She grinned at me. 

Onward, right?  All I can do is get over the bad news and move forward towards something better.  Good health is one day at a time.

July 16, 2008

Body Image.

What fits.Beauty benchmarks seem to be measured in what size pants you fit into and what designer hand bag you have draped over your rail-thin arm. 

This is the biggest bunch of crap I have ever heard.  In my life.

There's a lot of body image problems in our society.  Women are shown almost-unattainable media images and are encouraged - expected? - to achieve that look.  As a girl with diabetes and part of a family of curvier people, whittling my body down to that socially mandated size isn't easy ... and wasn't accomplished.  Life with diabetes puts a huge emphasis on food, making me unable to eat just a raisin for lunch.  Instead, I ate in accordance with the then-peaking of my insulin and tried to keep my weight, and my diabetes, under control.  This was difficult at times.

I was never a "thin" adult.  I've always had more of an athletic build than that of a runway model.  As a kid, I was scrawny, but once puberty hit, my body took on womanly curves and held fast to them.  I never felt shapely or feminine - instead, I felt fat. In college, I lived with six other girls (six until me?) and they were all teeny little things.  They had thin arms and thin legs and they shared clothes with one another, but I couldn't get in on that scene because I was about two sizes bigger than all of them.  If they were wearing size 4 pants, I was in an 8.  I always felt a bit bigger, a bit more awkward, and very shy about my body. Despite whether or not I looked as overweight as I felt, my mind was entrenched in thoughts that were self-conscious.  I was very unfair to myself, just like many other women are.  It sucks to feel bad about yourself.

Diabetes challenges my health, but it sometimes offers up a healthy perspective.  It took me several years to really come to terms with the fact that my body needs to have different priorities.  Going to the gym has become less about slimming down my stomach and more about improving my cardiovascular health, lowering my A1C, and reducing body fat so that I can make better use of my injected insulin.  It couldn't be about fitting into a smaller dress size because it needed to be about being healthier every day.

I'm not going to be teeny.  I will not be the girl who appears to be challenged by every breeze that blows through.  My body will be strong and curvy and ornamented by various medical devices, like a diabetic Christmas tree.  It's taken me a long time to achieve a level of confidence in how I look and how I feel about myself.  But I see myself now and realize that I don't look much different than I did in high school or in college.   I just feel different.  I feel like the numbers that matter aren't the ones on the scale or sewn into the tag on my skirt, but instead the ones stored in my meter. 

I feel happy, and that looks better on me than any stitch of clothing I own.

July 11, 2008

A1C You Soon.

Image courtesy of the BloodBankOnWebThe paperwork has been on my desk, but I kept staring at it for a long time.  And by "long time," I mean three full months.  I kept finding reasons to put it off - my wedding was coming, I was busy at work, my shirt sleeves were too long - but the real reason was because I knew the number would be kind of crap.  A1Cs are never fun, and they serve as a sort of diabetes report card.  With my stress levels being a little out of control during the wedding ramp-up, my numbers followed suit.  And I didn't want to know what my A1C was, out of fear and stubbornness. 

But on Tuesday, I turned my brain off for a bit.  I grabbed the paperwork, left my office, and drove directly to the blood work lab.  I refused to psyche myself out (and I tried really hard not to think about the pinchy needle easing into that tender part of my arm ... not a fan). 

"Hi, I'm Kerri.  I need to have an A1C drawn."

"Okay, write your name on the sheet here and have a seat."  

I wrote my name, thus making it official.  I was there, for my A1C, and there was no turning back.

I'm not sure why I shy away from this test so much.  I think it's because I have spent over twenty years putting so much of my self-worth into this percentage.  When it comes back under 7%, I feel like these moments of diabetes difficulty are worth the effort.  I feel strong and confident, like I'm really making strides in achieving good health.

But the bummer numbers.  The ones that are over 7% and cause the endocrinologist to check the "uncontrolled type 1 diabetes" box.  My Internal Motivational Speaker screams in protest at this box checking.  "Hey!  Uncontrolled?  Dude, she's paying attention and really putting forth a huge effort to manage this disease!"  I get overwhelmed by the possibility of complications and maybe not having a healthy pregnancy.  The parts of this disease that I try not to think about, try not to focus on, creep into my thoughts and whisper in my ear.

The phlebotomist put the rubber thing around my bicep, asking me to make a fist.  "To bring out your vein," she said, preparing the needle.

"Oooh, I'm not a fan of needles," I admitted.  

"But you take needles all the time, right?  With the diabetes?"  She tapped my arm a few times with her finger.

"Sort of.  I have a pump.  And a CGM," I gestured to the Dexcom sensor on the back of my arm.  "This takes blood sugar results for me so I don't have to prick my finger so much."

"Aye!  The finger prick!  I do not like that so much at all.  I am a diabetic type 2.  The finger pricking makes me all ... " she made a face to let me know how much the finger pricks stung.  "I do not enjoy it."

"Well I don't enjoy having blood taken.  That's why I am nervous."

She laughed at me softly.  "And that's why you are staring at the wall instead of looking at your arm, right?"

"Damn straight."   

Now I wait.  I should have my results in a few days, and I'm really hoping that this A1C result doesn't reflect the weeks of stress and honeymoon and worky bits.  I hope it shows the hours at the gym, the healthy eating, and the constant monitoring.  Either way, knowing this number is important.  Some would say it's half the battle.  But I wouldn't end this post with a silly reference to GI Joe ... would I?

July 03, 2008

Diabetes For The Day.

Working in a diabetes company means understanding the culture and responsibilities of a person with diabetes.  This is easy for me, because I'm a person with diabetes.  But not everyone at work is living with diabetes.  My fellow employees work with diabetes every, but they don't live with it. 

People at work have taken a very active interest in becoming more familiar with the diabetes lifestyle - more than just understanding the "facts" of this disease.  They ask questions about the pump, or different insulins, or what a CGM does.  They ask how things "feel."  One of my co-workers decided to have "diabetes for the day," which included him testing his blood sugar several times and wearing a pump infusion set (minus the cannula - just stuck to his abdomen for "the feel" of it) attached to a makeshift "pump."  He spent the day thinking about carbohydrate intake, blood sugar results, and the constant presence of a device, in efforts to better understand the community he's trying to help.  Here's his feedback:

Kerri:  How did testing your blood sugar affect the way you thought about food?

Co-Worker: 
I'd love to say that I'm a changed person and that I look at the world through different eyes having worn the shoes of someone with diabetes for a day.  Truthfully I think it was the inconvenience pain of testing that caused the greatest hesitation and re-jigging  for me.   The event that caught me most off guard was when I returned home from work and passed up having a cookie before dinner.  My inner dialog went something like,  "Mmm cookies.  Wait, I'd have to test first.  Kerri said I had to test before eating anything.  Hmm.  I'm going to be eating dinner in an hour so I'd probably have to test twice.  BUT.  If I have it with dinner, I can test just once ... I think I'll wait."

I have to say, all those fake sugars [note from Kerri - he's talking about artificial sweeteners] are really yucky and drinking mostly plain water is no fun.   Give me my plain sugar in my coffee.  If I had to inject insulin (saline) I think it might have really changed the way I thought about food because it would have forced me to do more calculations and understand what I was putting into my body (both the food and the insulin).  With just testing, I only had to make simple yes/no decisions.  Maybe next time I'll get wired up for a pump.  Shooting actual syringes saline ... am I getting paid to do this?

Kerri:  Did you ever feel inconvenienced by the presence of the meter or the "pump?"  How so?

CW: 
Having the meter/pump on my belt wasn't too conspicuous as I think it looked a lot like a geeky cell phone belt clip.  (And I'm pretty geeky.)  However, I did almost drop it into the toilet once.  Unlike a cellphone, it's wired/tubed to me which created a bit of a juggling act and not one you're likely to see at the circus.  Thankfully all my years of playing frisbee came in handy and I was able to prevent a very embarrassing accident.  (Since it was just a meter it wouldn't have been too costly.)

I also think that if I wasn't at a place where we talk about diabetes everyday, I might have been a bit more self-conscious.

Kerri:  How did the blood glucose numbers make you feel?  Did you associate any "guilt" to a higher number?  Did any of your results make you raise an eyebrow?

CW:
  Since I knew that my body could "handle" the swings I wasn't too worried and thus not too guilty.  (I had pizza for lunch and pasta for dinner ... and two cookies.  Something that I don't think would be part of a typical menu for someone who was managing their BG.)  I did have some pretty high swings and it did make me realize that keeping your BG within an acceptable range is not a passive act that can be programmed like a thermostat and left on auto-pilot.  There's a constant feedback loop that occurs and I don't think a CGM talking to a pump would be able to easily and reliably handle the delicate balance.  (And that's coming from a programmer.)

Kerri:  Do you feel as though  you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?


CW: 
I think what I experienced is just the tip of the proverbial iceberg.  I was forced to stop and think a few times, but I didn't have to pay the "penalty" of being careless and I knew in the morning it would all be over.  Sort of like playing with tasers without the batteries.  "Don't fake taser me, Bro!" 

I am a bit curious as to what a high and low are like.  Is it similar to being hungover?  Like having a bad flu?  Is it worse than a papercut between the fingers?  (I really hate paper cuts.  How can something so small hurt so much?  I'll inject saline before getting a papercut.)  The insulin pump is still very intriguing to me.  Can you feel the insulin going in?  Can you "feel" your BSL/energy change?

No amount of simulation will ever help me understand what it's like to not be able to just disconnect.  There is no vacation from diabetes.  It doesn't sleep when you sleep.  I can't even imagine that.  Even as I type this, the concept is so foreign to me.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW: 
I've been very fortunate and have been very healthy all my life.  I have my scars and stories, but overall I can't complain.  I don't think the experiment changed how I thought of my own health.  I think I appreciate how amazing the human body is to keep everything working properly, but I don't think I'll change any of my habits as a result of the experiment.  Don't get me wrong.  I'll continue to watch my weight and try to eat healthy food.  (I haven't been to a fast food joint, except to use the bathroom, in over 15 years.)   But it's about my general health and well being, and not specifically as a way to prevent type 2 diabetes.

The experience will stay with me longer than the lancet marks on my fingers, but I would not classify it as life-altering.  Something well worth the time and I'd recommend that other participate in the experiment.

July 01, 2008

CGMS: Denied.

I submitted the paperwork when I applied,
But my CGM coverage was flat-out denied.

All that we want is the option to choose
What kind of dManagement tools that we use.
The technology works and it's there, on our side.
So why would requests be rejected, denied?
It's not like we're asking to have legs removed.
Instead, we are hoping our health is improved!
It costs them some money, this investment in health
But of course it becomes more a question of wealth.
These machines could save lives - does that count more than cash?
Or would companies rather see us burn and crash?

I just want the option to sleep through the night
Without lows creeping up and holding me tight.
Or the chance to see graphs that show my sugar trends
So I know how to best tweak the insulin end.
I want to be healthy.  I want to be sure
That my numbers are stable, my safety secure.
I'm a daughter, a sister, a friend, and a wife.
The investment is small when compared to my life.
I enjoy some "good fun" and I'm healthy today
And a CGM tool can help keep me this way.

When it comes to our lives, there is a clear choice.
We deserve all the options.  We must raise our voice.

For more information, click here!
 

June 17, 2008

First-Level Appeal Letter re: Dexcom Denial.

Hear me.I received a letter today from Oxford Health Plans, denying my request for CGM coverage.  "Our Medical Director has determined that the request is:  Denied - Not Medically Necessary."

My First-Level Appeal letter is below.  This is the first round of a potentially long battle, but I'll see it through as far as I can, I promise.  A price tag on my health?  I don't think so.  Here's hoping they listen.

"June 17, 2008

Clinical Appeals Department
c/o Oxford Health Plans, Inc.
PO Box 7078
Bridgeport, CT  06601-7078

To Whom It May Concern:

On September 11, 1986, I was denied a normal childhood when I was diagnosed with type 1 diabetes.  My parents were taught to measure my food, test my blood sugar, and inject insulin into my body.  We were taught about diabetes complications and how they may end my life.  We were taught to plan for the worst and hope for the best.  This was my mortality, handed to me when I was just a child.

On January 27, 2003, I was denied the ability to control my blood sugars with insulin injections alone.  My medical team determined that my diabetes would be best controlled with an insulin pump instead of multiple daily injections.  Thanks to my hard-working medical team and my personal dedication to good health, I started using an insulin pump.  My A1Cs have been lowered and my risk of diabetes-related complications lessened, thanks to the benefit of this technology.

On April 15, 2006, I was denied the symptoms of a low blood sugar while I was at the movies.  Thanks to my years of hard work and my desire to keep my diabetes as well-controlled as possible, my body was less sensitive to the symptoms of low blood sugars.  Therefore, a blood sugar of 27 mg/dl snuck up on me without warning, leaving me moments from a diabetic coma.   Currently, I experience severe hypoglycemic unawareness, leaving my body at risk for potentially lethal, undetected low blood sugars.

On May 18, 2008, I was denied a wedding without diabetes.  Surrounded by friends and family, and with my husband-to-be standing proudly at the front of the church, I walked down the aisle.  My mother cried, later admitting she always feared I would not see this day in good health.  My blood sugar plummeted, without warning, before the first dance as a result of my excitement.  I did not feel the symptoms.  I spent my first dance with my husband clinging to his arm, trying to focus and waiting for the glucose tabs I had just eaten to raise my blood sugar.

On June 13, 2008, I was denied health insurance coverage for a continuous glucose monitor by Oxford Health Plans. 

I am twenty-nine years old and have spent more than two decades living with type 1 diabetes.  My wedding was barely a month ago.  I am so excited to start a family with my loving husband.  I will not be denied the chance to have a healthy pregnancy.  I will not let my mother be denied a good night’s sleep because she’s worried her daughter will have an undetected hypoglycemic episode in the middle of the night.  I will not let my husband be denied a healthy wife. 

A Dexcom continuous glucose monitoring system receiver costs $800. The sensors cost $240.00 for a pack of four.  Over the course of a year’s non-daily use, the Dexcom system will cost approximately $1,800.00.   

Compare this cost to that of laser surgery to treat diabetic retinopathy.  Or the cost for kidney dialysis or transplant.  Or the cost of daily medications to treat high blood pressure, cholesterol elevation, or kidney disease.  Or the cost of an amputation, as well as any attendant costs for rehabilitation and lifestyle adjustment.   Please be advised that keeping me healthy now will save your company from greater expense later; preventative measures taken at the present time will mitigate the overall financial loss your company would otherwise incur in the future. 

Denying my claim to protect your company’s bottom line is to deny my chance for a long and healthy life. You have marked my claim as 'not medically necessary.'  You have boldly put a price tag on my health. 

Your denial may cost me my life.  I urge you to reconsider your decision.

Sincerely,
Kerri Morrone Sparling"

June 03, 2008

Diabetes On My Wedding Day.

Yesterday I wrote about my wedding, focusing on the parts that meant the most to me:  the man I love, our families and friends, the church service, saying "I do," and dancing ourselves silly at the reception.

But diabetes was a part of my wedding day.  We did our best to keep it quiet and unnoticed, though, using several tricky methods.  I'm like a diabetes wedding magician ... sort of.

First things first:  the dress.  Wearing an insulin pump is the easiest and least intrusive way for me to take my insulin, and I wasn't about to go off the pump just for the sake of fashion.  My solution?  Design a pocket to hold my insulin pump, hidden in my wedding dress.  I spoke with the seamstress at Ye Olde Bridal Shoppe and she and I designed something that left the pump accessible, yet hidden.

Insulin pump hidden in the wedding dress

Even if you were looking for it, the pump pocket was almost impossible to find.  Hidden along the seam of my wedding gown, it was held shut with a small piece of velcro.

Reaching into the pocket.

The hole cut in the seam was just big enough to fit my hand into, so I could reach for the pump.

Pulling the pump from my pocket

The hole was big enough for the pump to be pulled through. 

Wedding day bolusing

And once it was free, I could make whatever adjustments I needed and then slip the pump back into its pocket.

Insulin pump hidden in pocket.

The pocket itself was underneath the main fabric of the dress, attached to the petticoat.  It was sized to be about half an inch bigger than my insulin pump, leaving room for my hands to reach in and access the pump.  We stuck a safety pin to the top of the pocket so that when I reached in, I could feel around quickly for the pin and know exactly where the top of the pocket was located.  This made pump retrieval and replacement very easy.

Concealed!

The tubing itself went from the top of the pump, through a hole cut into the petticoat, and attached to the infusion site on my right thigh.  I had to plan ahead of time where my infusion set would be located so the pocket could be properly situated.

And during the entire course of my wedding, no one had any clue that I was wearing my insulin pump in my wedding dress.  Even my friends who know about it couldn't find it unless I pointed it out.  I felt empowered and like a secret agent ... only the bridal version.  

So insulin pump:  check.  And I had a few other tricks up my sleeve.  Like the flowers carried by my maid of honor:

Flowers with low blood sugar backup treater

After speaking with the florist, she devised a small pocket in the ribbon of NBF's bouquet.  This pocket could hold a life saver (as pictured) or even a tube of cake gel.  As I stood at the altar, I felt safe knowing that NBF had a quick dose of sugar at the ready, if I needed it. 

Diabetes, on the whole, didn't affect my day enough to matter.  I danced, ate cake, and experienced a wild array of emotions.  But there were a few moments when it required some attention.  Like after the ceremony at the church, when I tested and realized my blood sugar had cruised up from 156 mg/dl pre-ceremony to a whopping 380 mg/dl afterwards.  (Nerves - they hit me right in the A1c.)  Before the ceremony, I was running on the high end, cresting up around 160 - 180 mg/dl and holding steady.  And during the reception, I was too excited to eat much, so I let my numbers run higher there, too, to compensate for all the dancing. 

I did have a pretty aggressive low blood sugar just before our first dance, but thanks to my fast-as-lightning maid of honor, a glass of orange juice from the bar held me steady as we were announced on the dance floor as Mr. and Mrs. Christopher and Kerri Sparling. 

"I'm a little low," I admitted to Chris as the opening bars to "The Luckiest" played from the speakers.  He held me close and gave me a smile.

"You'll be fine.  Just focus on me.  As far as I can tell, there's no one else in this room but you." 

You may have had your moments, Diabetes, but my wedding day was mine. 

May 01, 2008

Empty or Full?

I am not the one who just lives in the moment - I'm the one preparing for the moments to come, as well.  I live it up and have a great time doing whatever it is I'm doing, but as I'm hanging with my friends or having dinner with my fiance, my brain skips ahead a few hours.

"Do I have juice in my purse for the drive home?"
"Is there enough insulin in my pump to get me through dessert and coffee?"
"How many test strips are left in that bottle?"
"I called in the prescription, didn't I?"
"If this train ends up being delayed, do I have enough snacks on me to get through?"
"Don't forget to bring home the charger for the Dexcom."
"Shoot, did I send out that article?"  (Whoops, not diabetes-related.)
"I need to buff out that scratch on my car."  (Okay, not diabetes-related either, but it looks terrible.)

It's hard for me to tell if I am this way because I'm diabetic, or if I would be this way regardless.  Would I be so prepared and fastidious if I didn't have to worry about the minutiae of diabetes?  Whatever the case, I'm always noticing how much juice is left in the fridge.  I know exactly how many bottles of insulin are in that styrofoam container.  I keep track of the co-payments, the medical insurance, and when it's time to make a doctor's appointment.  (Yet I can't keep track of my email inbox to save my life, but I've digressed yet again.)

I notice how many AAA batteries are stashed in the bathroom cabinet.  I think about when my next site change is.  And when both the insulin and battery life indicators on my insulin pump start pinging, those facts burrow themselves in my brain and stay there, gnawing until I fix the problem.

Empty and empty.

Diabetes causes me to keep a constant tally of moments, a ticker tape of tasks that run through my mind and has me always thinking ahead to the next possible scenario.  Diabetes requires so much preparation in efforts to enjoy even the smallest moments.  This is not a depressing fact - just an honest one.  But after more than two decades of doing this, it becomes autopilot.  And not just for me.

Friends:  "Ready to go ... and do you have your meter?"
My Mother:  "Do you need the carb count on that?"
Chris:  "Is there juice on the nightstand?"
Me:  (smiling because I know they love me and I know they care)  Yes. 

It's good to be prepared.  Thinking ahead keeps me safe.  (But after I refill my pump, I'm going to buff that damn scratch out of my car and send out that article.  And move closer to my wedding - 17 days!)

April 23, 2008

Lunchtime Lows.

I'm standing at the counter at the bank and I hear my cell phone buzzing.  Then I hear the Dexcom wailing out its BEEEEEEEP.  My pump starts to buzz from inside my bra (wearing a dress today).  Every bit of technology I have is exploding all at once and I'm just trying to make a damn deposit.

"Miss, I just need your account number."

"Account number, sure.  I can get that for you."  BEEEEEEEEP again.  Why is it beeping again?  It should only beep once when I'm high.  My goodness, I'm awfully warm, despite standing underneath the bank air conditioning unit.

I stick my hand into my bag and forage about.  My fingertips feel like they're trapped in cotton balls and I can't quite get a good handle on my wallet.  Instead, I grab the Dex, which is BEEEEEPing again, and press a button.

Oh shit, LOW.  Below 40 mg/dl.  I press the down button and see "39 mg/dl" next to the blood sugar graph, which now looks like the Cliffs of Insanity from The Princess Bride.

"Here is my license.  Can you pull my account numbers by looking up my name, please?  I'm diabetic and having a little low blood sugar at the moment and I need to drink this juice."  I hand the teller my license and raise up the bottle of juice with my other hand, like one of the Price is Right models.

"No problem.  I'll get your account numbers.  Do you want to have a seat?"

"No, no thanks."  I drain the bottle between words.  "I'm good.  I just need to focus a bit and let my blood sugar come up."

He typed some numbers in on his keyboard and passed my receipt through the bank printer.  "This isn't some elaborate plan to rob the bank, is it?"

I laughed.  Just drinking the juice alleviated the low-panic enough for me to act like a normal (slightly sweaty) person.  "I'm not robbing the bank.  But I may take one of those free lollipops, if that's okay."

He hands me my receipt, along with three purple lollipops.  "Here you go.  Why don't you wait a few minutes over there," he gestures towards the bank reception area, "for your blood sugar to come up?  I don't want you to drive yet."

SUM lollipops from the bank."Okay.  Thanks for your help."

And I teeter carefully on my heels (far too high for such a low blood sugar) over to one of the plush, blue chairs.  Sinking into the chair and waiting for the juice to do its thing, I unwrapped one of the lollipops.  My feet didn't quite reach the floor, as I was sitting so far back in the chair.  But I was starting to feel better.

People came in and out of the bank over the next ten minutes while I rested, looking over and most likely wondering what that grown woman was doing there, face flushed, swinging her feet, and sucking happily on a lollipop. 

April 22, 2008

Beeeeeeeeep!

Image credit to Maplenet.netWell hello - I'm rather grumpy today.

I had a moment of cyborgy-ness yesterday, when I was dressed for bed at the end of the evening, yoga pants and a sports bra, and I realized that my pants were sort of falling down, thanks to all of the gadgets hooked to my waistband.  The pump and the Dexcom, separately, are not heavy items, but together they are a bit weighty.  Even though I welcome the protection from lows and highs that Dex is offering, I felt a bit unattractive and robotic.  And my blood sugars have been troubling for the past few days, causing the Dex to sing at me with that loud, loud, loud BEEEEEEEEP!

(Note to readers:  If this post is making you feel like you want to chime in about how being sexy/attractive is far less important than good diabetes control, now is not the time.  I understand how important diabetes control is, and I work hard to achieve a relatively respectable rein on things.  But for that moment last night, I wanted to feel like a girl, not a robot.  I am entitled to these desires.  I am a real human being, not a spokesperson of any kind.  :: steps off soapbox, though laughing at the literal illustration of the bar of soap on the box over there on the right.  Hee hee. ::)

Dex and I are linked back up again this week, only this time the sensor is on my right thigh.  (My pump infusion set is on my left.  I'm sporting diabetes saddlebags this week.)  I'm hoping that having the sensor in a place that doesn't bend, flex, and deal with waistbands will help keep in place more than four days.  The numbers have been pretty precise all day long, except I've seen my first "???" indicators popping up.  According to the user manual, this means that the sensor may be disrupted by my clothes rubbing against the sensor face.  With the site on my thigh and sporting jeans today, that may be the case.  It seems to help if I keep the Dexcom clipped to my pocket, closer to the sensor itself.  However, numbers are still relatively accurate.  My faith is still strong in this product.

But the annoying bit I'm noticing the most, and which is sending me into a bit of grumpiness, is the beeeeeeping.  The "Above 180 mg/dl BEEEEEEEEP" that permeates my office.  It's not the fault of the product but more of an alarm that announces my body's failures.  It bounces off the wall, ricochets into my ears, and shaves off a bit of my ego.   "BEEEEEEP - Kerri, you're high.  Your diabetes is uncontrolled at the moment - HEY EVERYBODY!  She's high!"

Over the past two weeks, stress levels have once again crept up, and I'm finding myself a bit looped out at times.  The wedding is closer, finances are spoken for before they arrive, work is extremely busy, and personal projects are ramping up, thus grabbing and needing more of my attention. 

Most often, I'm very upbeat, quick-witted, and pretty damn smiley.  But today - meh.  I'm grumpy and frustrated with stress, the snowglobe of ideas in my mind, and that damn BEEEEEEEEEP.  I become disheartened when my efforts at good diabetes control - hell, good LIFE control - are thwarted by these unseen little factors, like stress, or maybe weak insulin, or the pile of wedding things that still need to be wrangled ... it's a bit much today. 

I would love a personal assistant.  Or, better still, a vacation.  Instead, I have a headache.  And BEEEEEEEEEP

April 21, 2008

Self-Made (Wo)Man.

Over the weekend, Chris and I visited the Stamford Museum and Nature Center (and thank God for our GPS - without it, we would be lost and eating tree bark in New Hampshire, I'm sure).  The grounds of the museum were so pretty that we snapped a ton of pictures (more on my Flickr acccount), but one of the best things we saw was the LEGO exhibit in the main building.  According to the site, "New York-based 'brick artist' Nathan Sawaya has elevated LEGO® construction to an art form. Besides recreating objects and buildings - which he does, brilliantly - Sawaya uses the LEGO® brick as other artist's use canvas, stone, or clay: to express himself and to challenge viewers to interpret his creations."

The art this fella created, using the building blocks from my childhood, was amazing.  He created a whole minature city, complete with working trains.  He made an enormous T-Rex that touched the ceiling.  And his portraits of people were amazing.

Diabetes breaks us down, but we rebuild.

This piece touched me, in particular.  I was very taken with the idea of a literally self-made man, piecing himself together, brick by brick.  It made me think of how we are constantly battling a condition that does its best to break us down, leaving our bodies needing to be reconstructed. 

Diabetes breaks us down, and we do our best to build back up.  While I don't like diabetes, I do like the idea that nothing can truly break me down.  I'm always ready to try again, ready to rebuild.  Never, ever giving up.

March 13, 2008

Beyond Insulin.

Moving away from home has been tough. 

Almost two years ago now, Chris and I moved from our respective hometowns in Rhode Island and ventured out here to western CT.  Work for both of us has been productive and has advanced our careers, but socially it's been a little lacking.  We do have each other (and he is my best friend and fiance, so we can actually hang out and have fun), and Chris and I have explored so much of our new town and surrounding areas.  We've dined at great restaurants, found some fun new places, and created bits of comfort in this strange new place. I still really love my job and my co-workers have gone from "office mates" to people I feel are my friends. 

But at least twice a month, we go home to RI and hang out with our friends, visiting Boston or Providence or teeny seaside towns like Watch Hill or Narragansett.  Even though CT has great job opportunities and the excitement of NYC just a quick train ride away, Rhode Island and its sandy beaches will always be home.  And my friends will always be my friends, whether I live in the same town as them or I live thousands of miles away. 

I realize that RI is only about three hours away from our home in CT, but sometimes it feels like we're living out on the moon.  It gets a little lonely at times, and I've missed my friends and family tremendously over the past few months in particular.  As the wedding draws nearer, my bridesmaids call often and my mother and I talk several times a week, but I miss having these conversations in person.  Truth be told, I'm homesick these days and I miss my friends to the point where I'm starting to whiiiiiine about it.

Blogging, and the internet in general, does provide a certain social outlet.  I really enjoy writing and am grateful for all of the people I've "met" in the last few years.  But there's something sterile and a bit detached about the internet.  I feel very lucky to have met people like Nicole, Shannon, Julia, and Christel who have really stepped past blogging buddies and into the parts of my life that are beyond diabetes.  For me, it's about building relationships that actually mean something, not just collecting "friends" like they're baseball cards.  And so much of that real connection is possible within this community.

Last night, I had dinner with two women who I connected with through the Fairfield County chapter of the JDRF.  One I've met before and the other is actually the sister of a guy I work with here at dLife.  (Everyone here has some connection to the disease.)  It was terrific to hang out with new people - in person! - and realize there was way more than diabetes to talk about.  The three of us tossed around the idea of a Fairfield County monthly dinner or something, and I'm totally game.  So ... long blog post short, if you're living in the Fairfield County area and would like to join us for a monthly "It's More Than Diabetes" (or something like that) dinner, drop me a line at kerri [at] sixuntilme [dot] com.

In the meantime, I'll be analyzing how much time I spend online and how I want to reposition the internet as it relates to my life.  Life is short -- too short to spend more time face-to-face with a computer instead of ... a face. 

Too linked in?

March 05, 2008

Like the Weather.

Last week, I was scraping snow off my car.  The heat was on in the apartment and we were huddled underneath piles of down comforters, often accompanied by a small and irritating gray mess.  This week, I've been carrying my wool coat into work instead of wearing it, and I'm window-shopping for kicky little skirts at Ann Taylor. 

The weather here in New England is about as predictable as my blood sugars some days.  And my moods.

As the wedding draws even closer (it's 75 days away as of today - holy crap), everything has started to seem like it's taking on some fast-forward zoom.  I blink and it's Friday again.  I fall asleep for what feels like an instant at night, only to realize it's been six hours.  It's not stress (I'm trying to leave that behind) and it's not the tasks that need to be completed, but more how quickly time is passing.  In a few weeks, it will be a full year since Chris asked me to marry him.  A week later is my wedding shower.  And barely six weeks after that is my wedding day. 

Life is a patchwork of loosely threaded fabrics with incongruous patterns and unanticipated frays.  I find my mind clutching to the most random thoughts - my imagination is on excessive overload.  I'm collapsing into fits of giggles constantly. I wonder if the people at work think I'm losing it a little bit.  Someone made a comment about how I must keep my cats in cages at home because they are so meddlesome.  I retorted with, "No, I usually peel a banana, remove the banana part, and stuff the cat inside the peel, then reseal it."  My co-worker laughed.  "The ol' cat-in-the-banana trick again."  (Oh how I'd love - LOVE - to see a Photoshop representation of this mental image.  Siah, all tucked into a banana.  I'm laughing all over again.)

They're humoring me, but I don't think they have any idea how oddly wired I've felt lately.  I'm having a hard time writing non-fiction bits at the moment but have been penning so much fiction that it's making my fingers cramp.  My imagination is roaming around unsupervised, waking me up in the middle of the night so I can scribble down the thoughts I'm hosting.  Blogging lately has been a little difficult - maybe because my brain is taking all these unapproved vacations?  Diabetes, for the most part, has been giving me little to worry about, other than the daily maintenance routine, and IBanana - courtesy of www.chidiet.com  :) like it in the background vs. in the foreground clammoring for attention.  Yes, I'll test.  And eat healthy foods.  And sport the ol' insulin pump.  And exercise.  But I'm feeling highly creative, pretty damn moody, and a bouncing blend of extroverted and introverted.  At any given moment, I could either blurt out a poem or burst into tears.

Are these the chaotic emotions of a woman on the verge of getting married?  Is this part of a woman's monthly emotional ritual?  All three?  None of the above?  Is this normal?

Oh shoot, the banana's meowing again.    

February 15, 2008

The Stress Management Six.

The Friday Six:  February 15, 2008 editionStress management has been on the top of my list for the last few months, and I've finally made it the priority it deserves.  I know that all of this cortisol coursing around in my body isn't good on several levels (contributing to higher blood pressure, hyperglycemia, impaired cognitive function ... wait, what was I saying?) and I can't let this go on any longer without making considerable efforts to change.

So, I'm taking on the Stress Management Six.  My ways of dealing with the chaos that comes along with ... life, it seems.  

1.  Better Manage My Time.  Between work, personal projects, and the wedding, I often feel overwhelmed by the tasks that need to be done and instead of tackling the "to do" list, I end up intimidating and spinning my wheels.  I need to really isolate the things that need to be done and prioritize them appropriately.  Do I really need to update my Twitter status every day?  No.  But do I need to make sure that the wedding invite list is completed by next week?  Yes.  Knowing what truly takes priority and not assigning myself too many tasks can help make better use of my time.

2.  Sleep.  Oh blessed sleep.  I have a tendency to stay up too late, throwing off my whole mindset for the next day.  More sleep is pivotal to achieving a lowered stress level.  So I'm buying new pillows.  And mushing my face into them for at least 7 hours a night for starters, aiming for 8 once I get closer to the wedding.  Part of getting more sleep also means cutting waaaaaay back on the caffeine.  I'm used to be a four-cup-a-dayer, but I'm trying to cut back.  Over the last month, I've worked my way down to two cups, and this week it has only been one cup of tea a day.  I'll eventually switch to decaf tea, I think.  Weaning off the caffeine will help lower stress, help me sleep, and keep my brain from imploding due to the jitters.  (I'm like Tweek from South Park when I have too much coffee.)   

3.  Meditation.  After speaking with my doctor this week and describing the anxiety and stress issues I've been wrangling with for a few months, she strongly suggested a meditation class to help keep me centered and help me let go of the things in my life that are tossing me into the spin cycle.  So I'm currently looking for a meditation class near my office or house.  (Which, here in Western CT - aka Soccer Mom Central - shouldn't be that hard.  It's all the rage to sit on a yoga mat and breath deeply these days.) 

4.  Breathing Exercises.  Even if I'm trying my best to avoid stressors, they will still find me.  (They have some kind of honing device, I think.) I need to find ways to deal in the heat of the moment.  I've found some breathing techniques that I can use while I'm, oh, say sitting in traffic, watching the email inbox total climb into the stratosphere, or for those moments when I mash my hand in the bathroom cabinet by accident. 

5.  Disconnect From The Internet.  I spend entirely way too much time on the computer, especially for someone who is completely social and chatty.  It's unnatural for me!  When I am at work, almost all of my day involves the monstrous computer screen (I do so enjoy the WorkMac, though), but I need to make more of a habit of disconnecting when I go home at night.  Usually, my evening includes the gym, dinner, and then more computer work.  Chris and I are resolving to spend less time online in the evening and more time hanging out.  Work can't suffer and tasks need to be completed, but being online all day and all night doesn't do much for my stress levels.  I need a freaking break. 

6.  Take A Freaking Break.  Lately, I've been mostly work and not enough play.  ENOUGH OF THAT.  I am young, healthy, and part of a wonderful network of friends and family.  I'm resolving to spend more time with my friends and less time mucking around on work-related items.  Last weekend was nice, spending it exploring a new city.  This weekend, Chris and I are tucking ourselves away into a bed and breakfast - no cell phones, no internet, and no tasks.  And next weekend, I have some fun plans with friends on tap.  Life is going by so quickly these days - I need to take some time to actually enjoy it and make some memories. 

So the plan is way less stress, which should have a positive impact on my diabetes and my overall health in general.  And if that doesn't work, I may have to move permanently into a hut on the side of a mountain.  Only it will have running water.  And a wireless connection.  ;)

Have a stress-free weekend and I'll catch you, all mellow and whatnot, on the flip side.  Yo. 

February 14, 2008

Falling In Love.

I have had diabetes for over 21 years.  Memories of life before diagnosis are scarce - just snapshots from years that were so few in numbers. 

Life has always included, for better or for worse, diabetes.  It is my reality, a part of my life that doesn't stop my world from spinning but does give it a decidedly dilgent tilt.  My family has always loved and accepted me, and I am very lucky for that fact.  New relationships, be they friendships or romantic ones, have always been laced with that slight fear of "Will they accept me?  All of me, including this condition that I manage every day?"

In many ways, I have been very lucky.  I have had the benefit of friends who love me for who I am and who also keep juice boxes in the glove compartments of their cars and find squashed "emergency" granola bars at the bottom of their purses. My employers have been understanding and patient with my scheduled doctor's appointments and my food items stashed in every desk drawer (sometimes in other people's desk drawers, too).  I am so grateful for these people who make my life exciting, fun, and accepted.

But now I stand here, barely three months from my wedding day, engaged to a man who has not only been patient, understanding, and compassionate with my diabetes, but he's made it a part of his life.  It's something we manage together - whether it's a middle of the night low blood sugar, our constant encouragement towards physical fitness, or his arms around me when I'm feeling crummy - and I feel so blessed.  I never feel like I'm carrying this burden by myself.  Knowing I have his support makes such an impact on my health, and my happiness.

We will make our vows to love one another in sickness and in health.  And I know, in my heart, that we already do.

Happy Valentine's Day to the man I love, and to my friends and family.  And to you out there in the blogosphere, for being part of a support network I could have never dreamt of but am so honored to have in my life.

Happy Valentine's Day from Chris.

February 11, 2008

Worst News Story - EVER.

This is easily the most distressing news story I have ever read:  Bride dies during marriage's first dance

According to the article, "During the couple's first dance, Sjostrom complained of being lightheaded. Efkarpides thought his wife, a diabetic, needed sugar, but she collapsed."  She was a type 1 diabetic in her 30's.

I have a whole Philadelphia wrap-up ready to post, but this tragic wedding story deserves both our attention and our prayers for their family. 

February 04, 2008

The Saddle.

Continuous glucose monitors are expensive to purchase and maintain, with costs approximating around $900 for the device and $40 for the individual sensors.  Insurance coverage for this technology is tough to wrangle, even though there have been a few break-throughs in the last month or so. 

Bottom line:  This stuff is expensive.

I have a box of MiniLink sensors in my fridge that I am able to trial at no cost to me, and I have access to several Minimed representatives that have been very helpful in getting me rolling.  I owe it to myself to give this thing another try, aiming to be more levelheaded and patient as I adjust to this technology.

Other Bottom Line:  I'm a fool not to take advantage of every opportunity I am given. 

Therefore, after a weekend home in Rhode Island spending time with friends and family and generally chilling out, I came back to work today feeling calm, collected, and not ready to give up. I'm not the giving-up type.

This afternoon, during my lunch break and at a level of low stress, I installed another MiniLink sensor.  I'm going to try this again.

Admittedly, I have a short fuse.  Things piss me off pretty quickly and are often thrown as a result.  I'm a little ashamed of my hot temper and I have trouble controlling it sometimes.  So when the CGM was pinging away, beeping and hollering and throwing inaccurate results, my fuse was lit and my temper flared.  My numbers weren't steady as a result and I ended up contributing to the problem.

I was frustrated with this thing.  Chris and I talked about it, weighing pros and cons and figuring out ways to integrate this device into my already busy agenda.  Wearing a CGM may not be the best decision for me at this point in my life, but I need to give this a solid and fair trial.  Instead of letting myself fly off the handle because the results aren't completely accurate or the device isn't completely comfortable, I need to just take what I can from this experience.   

I'm going to wear this sensor and see what I can learn from it.  I'm not expecting precision.  I won't let it replace my blood sugar tests or dictate my insulin doses.  I'll simply wear the damn thing and see whatYes, it's My Little MiniLink ... Pony.  happens.  I'll download the numbers from my pump and see what kinds of trends I can isolate from the data. And I'll continue to give you guys an honest assessment of how I feel about this technology.

Either way, I am very lucky to have access to this kind of device and this kind of outlet for discussion.  I need to make the most of it and hopefully learn something about it. 

In the process, I'm hoping to learn a little about me, too.

January 31, 2008

I Don't Want To Talk About It.

For the past three days, I have had a flickery little floater spot in my right eye.  It dances out of the way when I try to focus on it directly, but I know it's there.

Yesterday, as I was walking into the gym, I saw these beautiful and terrifying explosions in my left eye, bursting just out of my line of focus and causing my heart to sink into my stomach.  They passed after a few seconds, but I thought about them before I went to bed last night, and remembered them against first thing this morning.

This morning, when I called my retiniologist and described my symptoms and my voice broke just a small bit, they cleared an appointment for me today at three-thirty. 

It could be nothing.  I could be over-reacting.  It could just be eye strain or exhaustion or any number of stressors. It could be one of those things that causes people without diabetes to rub their eyes, shake their head, and think, "Wow, that was weird."

But I know there's already something that's been noticed.  And for me, with more than twenty years of type 1 in my past, it's something I can't ignore. 

I don't want to talk about it.

January 28, 2008

Making Decisions.

Your feedback has been tremendously helpful on this CGM front.  Thank you SO MUCH for your help.  I've had a lot of moments lately when I'm not sure what to do next, because things are spinning so quickly.  Must write that article, must finish that edit, must call that vendor, must try the newest and latest diabetes technologies, must, must, must.  Oooh, and don't forget to sleep.

There's an art to time management, one that I haven't even begun to figure out yet.   I envied people who are able to take on several tasks and get them all done without compromising their sanity.  In my own busy brain, I figured that I just wasn't trying hard enough.  I needed to try harder, and then the work tasks would be done, the body would be well-managed, and diabetes wouldn't be sending up distress flares.

But I am trying hard.  I need to learn to be more forgiving of my own short-comings.  I need to live at peace with this disease.  While it wants attention at every moment of every day, and has demanding that attention for the last twenty-one years of my life, I can't always give it what it wants.  I have a LIFE going on here, one that isn't even close to dictated by diabetes.  

"Wait, wait.  What about your job?  Your job is about diabetes!"

But it isn't.  While I'm writing and editing articles about diabetes, my job isn't about focusing on my own diabetes.   It's about raising awareness of diabetes as a whole, providing information to the public about the disease, and enjoying the inspirational vision of this company.  Diabetes-related or not, this job comes with awesome co-workers, stressful deadlines, and a full range of chaotic fun. I enjoy my job.

"Okay, then the blog.  Your diabetes blog?  Doesn't that become suffocating?"

Yes and no, to be honest.  I like blogging, and doing it for almost three years now has been awesome.  But this blog isn't about diabetes so much as my life with diabetes.  LIFE.  I know I'm in a tough place, diabetes-wise, when I see that my blog posts are focused solely on diabetes-related matters and I'm all questions and stress.  I know I'm light-hearted and silly when the stupid cat makes an appearance.  This blog, though it deals with diabetes issues, is free therapy.  It makes me feel better to write it.  And I like going back to read how I've healed.

"... so your life isn't about diabetes?"

No, it isn't.  It's about ... me.  Diabetes is just a bit player on a big stage.  And for the next few weeks, I have a wedding I want to focus on.  My mom called me about my wedding shower today and I'm completely excited and nervous and thrillled.   I have my awesome friends who are just a state away and I can't wait to see them this weekend.  I have work to do here at dLife, working on content for the new shows and having some silly moments with co-workers.  I'll always have this disease to manage, but sometimes it's easier to manage from a distance, rather than with my nose pressed against the glass. 

I'm going to take a few more days off from the CGM.  I'll call Mr. Minimed in the next day or two and tell him my plan.  And I'll wait until I'm feeling less rumpled and more at ease with other aspects of my life before throwing in the frustration of a new, albeit potentially beneficial, device. Giant, Happy Chili Pepper.  Duh.

I'm making the decision to relax, have some laughs, and loosen up a bit.  It'll all get done ... no need for the furrowed brow.  I'm not myself when I'm being so damn serious.  It's against my nature.

(Notices the huge chili pepper posterboard cut-out taped to my office wall.) 

Totally against my nature.   

January 25, 2008

On The Cusp.

I have a confession to make:  I have been having a hard time making peace with the CGM.  

There's been a lot going on in my little corner of the internet.  I've been very busy with dLife items, personal freelance work, and some exciting side-projects.  But aside from the worky bits, there are the general "life bits" that everyone contends with, from housework to financial obligations to being an equal and active member of my new little family (even if the family is only a fiance and a handful of grumpy cats at the moment).  Now add some diabetes management to the mix, with a dash of wedding planning. 

These days,  my life requires a lot of work, and there are moments when To Do lists become encyclopedic in volume.

At the risk of sounding a little overwhelmed (is it possible to be just plain "whelmed?"), I need to step back from some of these spinning plates and see if I can regain better balance.  Unfortunately, the CGM is not playing according to my master plan. 

On Tuesday morning, I put in a new sensor early in the morning, before I had to catch the 6:44 am train to the city.  Since I didn't want to wake Chris up and ask for his groggy assistance, I opted to place the sensor on my left thigh.  Standing in the bathroom, I leaned against the counter and pinged the sensor needle into my leg.  I pulled back the needle and gave the site a little press to secure the sticky tape underneath. Looked up at the counter quickly to gather up the medical waste, then looked at my leg.

Which appeared to have been shot.  With a rifle.  

There was a ton of blood streaming from the site, running down my leg.  I had to grab a quick wad of toilet paper and mop it up.  Knowing the train was coming in twenty minutes and I was still standing in my bathroom, I had to slap on several bandaids, hoping I wouldn't end up with a stain of sensor blood on the leg of my pants.  No time to become upset.  Must work through the frustration.

Bloody CGM sensor.
 

Grabbed my stuff and ran for the door, scurried downstairs and bolted to my car.  I drove to the train station and ditched my car in a no-parking zone, seeing the lights of my train in the distance.  Running like a madwoman, I dashed for the train, the site aching with every sure-footed step.  My tickets were printing as the train was pulling up to the platform and I raced into the nearest compartment. 

After finding my co-workers on the train and connecting the transmitter to my sensor site, I hoped that the day would settle down and I'd enjoy the seminar in NYC in freaking peace.  

No luck.  

The CGM pinged all day long.   "Bad sensor."  "Cal error."  "Enter BG Now."  I calibrated the damn thing four different times, had to restart the sensor once, and even after it settled down and started throwing results, the numbers were in a completely different path than my meter numbers.  Meter said 130 mg/dl, sensor claimed 246 mg/dl, throwing high glucose alarms and generally wagging it's finger at me.

Yes, I was calibrating while my numbers were steady.  I was avoiding eating so that I could hit some semblance of stride and ensure that the sensor was getting solid results.  It just wasn't working fast enough.  I understand that this technology takes time to become acclimated to and that the first day of a sensor is the most trying, but the ache in my thigh, the blood dried on my leg, and the frustration of dealing with a crying sensor instead of focusing on the seminar put me over the damn edge.

I ripped out the sensor on Tuesday night, upset and frustrated, burnt out and discouraged.  I haven't put another one back in yet. 

I pay my diabetes plenty of mind on a daily basis.  I test very, very regularly, I eat well, and I wear an insulin pump in efforts to deliver my insulin doses with precision.   I exercise more than most non-diabetics I know.  I feel like I give this disease - this body, this life - my all. 

I'm not sure I can give it more than I feel it deserves.  I'm struggling with this issue today, unsure of how to proceed.  I know that real-time results can show patterns in management and can also help protect me from the ebb and flow of highs and lows.  But when the numbers aren't correct, the alarms are beeping, and I'm spending more time dancing with a device instead of enjoying the day, I start to question the quality of life associated with some of this technology.  

I know many of you have worn  CGM devices.  How do you feel about them?  From your experience, is there a "best time" to start on one?  (As in:  Am I over-extending myself by trying this during a very stressful and chaotic time in my life?)  For someone who has worn a CGM long-term, how long did it take for the sensor to become part of your routine?  Are the results worth the hassle

I'm at a diabetes crossroad, frustrated and not sure what to do.  Any advice you guys have to offer would be greatly appreciated.

SUM Tags: , , , , ,

January 22, 2008

An Open Letter to The Edges.

Dear Edges,An Open Letter to the Edges.

You've been a part of my life for as long as I can remember.  When I was a baby, I used to lean on you in my crib.  Then there was that day when I was two years old and broke my nose against you on the fireplace.  My mother used to keep my baby bottles on you in the kitchen.

Oh Edges, you've been around forever!  From resting my elbows against you on the table in anatomy class senior year to the you above my bed where I had a library of books, you have always been there.  And we've lived in relative harmony, until the last few years.

Edges, I know you know what I'm talking about.  Listen, I understand that I've added these shifting bits of technology to my body - a pump infusion set on the outside of my thigh or on my abdomen, or the CGM transmitter on the back of my arm or on my hip.  I realize this adds an additional inch, maybe three inches at best, to my overall surface area.  But must you grab at these bits so much?

Was it really necessary for you to snag my pump site over the weekend?  I was undressing for my wedding gown fitting and the edges of my pants caught a small bit on the infusion set.  Granted, I moved slowly enough to thwart a complete site removal, but still. 

And did you really have to reach out for me when I was picking through my jewelry box this morning in search of the stupid matching earring?  I leaned against the edge of my dresser and didn't realize I was pressing up against the infusion set until I stood up straight and felt that ping of pain when the feeling came back to my thigh. 

But the last straw was this afternoon at work.  You know exactly what I mean, when I was talking with H about something and then I turned around quickly.  It was like you came darting out at me, snagging my shoulder on you and pulling the CGM transmitter almost cleanly from my arm, but not cleanly enough that I was sure it came out.  Just enough so that it stung in that oddly warm and slightly painful way, enough to make me wince but not enough to make me grimace.  I had to go into the bathroom at work, push up my sleeve almost to my shoulder, and see the sensor needle dangling from the back of my arm like a tooth that just needed a quick tug to come free.

Edges, I had just put that sensor in this morning and it was calibrated perfectly.  The results were working and I was watching my afternoon trend happily away.  But you had to reach out and say hello, didn't you?  Couldn't just sit back and let me sport this sensor for at least 24 hours before you grabbed it and yanked it out?

I am putting another one in today.  I am going to use my leg, I will tape it down to eliminate any variables, and I expect you to keep your grabby little edgy hands off of it for at least three days.  Three days, damnit. 

If I have to walk around with a giant nail file and round you all out, I will.

Best,

Kerri.

SUM Tags: , , , ,

January 21, 2008

Every Bit the Bride.

Not my wedding gown, but sort of close.The dress gathered in beaded ivory folds at my feet.  I stood on the fitting pedestal while the seamstress sat, pinning up the edge of the dress and adjusting the seam of the beading so she would be able to hem my wedding gown

"Hemming this gown is tricky because of all these pretty edges," she said through clenched teeth, her hands busy folding and pinning with precision.

"It's going to be beautiful."  I looked in the mirror and felt every bit a bride, despite my smudged make-up and my rumpled hair.

"It already is beautiful.  That dress fits you perfectly, Kerri."  My mother grinned as she watched from her chair. 

"It's going to fit perfectly after I take it up a few inches, my friend."  The seamstress laughed a bit and stood up, admiring her pinning job.  "This will work fine.  Just a lot of work to move those beads!  Okay, now tell me about the pocket."

"It's for that insulin pump.  It will need to be off the seam and big enough to fit this,"  I reached down and lifted the edge of the dress so she could see the insulin pump, hiding out in my trouser sock.

"That?  Okay.  Do you need to keep that on or can you take it off?"

"It's for diabetes.  For her insulin?  It stays on all the time."  My mom asserted from her seat, shifting around a bit.

"Yes.  It can't come off.  And the pocket needs to have a hole in it for this tubing, so it can be fitted through all the layers and reach my thigh.

"Show me this tubing."  The seamstress put her hands on her waist and furrowed her brow.

I lifted the dress and removed the pump from my sock, following the tubing up to the infusion set on my outer right thigh.  "Here.  This is the pump itself, and this plastic tubing needs to be fed through the layers of the dress so that it can reach this, "  I tapped the plastic cap of the infusion site with my finger.  "It delivers my medicine this way and needs to be connected, but hidden at the same time."

"Okay."  She reached into her sewing kit and removed a seam opener.  "So we'll just open this here and," She opened up the seam of my wedding dress and placed pins on either side, pushing the pump through the hole.  "We'll sew in the little pocket.  Maybe add some edging to it so you don't notice it.  A bit of velcro to keep it closed.  Very small.  Very pretty."

I watched her in the mirror as she took her seam opener through the different layers of my dress - from the gown itself to the petticoat layers underneath and then to the slip.  I knew once she was done with the alterations that the dress would fit me perfectly, and would have the perfect hidden pocket for my insulin pump.  A little makeup would cover up the small red marks on my arm from the CGM transmitter.  I raised my chin proudly.  I have had type 1 diabetes for over 21 years, and I have found good health and strong love and support in those decades. 

I caught a glimpse of my mother in the mirror's reflection.  Her eyes were a little red and her smile was a little softer as she watched her oldest daughter fitted for her wedding gown, the seamstress holding my insulin pump in her hand.

SUM Tags: , , ,

January 14, 2008

Sleep Deprivation.

When I was in college, I carried a full load of credits every semester and also worked a full-time job as a waitress.  My life was a swirl of 6 am breakfast shifts, afternoon classes, and closing the restaurant at night, not to mention the ridiculous parties we threw on the weekends. 

Needless to say, my hours spent sleeping were limited.  But for some reason, I functioned without too much issue.  (I should also add that during these ridiculously scheduled days, my A1c was dancing around the edges of double digits and my parents were in the middle of a very tumultuous divorce, so my physical and emotional heath were not at their respective bests.)

I'm several years past college at this point, yet still keeping the same kind of schedule.  I'm up early for work, spending nine hours at my job, hitting the gym on weeknights, and staying up late to work/watch movies/hang out with Chris/dine out/whatever.  Most often, my head connects with my pillow past midnight and the alarms start clanging around 7:15 in the morning.  The biggest difference this round is that I'm a. not drinking nearly as much and b. my A1c is tighter.

The sleep debt is starting to affect my credit.  ;)

I've had some trouble sleeping for the past week, thanks to alarming CGMs, pathetically meowing little gray cats, the power of a late night cup of coffee, and the thoughts being tumble-dried in my brain at all times.  Last night, I worked on some freelance projects until almost midnight, then spent three hours dealing with a lingering low blood sugar that refused to budge (and the CGM refused to stop bleating at me).  Was it the intensity of my run yesterday afternoon?  Is it the fact that I was back on the hormones in my birth control pill?  Is the the fact that I have a wedding gown fitting this weekend and can't stop thinking about it?  Was it the project I was immersed in last night, my brain excitedly churning out new ideas? 

Whatever the reason for my insomnia, it's taking a toll on my diabetes.  Even though it seems to be "all the rage" to be a twenty-something who crams everything she can into a 24 hour day, I don't know if this pace is something I can keep up.  Taking a spin through the 24 memory on my MiniLink, I see that I'm normal-to-low all night long, then taking a sharp spin into the oblivion of the 200 mg/dl range around 10 am and hovering there for about two hours.  Hmmmm.  I'm not going to react to this until I see it a few more times, but it's definitely something to keep an eye on. 

Sleepless nights cause distracted days for me.  I'm getting my work done and burning through my to-do list, but I'm not feeling very creative.  I'm also having a harder time reacting to my numbers.  MiniLink beeps that I'm over 160 mg/dl and I clear the alarm but don't check the insulin-on-board and lace in a correction dose, if necessary.  I'm just plodding along, drenched with apathy and craving a nap.  It's like diabetes is just a blip on my sleepy radar. 

Tonight, I will go to bed early, task-list be damned.  And I'll be bright-eyed and inspired for tomorrow, ready to deal with all the curve balls that life, including diabetes, can toss my way. 

Do sleepless nights affect your diabetes care?  How do you deal?

 

SUM Sleepy Sheep.

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January 11, 2008

What's Best.

Last night, Chris and I wrapped up on the couch and watched Signs.  As we watched the movie, I felt Chris absently start rubbing my shoulder.  His hand started at the top of my shoulder and went down towards my elbow.  I felt his fingers skip up against the CGM transmitter.  It made my eyes fill up, and I’m not exactly sure why.

I have been receiving some good data from the MiniLink so far.  It has confirmed that my overnight basals are pretty much spot-on, with a small bit of tweaking to be done for the weekends, when I sleep past 7:15 am.  It has shown me that my run at the gym makes my blood sugar plummet after about 15 minutes.  I like being alerted when my blood sugar is over 180 mg/dl because I want to spend as much time away from that high end as possible.  I feel somehow safer wearing this device; a watchdog while I am otherwise indisposed.

All of this information can help me better manage my diabetes.  Tight control can help me reach my goals of good overall health.  I’m being proactive.  I am testing and bolusing and making use of the latest diabetes technology in efforts to live a long and healthy life

That is what’s best.

It’s just hard to be so focused at all times.  I've been emotional lately.  I lost my edge.

Today, the alarm sounded on the CGM all morning long.  “Bad sensor.”  “Cal error.”  “Bad sensor.”  “BG Now.”  This rotation went on for three hours.  I had resolved to leave the sensor in and go home at lunch to change it out, but after a series of seven errors in a row, I stormed into the bathroom at work and ripped out the sensor early.

I went home at lunch and inserted another sensor into my arm, with Chris’s help.  It was the first sensor we had done on our own, so I had some trouble figuring out how to pull the needle out.  I tried.  Chris tried.  Unfortunately, we were tugging at the wrong angle and my arm became a bit mangled in the process.  The long needle remained stuck in my arm as I tried to wiggle it back, with Chris holding onto the side of the sensors.  Feeling under the weather both physically and emotionally, with the bruise already visible on my arm and a sharp pain edging down towards my elbow, I burst into tears. 

“I can’t get this out.  It hurts a lot right now.”  Tears, without asking my permission, fell into my mouth.  “I can’t do this.”

“We’ll figure this out.  It’s okay.”  Chris grabbed the CGM manual and started flipping through the pages, looking as quickly as he could for the page about removing the needle.  Frustration mounted, along with the soreness from the lodged needle, and I pulled the set from my skin.  Blood poured from the site.  Tears streamed from my eyes.  I felt defeated and frustrated and foolish.

It took several minutes to calm down.  It wasn’t about the sensor mishap.  It wasn’t about the infusion set two nights ago that stung all the way down to my toes.  It wasn’t about the low that had me sweating as I slumbered last week.  It wasn’t about the counted carbohydrates or the glucose tabs in my car or the press releases that I read every day, outlining diabetic complications.  It was simply an overwhelming sense of everything.

What’s best for me?  Is it all this concentration on diabetes?  Is it taking advantage of the technology that this decade, this job, and this blog have given me access to?  My physical health is of the utmost importance, but I value my emotional health just as much - maybe more - than I value my A1c.  Lately, my emotions have been capped up to keep me focused on my numbers.  Today, the bottle uncorked and they flooded me, leaving me bleeding and vulnerable and crying.

I dried my tears.  Chris gave me a hug.  I asked him what I should do.

“Do what you think is best.  I support whatever you decide, baby.”

Sometimes it just takes a good cry and knowing that you’re loved to make it easier to realign your heart and your head with "what’s best."

He helped me insert another sensor into my arm.  We were calm and focused.  It didn’t hurt at all.  It only bled a little, and he grabbed a tissue and blotted the blood with careful hands. 

“See?  Much better that time.”

“I was afraid if I didn’t do it again, right away, I would have given up for a while.”

He nodded.  I rubbed the sensor on my arm, telling myself that it was worth trying, that my moodiness would pass.  The pump was hard to adjust to at first, too.  Everything has an adjustment period, even what’s best.

I opened my mouth to tell him I loved him, but the sounds of the cats fighting over a cardboard box in the living room distracted us both.  Siah was leaping in and out of the box like a little gray gazelle.  It made us laugh.  And the laughter felt right.  I felt lighter.

Siah Sausage looks like she doesn't have a thought in her damn head.

Laughter, for me, is what's best.  It helps make sense of the rest of it.

SUM Tags: , , , , ,

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