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January 30, 2009

Wax On, Wax People.

After we first moved out here, Chris and I visited Madame Toussuad's wax museum in NYC and hung out with some of our fake plastic favorites.  It was a bizarre experience, and one we had to repeat with NBF and her husband when they came to visit last weekend.

So I present:  Waxing Poetic, Part II.  (There were also plenty of photos of the guys, but those fellas are shy!)

Kerri and Bono ... reunited and it ... something, something.

I had a chance to check in with Bono again.  He's cleaned up his hair a bit, which I prefer.  And I told him so.

Kerri and Jess and Jerry!  Jerry!  Bitches battle.

NBF and I also found ourselves in a tussle on the Jerry Springer Show - I was like, "No, you didn't," and she was all "Bitch, I so did."

I liked it.  So ... you know the rest.

Also caught up with my girl Beyonce and we talked about waxing our armpits.  (HA HA HA!!)

We don't look cool, but I don't care.

And for some reason, there was a 4-D movie in the wax museum - something about the environment and whales and what have you.  (4-D appears to mean that when there are whales spouting up water from their blowholes, water comes out of the seat and splashes you in the ear.  It was startling, and I kept yelling "Oooh!" when it happened.) 

A dinner at Carmine's - awesome food, in my opinion - rounded out the night.  And Chris and I were excited to share some fun with our friends who braved the highway.  Note:  Hey RHODE ISLAND, it's not that far!!! Come see us!!

This weekend I'm heading home to RI to see my college roommates and have a night out in Providence.  Hopefully the freaking snow holds off until I get home safely.  See you Monday (and Fairfield County Dinner ladies, I'll see you Monday night!)! 

January 29, 2009

Abby and Dex.

(This is embarrassing.  But true.)

At night, when I go to sleep, I tuck myself in underneath the down comforter and the blankets, I snuggle up against my husband, and I fall asleep, usually with my head about halfway on the pillow.  And Chris and I sleep.  For about twenty minutes.

Until the cats come calling.

Somehow, all 16 lbs of Abby the Fat Cat manages to launch onto my side of the bed.  (I swear the bed lists to one side.)  And instead of curling up at the foot of the bed, like a normal animal, she takes up residence on my pillow. She tries to stick her paws in my ears, she snores, and she completely disregards the fact that the pillow is meant for MY head, not her whole fuzzy body.  (Usually, I end up sleeping on about 1/8 of the pillow.)

Unfortunately for Abby, things have changed in the Sparling household.  Not only is there a Chris and a Kerri in the bed, but there's also a Dexcom.  The Dexcom hangs from a headband that I have wound around the headboard of our bed.  That way, if it buzzes, Chris and I both are certain to hear it.

And two nights ago, the alarm on that sucker sounded at 3 in the morning.  Just as the sun was stirring, the Dexcom BEEEEEEEP!ed and I vaulted up from the bed.  Unfortunately for Abby again, the receiver was sitting on her back, and she also freaked out.

BEEEEEEEEEEEP!

"Meow!!!"  Her claws come out and sink into my head.

"Ahhhhhhhh!" 

BEEEEEEEEEEEP!

Unzip meter.  Shunk.

35 mg/dl.

"Chris.  I need juice."

'Mmmm hmmm."  Juicebox with orange juice in it appears out of nowhere.  

Slurp.

"Meow!"

BEEEEEEEEEEEP!

"You okay?"

"I will be in a minute."

I'm sweaty, shaky, mouth sticky with orange juice and sleep.  It's three in the morning and I want to go back to sleep.  But I know I should wait a few minutes, so while I do, I take picture of what a 3 am low looks like:

You do realize there is very little room for my head here...

 At least she keeps my head warm.

January 28, 2009

If You're Going to Stare ...

I like this image, so I'm using it again.  :)Last night at the gym, I put my bag in the locker and took off my sweatshirt.  Wearing my black yoga pants, sports bra, and a tank top, I went into the bathroom section of the locker room to put my hair in a ponytail.

Two other women were at the sinks, chatting in Spanish and washing their hands.   They were standing to my left and as I raised my arm to put the elastic in my hair, I noticed that both women had stopped talking for a minute and were staring at my arm. Staring like I had moldy peach stuck to my arm, or maybe one of those bizarre happy spiders

Then I remembered that the Dexcom sensor is comfortably resting on the back of my left arm.  Facing them.  

I had a quick surge of "Grrrrr," as in "What are you staring at, woman?  Never seen a CGM sensor before?" ... then I had to check my attitude.  No, they probably haven't ever seen a continuous glucose monitoring sensor before.  Just because it's something I'm used to doesn't mean it's something they are used to.  After yesterday's post purge and your wonderful and inspiring comments, I felt ready to cast off some of this anger and try, instead, to help.

So I decided to smile instead.  

"I'm sorry, I don't mean to notice that you're staring."  Gestured to my arm.  "This thing - it's for my type 1 diabetes.  It's a glucose monitor."

"Oh my goodness, I did not mean to stare," said the woman in the green shirt.  "I was like, 'Is that an iPod thing or something?'  I have never seen that kind of thing before."

Her friend with the glasses leaned in.  "For diabetes?"

"Yeah.  I know it doesn't look completely natural, and I would stare, too, if it wasn't something I was used to." Glasses and Green Shirt smiled back.  "It's cool.  I just didn't want you wondering if I was some kind of cyborg or something."

Green Shirt laughed.  "Cyborg?  No, chica.  It's interesting looking.  I was waiting for, like, the music to come out of it or something.  But I didn't mean to stare.  Lo siento, my friend."

"Not a problem at all.  Have a good workout!"

I left the locker room and went to do my workout.  After I was done, I went back in to grab my sweatshirt and saw Glasses and Green Shirt getting their gear together.  Flashed them a quick smile.  Glasses smiled back.  Green Shirt tapped her left arm and gave me a knowing nod.

Some people can try to bring you down.  But others, even strangers, can raise you up.  

[Dexcom disclosure]

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 26, 2009

The Biggest Loser: Diabetes-Style.

The Biggest Loser:  Diabetes-StyleReckon that on these here diabetes blogs (spits into spittoon), we do a lot of sharing.  We share our best diabetes practices, our literal highs and lows, and we also have the common bond of this disease.  And through these shared experiences, we learn to take care of ourselves, and each other. 

(Is that Jerry Springer's line?  I can't remember.  But in any event, I mean it.)  

So when I heard about The Biggest Loser:  Diabetes-Style, I knew this was another example of the power of the diabetes blogosphere.  Turns out that 18 of our very own are taking on a "Biggest Loser" type challenge, and they're letting us follow their progress and become inspired by them along their journey. 

My friend Landileigh, creator of Landileigh's Little World and this weight loss challenge, took some time to talk with me about The Biggest Loser:  Diabetes-Style and how she's hoping it will rock their worlds!

Kerri:  What made you want to start The Biggest Loser - Diabetes Style?   And how long is the program?

Landi:  With having Chronic Kidney Disease, I need to be at a weight that won’t be so hard on my body for when the time comes for dialysis. My good friend George over at TheBADblog.com was also going through a similar weight realization and I knew he couldn’t go through this alone, and neither could I. The Biggest Loser ‘D’ Style was born with helping the two of us out. I never thought I’d have 18 people join up!  We’ll be following the schedule of the show … so 12-16 weeks.

Kerri:  What was the catalyst?

Landi:  Seeing this picture! I never realized I’d gotten so .. ummm.. large.

Kerri:  You say on your site that it's not about diet or exercise, but more about supporting one another as you work towards better health. How are you guys rallying the troops and keeping everyone inspired?

Landi:  I’m sending daily emails to everyone who is participating, and posting on my new blog at www.landileigh.com.

Kerri:  How are you holding one another accountable? How do you keep track of where people are "starting from" and what their goals are?

Landi:  No holding back, it is out there on the internet for everyone to see. If you can’t post it and show it, you can’t say to yourself that you want to do something about it.  I have a large spreadsheet in Excel that is keeping it all [the results] straight for me.

Kerri:  You have Other Diabetes, and many of the other participants are also diabetic, or the parents of diabetic kids. Does the same kind of inspiration work for all kinds of participants, or do you need to tailor your approach?


Landi:  I think the main goal is doing this for our health, diabetes or not. Obesity and being overweight is one of the largest health concerns there is today. I’m not guiding people on what their diet/exercise plan is. There are tons of them out there for them to pick from. But I am asking that people say, "Here I am! I want to do something about it!" Kind of like an AA program for being overweight. I also wanted to help my comrades in the D-force!

Kerri:  What happens when you guys cross the finish line?


Landi:  For every week that you completed that week’s challenge and sent in your weight, your name goes into a hat. At the end of the 16 weeks, names will be drawn and given prizes. So far I’ve gotten donations from Rickina at StickMeDesigns and AmyT at DiabetesMine will also be donating prizes.

Kerri:  What happens once the 16 weeks are over?
 
Landi:  Hopefully they’ll be less of us! And I’ve already been asked to start a Biggest Loser ‘D’ Style II for people that weren’t able to get in on it this time.

To follow the success of the Biggest Losers:  Diabetes-Style, scuttle on over to Landi's blog and stay tuned!  (And look out for some prizes from me here at SUM - hopefully it won't be a lock of Siah's fur.)  Thanks, Landi!!

January 23, 2009

MedGadget Awards: You Guys Rule!

THANK YOU!!!!The polls are closed and the results are in - and Six Until Me has been named MedGadget's 2008 Best Patient Blog!!

(Insert huge grin here.)

This happened because of all of YOU, and I am honored and humbled.  A huge THANKS to Manny, JaimieH, and everyone at TuDiabetes for rallying the community.  Huge thanks to Mark at Mark's Daily Apple, Val at Getting Better, Dr. Anonymous, Berci at Science Roll, David at the community at Diabetes Daily, the community at Diabetes Forums, and Jeff and the inspiring moms and dads at Children With Diabetes for their help in passing the word.  And the whole crew on Twitter (@landileigh!), at my homebase of dLife, diaTribe, and every other person who passed on the link and encouraged people to raise the visibility of diabetes bloggers.

And a special thanks to Chris, my mom, my brother, my mother-in-law, and my wonderful friends who offered their tireless support and helped make a difference. 

Even though it was my personal blog that was nominated, this is a big win for the diabetes community at large.  People recognize that patient blogging - what we do every day - is worth taking note of.  We are influencing the medical world with our patient experiences.  We are making a difference.  I can't say it better than Kevin, MD, winner of Best Medical Blog:

"Whether your vote was for me, or for one of the other worthy finalists, your participation in the Awards further cements the status of medical blogs as an influential voice to be reckoned with in the national health care dialogue."

Thanks so much, guys.  We've won as a community, and it means so much to me to know you're all out there.

January 22, 2009

BEEEEEEEEEP!s and Basals.

Damn diabetes juggling act.It's January 22, and I've been sticking with my New Year's resolution of keeping a Log Book.  (Said Log Book is currently in my home, all current and three-hole punched and was almost eaten once by Abby but then I put it in the bookcase so now it's safe.)  And after taking note of all the highs I've had in the morning hours, and the weird drops I'm experiencing just before going to the gym at night, I decided to do a little basal tweaking.

Here's the disclaimer:  Talk to your doctor before tweaking your basals.  Kerri is not a licensed CDE or a medical professional of any kind, and quite frankly, if you follow her advice, you may end up tucked inside of a banana for all eternity.  [See also:  Siah.] 

I don't take a lot of basal insulin throughout the day, but I do use many basal flucutations.  It's not one steady dose for me.  I range from .45 u of Humalog in the afternoon hours to about .75 u in the early morning hours. For a while, this worked out pretty well.  But maybe it's the lack of birth control pill hormones, or the absence of wedding-related stress, or maybe the new mousepad I have at home is shifting the tides ... in any event, I needed to make some adjustments.  I could see the trends happening by watching the Dexcom screen, so I knew this was more than just a fluke thing.  (The Log Book confirmed my suspicions.  Who'd have thought that logging could be useful!)  The Dexcom was hollering at me in the morning - BEEEEEEEEEP!ing to the point where my coworkers noticed.  

"You okay?"

"Yeah.  Frigging beeping.  I have diabetes."

Laughter.  "Oh yeah."

So on Monday morning, after another frustrating BEEEEEEEP! confirmed by a meter check showing me at 267 mg/dl (thank you, glucose goblins), I tinkered around with the patterns in my pump.  I dialed up another .2 u for my mornings, hoping to stave off the highs. 

It worked.

Yesterday morning, I woke up at 6 am with bricks hanging from any firing synapses in my brain.  The Dexcom was BEEEEEEP!ing from the headboard of the bed (where it stays during the night so Chris can see it and hear it, too) and I woke slowly.  Moving without thinking, I unzipped the meter case and went through the motions.  41 mg/dl.  Fantastic.  Seeing the number cut a few bricks loose, and I was able to shuffle off into the kitchen for juice.  (Yes, there were reaction treaters in my bedside table.  No, I didn't use them.  Instead, I found myself in the kitchen with a huge knife, cutting a slice of a brownie from the container in the fridge.  Sharp knife + Kerri when she's low + wee hours of the morning could = disaster, but thankfully no fingers were severed during the course of my low.)

Reaction treated, I went back to bed, crumbs still on my shirt.  I rested my head against the pillow and the Dexcom howled at me once more, showing me the slow bell curve towards a low that had been happening for over an hour.

"No, I heard you.  It's cool now.  Leave me alone."

Chris stirred.  "You're going off.  You're beeping.  Did you hear the beeping?  You're low."  Talking in his sleep, the poor guy.  He's on autopilot, too.

"I treated. It's okay now." 

It's a little research, a little trial-and-error, and a whopping dose of blind faith required for mucking with basals. Hopefully over the next few weeks, I can make slow adjustments to this basal crap and eliminate some of those frustrating highs.  Even though I'm sleepless some nights due to the Dexcom, I'm grateful to be able to see those graphs and lines and make adjustments to my insulin doses accordingly. 

If only it could keep me from juggling knives while I'm low.  I think I need a whole separate alarm for that. 

[Dexcom disclosure

January 21, 2009

Diabetes For The Day: Round Four

This past Monday and Tuesday, another dLife coworker volunteered to be "diabetic for the day."  (We'll call him Johnny CoWorker for the purposes of this post.)  He wore an infusion set (sans needle), a "pump," and tested his blood sugar throughout the day.  But in addition to the physical hardware of diabetes, I spoke with Johnny CoWorker about the emotional aspects of diabetes, citing how vulnerable highs and lows can make us feel, what the feelings/food conundrum is like, and what it's like to manage a chronic condition not just for the day, but for a lifetime. 

He asked a lot of questions.  And he listened.  This is his feedback about his experience with diabetes for the day:

Kerri:  You wore a “pump” and tested your blood sugar throughout your day with diabetes.  How did you feel about these devices?

JC:  The pump was not an issue for me, it was slightly weird getting used to it and when I had to decide what to wear for work. Other than my kids asking me what the wire attached to me was, I didn’t notice it.

I got the hang of testing after a little bit, and was very interested in how working out or what I eat affected my numbers.  A couple of times I got a bleeder and it stung and then one time I had to prick my hand four times to get enough blood to get a reading (rookie!).  I felt in tune with my body and was intrigued to learn my numbers each time.

Diabetic For the Day!

Kerri:  You wore the pump all day and overnight.  Was it comfortable?  How was sleeping with something attached?  Showering?  Was it difficult to dress for?  Did you almost drop it into the toilet at any point? 

JC:  Definitely the decision of what to wear was interesting – a button down shirt tucked in where the wire would be sticking out of my shirt or a sweater where the wire can easily go into my pocket.  I choose the sweater to avoid the tugging of the wire.  Relaxing, sleeping, and showering was much more comfortable than I expected.  When I bent over to tie my shoes, I caught the injection site the wrong way and it pinched, I can only imagine what that would of felt like with a needle injected.
 
Kerri:  How did testing your blood sugar affect the way you thought about food? Did you find the blood sugar testing to be painful? How comfortable were you with the process?


JC:  I ate healthy all day so no big swings high or low, but I was very cognizant of testing before I ate and then two hours after to see what affect the food had on my numbers.

A couple of times it was painful.  Initially when I first started I thought if I had to do this all the time I wouldn’t mind.  But as the day wore on I found it to be more of a burden to do and was struck with the realization that this was a 24 hour experiment for me vs. a lifetime for many others.
 
Kerri:  How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow? 

JC:  Luckily no, I exercised and ate well all day so my numbers where in a range of 83 – 121, which I was pleased with.
 
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?  

JC:  I think I do, but I don’t know that I can truly appreciate what it would be like for others unless “I had” to do all of this.  I would be interested in learning more about if I had a heavy carb meal (like my favorites – pasta or pizza) and what that might of done to my numbers.  I am grateful that I don’t have to know how food, exercise, or stress effects how I feel on a daily basis.
 
Kerri:  Did this experiment make you appreciate your health any more?  Less?

JC:  Definitely more.  I think you take your health for granted and this experiment is an eye opener of what people need to go through on a daily basis to manage their disease and their life effectively.

Kerri:  As the sibling of a sister with type 1 diabetes, did this make you think more about what your sister has experienced over the years?

JC:  This process definitely made me think about what she has experienced over the years.  We never really talked much about her diabetes until I joined dLife three years ago and I think this experience can only add to our conversations we have in the future.   
 
Kerri:  Do you think other people who are close to diabetes, but aren’t diabetic themselves, should spend a day as a diabetic?

JC:  Absolutely – at a bare minimum a day, I would suggest a week.  This was a great experience, and I think it will help me both personally and professionally relating to people who are managing this disease on a daily basis.

Thanks, Johnny CoWorker, for taking the time to get a glimpse of what our lives are like.  And to check out past Diabetes For the Day moments, click here and here and here!  :)

January 20, 2009

New Thigh Thing?

At the JDRF Walk in Connecticut this year, I met with a woman named Joan Benz.  She was tending a table of her homemade wares:  specialty pump pouches and concealment cases.  Joan is the founder of T&J Design.

Joan is the creator of a fantastic little product called "the leg cuff," and it's the Thigh Thing 2.0, as far as I'm concerned.  I absolutely cannot STAND when I'm wearing my pump on some kind of strap around my thigh and it starts to FAIL.  Nothing is more embarrassing than walking down the sidewalk towards my office and feeling that thigh strap start to slip, then slide down towards my knee, then tumble out from under my hemline - making me look like my undergarments are falling off me as I walk. 

The leg cuff is different because it's a thicker piece of fabric and there's a lining that adds some extra grip to the whole thing.  Because it is a wider structure, it isn't as apt to slide down while you walk.  And because Joan makes these herself, specific to your measurements, the fit is precise and snug. You can get the leg cuff in black or white, which makes it pretty darn versatile.  And you know what a fan I am of keeping the pump concealed and quasi-fashionable!

And while this whole leg cuff thing is a wicked cool product, there is something else that Joan makes that really tugged at my heartstrings.  Joan creates these pump concealment pieces, ranging from the leg cuff to a more standard "pump pack."  But she also makes pump packs that are doll-sized, helping a little kid with diabetes to feel more accepted and less alone with their disease.  Each pack comes with a little cardboard, doll-sized pump.  It's just about perfect.

I think having a "diabetic doll" is crucial to that acceptance stage, growing up with diabetes.  I remember I had a Cabbage Patch Kid with blond yarn hair that I named "Carolyn," and she was diabetic.  Just like me.  Carolyn had to test before she ate.  She took "injections," and she accompanied me to many pediatric endocrinologist appointments at Joslin.  Even now, years later, I remember how Carolyn the Cabbage Patch Kid made me feel  like I was normal.  Or at least a new kind of normal.  So, to me, Joan's idea is fantastic.

If you are looking for a good "thigh thing," check out T&J Design and tell Joan I said hello!

Kerri Sparling's insulin pump ... and hands.

(Also, Joan was recently named the Outreach Coordinator for the Fairfield County JDRF Chapter - my local CT chapter - so hopefully she'll have a bigger outlet for her terrific product!  Congrats on your new position, Joan!)

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 17, 2009

A Pancreas Transplant Story.

Denise Martinez used to have type 1 diabetes.  She had it for 24 years.  She also used to have cancer.  But now, Denise is diabetes and cancer free.  Her story is amazing, and she has offered to share it with us.  Here it is, in her own words:

"On April 9th, 2008 my life changed forever.

I was diagnosed with type 1 diabetes when I was 7 years old. I was diagnosed at a time when type 1 diabetes was commonly mistaken with type 2. So of course, everyone had all kinds of ignorant advice such as "Don't eat anything with sugar in it or they'll cut off your legs". It was a very scary time. Fortunately, I had a great support system. My friends were all interested in what was happening to me and they would all try to help me feel as normal as possible. They learned to give shots just as all my family members did. And my mom would make all kinds of sugar-free goodies for me. They tasted horrible because Equal and Splenda did not exist back then...LOL. I lived with diabetes and was able to control it well for many years. As a young adult, I dealt with the same things everyone else does- school, boyfriends, and independence. Living with diabetes taught me a lot of things. Controlling your diabetes is a huge responsibility. No one can do it for you. I learned discipline, patience, tolerance, and most of all that if you don't love yourself, you cannot love anyone else.
 
The great thing about diabetes (if there is one), is that you can control it. When I was 15 years old I was diagnosed with Non-Hodgkin's Lymphoma. It is a rare form of Cancer that attacks your lymph nodes. You have lymph nodes all over your body so it is very hard to treat it. I struggled with this type of cancer for many years. I had 7 different tumors. Five of which were malignant and required chemotherapy and/or radiation. Through all of this diabetes was always the main issue. I didn't want to lose control of my blood sugars because I was terrified of the complications. With so many meds and so many changes in my body, my A1C reached 8.5 at one point. I have been in remission for 3 years now. Cancer is just a memory now, but it left it's mark on me.

During my last treatments of radiation my creatinine levels skyrocketed and I went into kidney failure. Both of my kidneys were working at less than 10%. In February of 2007 I began dialysis. It is a terrible, terrible treatment that is necessary for you to live when your kidneys are no longer able to function on their own. I had a surgery to implant a surgical graft in my arm so that they could insert the two needles in my arm every session. I went to dialysis every other day for four hours for a year and two months. I decided against live donorship because I am not comfortable with someone making that type of sacrifice for me. You can live with one kidney but I still wouldn't want someone to go through the surgery and recovery. It is a huge operation. My transplant surgeon also informed me that because I had type 1 diabetes it would not make sense to transplant the kidney only. Eventually, diabetes would ruin my new kidney. It wouldn't last very long. So I got on a list to get a kidney/pancreas transplant. Just 8 days later, they called me. They had found a donor for me. I had no idea how my life was about to change.

Cut to the present: I have not taken an insulin shot since my surgery! I am no longer diabetic. Transplant is not a cure. I will always be immuno compromised. Which means I am susceptible to all kinds of bacterias and viruses. I cannot be in the sun too much AND my chances of getting cancer have increased by 45%.

But it's such a relief to feel GOOD again. Life has changed dramatically. I had an insulin pump for five years and all of a sudden- no pump. It's crazy because I still check my blood sugar. Right after I had the surgery in the hospital, I would wake up and ask the nurse to check my blood sugar because I needed my insulin. My poor husband had to convince me that I am not diabetic anymore. Every so often I wake up and freak out because I'm late for dialysis. My husband is the best. He patiently tells me the whole story all over again. I sit there and weep as if it had just happened all over again. I have NOT adopted any new behaviors. I still do not smoke or drink. I still drink Diet Coke. And I still eat sugar free candies. During my third month of recovery I DID try all kinds of delicious desserts and treats. I had to! I am more conscious of what I eat than most patients though. That is definitely from watching what I ate for so many years.
 
I am so thankful to GOD for blessing me with these Gifts. I have not only been blessed with the Gift of Life, I have also been blessed with the wonderful gift of not having diabetes for the first time in 24 years. I will always be a diabetic at heart. You guys are my heroes. I know what it's like to face that challenge every day. I pray that a cure for type 1 diabetes will come sooner than later. It would be the best gift ever for all of us. I encourage everyone to be conscious of their health. But I especially encourage everyone with type 1 diabetes to be as compliant as possible. Good control helped me to survive all of the tough challenges that came my way. While thinking of dialysis and kidney failure may be terrifying to you, remember that I lived for 20+ years without any diabetes related complications.

Take care of yourselves, love yourselves, and everything else will come into place."Editor:  An organ donor saved Denise's life. For more information, visit the National Transplant Society.

January 16, 2009

Appointment'd Out.

The Friday Six:  January 16, 2009 editionWhat a freaking long week, with a doctor's appointment every day and way too much medical analysis.  This week is a very personal Friday Six, and here it is:

1.  On Monday, I had my A1C drawn.  I've been to this specific lab before, and the same woman has drawn my blood before, so I didn't have a lot of anticipatory nerves.  But when the lab technician said, "Okay, you have lost all of your color - put your head down, Mrs. Sparling," I knew I wasn't as badass as I wished to be.  (And I also winced when I pulled off the cotton ball she had taped to my inner arm ... I'm such a wuss.)  But thankfully, the results were a full point lower than my last A1c, leaving me with a 7.5% and a reachable goal of <7% for April. 

2.  And Tuesday, I had a dentist appointment.  Those of you who have been reading SUM for a few years know that I have an unholy fear of the dentist, but it is warranted.  My teeth are so sensitive and require barrels of novocain to make them numb, so fearing the wielder of pointy metal hooks in my mouth is a rational fear.  However, my new dentist is FANTASTIC and brings me no pain.  I had my teeth cleaned (first time in ... ages, unfortunately), no cavities, and I have already scheduled another cleaning for April.  I'm considering the dentist hurdle cleared for the time being.

3.  Wednesday has me sitting at the dermatologist's office to have a new freckle on my breast examined.  (Whoa, Kerri.  TMI?)  Yes, that is way too much information, but since when did I start censoring myself?  (Since ... today?  Maybe I should start.)  Always in a constant state of medical over analysis, I decided it was best to have it checked out.  So I spent Wednesday morning having a kind, eccentric, little bald doctor look at my breast with a magnifying glass.  Definitely a "first."  This little issue ended up being nothing to worry about, but now I can check "awkward sharing moment with the Internet" off my list for the week. 

4.  Thursday had me with dilated pupils at the retinologist's office.  Of all the appointments this week, this eye one was the least ... awesome.   

"Look up ... okay, now look a little to the left ... Kerri, up again ..."  Dr. Retina kept shining the light in my left eye and making a "hmmmm" sound under his breath.  My face was cupped by the eye examination machine.

"You can't fool me.  I know you found something.  Spit it out."  My eye doctor and I have a very good relationship, and we talk like we're about to go grab a beer together.

"Small little something.  Hemorrhages in there that I want to keep an eye on."

"Pun intended?"  Without moving my face from the chin rest, I reached over and grabbed a Kleenex because I immediately started to cry.  But I was oddly okay with the news.  Maybe I've already had that bubble busted.

"It's okay.  But with you and your husband talking about maybe getting pregnant in the coming year, I want to keep close tabs on your eyes.  You've had diabetes for what, a million years?"

"Twenty-two years."  I smiled.

"Twenty-two years.  And your eyes look beautiful - barely a problem at all.  But I want to keep them that way.  Let's schedule an appointment to do a fluorescein dye exam before you and Chris are pregnant, just so we know exactly what we're dealing with."

"What is that?"

"We'll inject a dye into your arm, then do a dilation on your eyes.  The dye lets me really see what's going on in there with complete precision.  And with you, I do not want to take any chances."

"Okay.  So do I need to worry about this?  I'm worried.   You know I worry."

"You worry?  You do?"  The gentle ribbing was okay with me.  Soothed my anxiety a bit.  "You do what you're doing.  Work to keep your blood sugars controlled.  And think about taking some time off from all that work you do.  Maybe take a vacation?"

Fine.  So now I need to schedule a vacation.  Doctor's orders, you see.  ;)

5.  Now that these appointments are all behind me, I'm moving forward towards the next steps.  I am doing the pre-pregnancy clinic at Joslin in March, and Chris and I are working to get everything in order so that we can make our family-starting decisions based on factors other than diabetes ones.  It's an exciting time, and one I've been looking forward to my whole life.

6.  And in my only news-related bit of the day, this weekend is the end of the MedGadget awards, and thanks to all of your help and support, SUM is in the lead for Best Patient Blog.  I would be honored to win this award on behalf of every last one of us, so please keep spreading the word and voting!  :)  Thanks for everything, and hopefully on Sunday I can report that WE DID IT! 

I'm planning to spend the weekend hanging with my girl friends (finally seeing the Batman after a long absence!) and doing some recreational writing.  I hope you guys have a great weekend, and stay WARM!!

January 15, 2009

It's Like Golf.

Diabetes is like golf.This morning, the doctor's office called.

"Hey there, it's [Nurse From Dr. CT's office].  Is this Kerri?"

"It is.  Hi!  What's up?" 

(I talk with medical professionals like they're my buddies.  This probably annoys them, but I can't help it.)

"I wanted to let you know we got your labs back.  Everything looks stable.  No change."

My heart just sank.  No change.  But I was looking for - hoping for - change.

"No change?  That's disheartening.  Can you send me a copy of the lab workup to my home?"

"Sure can.  And why disheartening?"  I could hear a note of concern in her voice.  My doctor's office isn't big, and there are only two nurses.  I've seen this particular nurse so many times that I recognize her voice.  She's a nice person. 

"Well, my last A1C was pretty crappy.  And I was hoping this one would be a bit better, you know?"  I was driving, and trying hard to keep my eyes from welling up.  I was so disappointed.  I felt like a failure.  Another A1C above 8%?  But I was trying!

"Oh wait, you have type 1, right?  Hang on a second, Mrs. Sparling."

(This made me smile.  Mrs. Sparling.  My sadness was wiped away briefly by remembering that I was married to Chris.)

I waited.

"Mrs. Sparling?  Your cholesterol is the same [139].   Your thyroid is the same [fine].  All the other tests we checked for were totally in range.  But your HbA1C did drop - you're at 7.5%."

"OH THAT'S GREAT!"

"I'm sorry?"

"I mean, thank you for clarifying.  I'm glad the number went down.  I was hoping it would.  It's like golf, this diabetes stuff.  Lower is better."

"Well, your wedding probably made you stressed out, so that's most likely why the last one was so elevated.  I can see that your previous A1C's were all in the 6's and low 7's.  And also, is okay to say that I hate golf?"

(She IS paying attention.  I love when it's confirmed that people care.)

"I hate golf, too."  I laughed.  "Thanks for letting me know the specifics.  I feel much better now."

"No problem.  And you know what?  Thanks for talking to me like I'm a real person.  Makes me feel less like I'm a robot making phone calls.  Have a nice day, Mrs. Sparling."

it goes both ways, the appreciation of being treated like a "real person."  

And I'm glad to know where I stand as far as this A1C thing goes.  It's easier to aim for something when I at least know where I'm aiming from.  (There's nowhere to go but ... down?)  Next A1C is scheduled for the beginning of April, and the absolute goal is under 7%.  It's go time.  I know I can do it.

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 13, 2009

Guest Post From Fran Carpentier.

Today I have the infinite pleasure and honor of hosting a guest blog from my friend Fran Carpentier.  Diagnosed in 1969 with type 1 diabetes, Fran Carpentier is a devoted member of the Juvenile Diabetes Research Foundation, the Diabetes Research Institute Foundation, and the American Diabetes Association.  I met Fran at an advocacy event in NYC last October, and our friendship was instant. 

Fran has offered up her perspective on community, pregnancy, and her almost 40 years with diabetes here at SUM:

"Remember that slogan of the late 1990s that was said to come from Africa and made its way to Hillary Clinton’s book? “It takes a village to raise a cFran and Ben!hild.”

Every now and again, I use some version of it to poke fun at my diabetes.

Here’s what I might say, for example, when describing how to change my insulin pump: “It takes a village—and all the equipment in it.” Or how I complain about the American medical system: “It takes a village—and that’s just to fill out the insurance forms.” And when I’m frustrated by the difficulties of getting comprehensive, top-of-the-line diabetes care, I have been known to swipe, “It takes a village—more like a small town’s-worth—of endocrinologists, certified diabetes educators, nutritionists, ophthalmologists, internists, podiatrists, and exercise physiologists (or a helluva savvy trainer) to raise a child who has diabetes into a healthy, long-living adult with diabetes.”

After I make my point, I generally strike the term “village” and switch to “team.” Because what anyone with diabetes really needs is a team of experts who can follow his condition over the long haul, plus a support team of family and friends to boost the diabetic’s emotional well-being.

How I joined the team—or better yet, the “community.”

In August 2008, I began blogging in “Diabetes, Day-By-Day”, and that’s when I began to understand that the online “community” (in this case, the online diabetes community) is the new “team”—and a terrific team at that.

When I sit down to “belly-ache in my blog” (which is how I refer to the physical act of blogging), I’m as mindful of what I give to my readers as I am about what I get from the entire experience. All told, it’s a chance to vent, an opportunity to share news or a few shortcuts to better diabetes control, and the surest road I know to validation, which is the best reward of all, because with validation comes peace of mind.

That’s what I got when I read Kerri’s post on Monday morning — a strong dose of validation. Kerri’s coming clean about not always wearing her continuous glucose monitor on weekends validated how I felt about wanting a break from the annoying, intrusive alarms coming from my own CGM (even though I only started wearing it last week). And hearing Kerri ’fess up that over this past weekend she didn’t make the best choices in food and exercise defused the guilt I was feeling about the larger-than-usual boluses I took in order to eat extra bread…and cookies too — shhh! (Hey, Kerri! This is not a criticism! I made myself French toast for Sunday breakfast too! It was when I decided to eat half a loaf of raisin challah for dinner that things got hairy. But that’s another story.)

There is something uniquely powerful in hearing how someone else who is “walking your walk” is managing the journey. Frankly, I am just blown away by how many people are going through the same diabetes angst that I am at any one time and how much they are doing about it.

In one of my posts last Fall, I called blogging “the ultimate group therapy.” I don’t think I could ever describe it better.

The funny thing is that when Parade.com asked me to blog about diabetes, I thought to myself, “Why would anyone care about my diabetes?” But once I began to read what other diabetes bloggers had to say, I became hooked on the idea. There is some pretty powerful “medicine” going on online (in the figurative sense, of course), and it makes me realize that just as it can take a village to raise a child, it takes a cyberspace town hall to keep all of us informed, in touch, and full of hope and even pride.

I only wish that the diabetes online community and at least two handfuls of bloggers specializing in “diabetes and pregnancy” were around when I was expecting a baby. Looking back on those nine months September 1993 through May 1994, I’m amazed that the strict regimen of a type 1 pregnancy, which essentially translated into blood checks every two hours around the clock, every day for the entire pregnancy, coupled with the facts that I was 39 years old and already had had diabetes for 25 years at the time I conceived, plus the inescapable emotional pressure (“Would my diabetes harm my baby?”) wasn’t harder than it was.

The trick to getting through it, ladies? Stand guard over your blood sugar and just keep your eye on the prize. My “prize,” Benjamin Francis Salom, was born on May 24, 1994, at a robust 7 pounds, 2 ounces and received APGAR scores of 9 and 9. Excellent blood-sugar control makes good, healthy babies. Believe it!

Remember what I wrote earlier about “getting something” from the experience of blogging? Well, remembering what I went through to have Ben just gave me a new dose of determination to master my CGM. So now, I am going to phone my Medtronic Minimed trainer before she goes to sleep and hook myself up anew to that damned yet wonderful device that’s going to help me interpret trends in my blood sugar so that I can fine tune my control.

After I do that, I am going to log onto Juvenation.org, a type 1 diabetes community created by JDRF, and click on “Diabetes and Pregnancy,” and see if I can give some hope to the terrific women I know I’ll find there who are worried that they will never be able to have healthy babies. (Of course they will!)"

Thank you so much, Fran!  And for more from Fran, visit her diabetes blog, "Diabetes, Day-By-Day" at Parade.com!

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 11, 2009

Graduate Student Needs Our Feedback.

Survey says ...Happy Sunday night!  I have another reader request for help, this time from a graduate student named Devon.  She's been emailing me for several months now and is aiming to get some feedback on her thesis survey.  I asked her to provide me with a write up about what she's looking for, and this is what she sent to me. 

"I am a graduate student at the University of Denver in the Human Resources Administration program. The purpose of the capstone is to take an important current issue, that is personal to me, and make it not only a thesis paper but a project. My project is to look at how the ADA has changed over the years, especially as shaped by court cases, and how the ADAAAA intends to help restore the intentions of the law passed in 1990. My belief is that the ADA is not sufficient in improving the employment of people with disabilities because there are many illnesses and conditions that fall within the definition of the ADA, yet these people do not consider themselves disabled.

The survey therefore looks at what people know about the ADA, what they consider disabilities (by taking disabilities that are visible and those that are not) and also looking at attitudes. After all of my research it seems that doing more to increase positive attitudes by setting an example in the workplace goes farther than the protections the law provides. I do not believe by any means that we can go without the ADA. The protections it provides are vital. With all the research and the survey results I gather I hope to create a program that my own company can use to increase appreciation for diversity, especially in the area of hiring, promoting and developing people with disabilities."

If you have a minute to fill this short survey out, please click through on this link and offer up your perspectives.  And thanks!

(Note:  These are Deven's words and views, as are the contents of her survey.  These views do not reflect my own perspective or beliefs.  Just tryin' to help get the word out.)

January 10, 2009

Looking For A Little Type 2 Help.

Hey again, guys.  I received this email from a reader named Barbara who wanted some feedback re: Byetta andFaithful Readers strike again! how it might affect her.  I've never taken Byetta and I don't know much about it, but I was hoping some of you could help fill her in on what she might encounter.  Here's her question:

"I have heard lots of good things about Byetta and don't have any serious aversion to taking the stuff except that it's still kind of new, expensive, and don't feel that he is managing my type 2 properly. There are no endocrinologists in this town and a good internist is scarce as hen's teeth. Is there any body out there who would like to share their experiences with Byetta? My family practice type tells me that if I take Byetta, I'll lose weight and then I won't have diabetes anymore. I've already lost 12 pounds on my diet, but have hit a plateau and am starting to cheat big time. I have to do some thing quick. HELP!"

Can you help fill in the blanks for Barbara?  (And I love, love, love the phrase "scarce as hen's teeth."  I may borrow that from time to time.)  Thanks for your input, and thank you, Barbara, for asking!

January 09, 2009

First Friday Six of 2009.

The Friday Six:  January 9, 2009 EditionNature has told me that we're getting another snow storm here in New England.  (I spoke with a squirrel to confirm.)  So before the snow starts to fly, I'll squeeze in a little Friday Six here.  There's a lot going on in the blogosphere, and I also need a few favors from my bloggy friends!

1.  First and foremost, and totally not diabetes-related, I saw a video claiming to host the "weirdest dog ever."  I watched it, and the video response, and laughed so hard.  Not just a "ha ha, that's so amusing," kind of laugh, but more the laugh that makes your face red and you cry and breathing is a challenge.  Coworkers IM  you from the other side of the building to see if you're okay because they can hear you bleating.  But I can't help it.  It struck me as that ridiculously funny.  Watch these videos and see if you can contain yourself.

2.  Via a coworker, I was introduced to Natalie Dee's webcomic site, which looked familiar to me because I've checked out Toothpaste for Dinner before.  Natalie's comics had me giggling this week - especially this one.  Spin through and see if you can find one that makes you snort.  Shouldn't take long.

3. Movies, movies, movies.  With the weather being fricking freezing, Chris and I have been huddled up and watching plenty of movies these past few weeks.  We've seen Slumdog Millionaire (4 stars out of 5 from me - very unique storytelling and I love Danny Boyle's style), Seven Pounds (4.5 - Will Smith is always good), The Day the Earth Stood Still (1.5 stars - Keanu Reeves, go back to Point Break), The Curious Case of Benjamin Button (3.5 stars - for the record, Brad Pitt as an old guy still manages to remain foxy), and the other night we watched Grace is Gone (3.5 stars - I didn't like the way it was shot, but the performances were stellar.  Such a crush on John Cusack).  I still want to see Valkyrie and Gran Torino, and with the snowy weekend on tap, that might be the plan.  Have you seen any of these flicks?  What's your take?

4.  Okay, onward to diabetes-related goodies.  The first is about the FDA Petition that I mentioned on Wednesday.  If you are inclined to sign, visit the official petition site and add your signature.  And definitely pass it on to anyone who has, or cares for someone who has diabetes!  For more information, check out Manny's video, Kelly's post, or Amy's post

5.  And I know I already posted about Diabetes365, but I wanted to repost and say that this Flickr group is still going strong.  I know a few of us have finished, and there are some new 365'ers (and some who have recommitted!) who are making the year-long project their own.  If you haven't checked out D365, skip over to Flickr and visit the group.  And if you want to see my finished slideshow, click here.  (Thanks to Bernard and Beth for spear-heading this project!!)

6.  And in a completely self-serving request, I'm asking for some help, too.  I've had the honor of being nominated as Best Patient Blogger as part of MedGadget's 2008 Web Awards, and I'm up against some big competition.  I'm also getting trounced.  :)  I'm the only diabetes blogger nominated, and I'm hoping to rally the community and help raise more awareness for the power of diabetes patient bloggers.  If you have a spare minute and don't mind helping out, please pop on over to MedGadget and cast your vote for SUM.  And THANK YOU!

That's all I've got for today.  Stay warm, New England - and for everyone else, have a good weekend!

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.  ;)

January 07, 2009

FDA Petition For Diabetes.

A little patient perspective goes an awfully long way.

And this time, the diabetes community is rallying to make a lot of patient perspective go as far as it can - straight to the Food and Drug Administration (FDA) to urge them towards creating a Diabetes Advisory Council.

Members of the diabetes community, myself included, are co-sponsoring a petition to achieve this advisory council goal.  Here is the core goal of the petition, as written on the website:

"Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process of evaluating new diabetes treatments.  Our aim is to improve options for patients.

We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy.  Our recommendation can benefit patients without sacrificing their safety."

- Ask FDA to Better Serve Diabetes Patients

This petition isn't about passing unsafe drugs and paving the way for companies to market crappy products to our community.  It's not about turning a blind eye to drug-induced cardiovascular issues.  What this petition does is give people with diabetes, and the people who care for them, a clear voice in these government processes.  As the petition states, our "experience, focus, and keen awareness" of the needs of the diabetes community would be an invaluable resource to the FDA. 

We want safe and effective treatment options.  Diabetes is a disease that affects my life every single day, and I work hard to stay as healthy as possible.  I believe that the perspective of patients like us and those who love us can collectively raise our voices and bring newer, safer diabetes treatment options into our lives sooner rather than later.

I want a cure.

But for now, I'll settle for progress.

If you want to see a Diabetes Advisory Council created, sign the petition and pass it on.  And for more information on the programs the FDA already has in place for patient advocates, check out this link.  Help spread the word on how the diabetes community can make our collective voices heard.

January 06, 2009

Does Steve Jobs Have Diabetes?

No, he doesn't have diabetes.The internet is a-buzz with speculation about the state of Steve Jobs' health.  And "speculation" is the key word, because I honestly have no idea what the status of his health is today, nor can I begin to guess if something is wrong with him.

But when the phrase "Steve Jobs may have diabetes," is bantered about, a PWD like myself takes notice.  

According to an article in Computer World, writer Gregg Keizer stated, "Apple Inc. CEO Steve Jobs may have symptoms that resemble Type 1 diabetes, a noted endocrinologist said today, and he could be treated with insulin."  Keizer apparently spoke with Dr. Run Yu about Jobs' health, and after discussing different diabetes-related scenarios, the article closes with this:  "Even so, Yu noted that without all the information, he is essentially guessing."

Manny over at TuDiabetes posted about this article as well, and a commenter left a link to a letter dated January 5, 2009 from Steve Jobs.  Jobs states "Fortunately, after further testing, my doctors think they have found the cause—a hormone imbalance that has been 'robbing' me of the proteins my body needs to be healthy. Sophisticated blood tests have confirmed this diagnosis.  The remedy for this nutritional problem is relatively simple and straightforward, and I’ve already begun treatment. But, just like I didn’t lose this much weight and body mass in a week or a month, my doctors expect it will take me until late this Spring to regain it. I will continue as Apple’s CEO during my recovery."    

No diabetes, it seems.  But if it was, does he have to disclose that fact?  Does being diabetic, or not being diabetic, make him any less of a CEO?  Is his health our business?  Or are we wishing more that his business was our health?

Holiday Train Show.

Last month, Chris and I found out about the Holiday Train show in the NY Botanical Garden.  But due to traveling home to Rhode Island every few days, we decided to put off this excursion until January.  You know, when we'd have more time.

So on Sunday, we got an early start and arrived at the entrance gate around noon thirty.  "Two for the train show, please." 

"Next tickets are available at 5:15."

"Excuse me?"

"Whoops, 5:20."

Quick Sparling conference.  

"Okay, fine."

So here's the tricky part: How do two (quasi) adults spend four and a half hours in a freezing cold botanical garden in the dead of winter? 

Goofing off.  In anticipation of this train show, we puttered around and looked at every dead branch in the damn place.  We rode the freezing cold tram ("And on your left, you'll see the magnificant magnolias in bloom ... in June.") and looked at sculptures that resembled the Beetlejuice table that comes to life.  We hid out in the library and pretended to explore the "jungle."  We even  weaseled in to the Gingerbread Exhibit and spied on the impressive gingerbread houses (this bakery was my favorite), but after all this, there were still more hours to kill.

"Coffee?"

"Sure."

So then we stopped at every cafe in the garden for a cup of coffee.  As 5:20 drew closer, I was so buzzed on caffeine that I couldn't keep my hands from fluttering around like little birds.  "Want to see the trains?  The trains?  The trains?*"  (*Note to self.  Stop drinking so much coffee.  You're starting to tweak.)

Thanksfully, we finally saw the trains.  And I thought the whole exhibit was pretty cool.

Holiday Train Show in NYC

The intricasies of the models were very impressive.  Even peering closely into the buildings, the windows seemed like they could open and reveal a fully-furnished living space.  I'm amazined at dollhouses and train sets and anything that replicates life in miniature.  Show me a tiny tea set and I'm amused for hours.

Train in the tunnel.
 
We have a video of this train somewhere, and I just have to upload it.  But this train in particular was cool because it passed through this tunnel lined with Christmas lights. 

Kerri at the train show.

And even though the light was tough to photograph in, Chris managed to snap this shot of me in front of the Rockefeller Center replica.  (And despite my over-caffeinated state, I managed to stand still long enough.)

If you are in the NYC area and have a chance to check this out, do!  And if you have already seen it, I'd love to see your pictures.  (Here are mine.)  And (I've had too much coffee today, too, as you can tell) if you know of any other train displays or miniature stores, or similar, tell me!  I love that stuff and am always looking for somewhere else to explore! 

January 05, 2009

Dexcom Disclosure.

Dexcom is now a sponsor of SUM.I use a Dexcom CGM.  (This isn't new news, but bear with me.)  During the course of the last year, the folks at Dexcom took notice of my bloggish ramblings.  And thanks to my honest feedback (yes, I told them that their device is the most comfortable for me, but the adhesive still needs work) and their support of the diabetes community, they've decided to sponsor me here at Six Until Me and provide my Dexcom products gratis.

I am very, very proud to be part of this agreement, and I'm also very grateful.  Even though my sensors are now covered by insurance, copays and deductibles are still what they are, and I'm thankful for any financial assistance that can come my way during these tough economic times.

However, I wanted to let you guys know what the deal is because I don't want there to be any questions about my relationship with different companies.  Disclosure is the responsibility of the blogger, and I wanted you guys to know about this agreement as soon as the proverbial ink was dry on the contract.  To be clear, yes, Dexcom is giving me my sensors for free.  They are now a sponsor of this blog.  They are going to be placing an ad here in the coming weeks, and you also may see me in their ad campaigns.  And I am using their product.

But it's important to note that my decision to use their product did not stem from a sponsorship agreement.  As I've written before, I tested the CGM models that were made available to me and made my decision to move forward with Dexcom based on my actual user experience, and prior to any agreements between myself and the company.  During the course of drafting this sponsorship agreement, I spoke at length with many of the folks at Dexcom and they're well aware that everything I write about Dexcom won't always be favorable (nothing is completely awesome - these technologies are still in development across the board), but what I say about their product will always be honest.  And unedited.  (And hopefully spelled correctly.) This is the disclaimer that has been provided by the Dexcom legal team and is now living in the disclosure section of my site:

"DexCom is a sponsor of www.sixuntilme.com and provides DexCom products to Kerri.  All content is that of the author and not reviewed or approved by DexCom."

So I'll continue to discuss the pros and cons of Dexcom'ing, with honest feedback about its accuracy, the BEEEEEEP!s, how it makes me feel emotionally, the flipping adhesive problems, and the moments when it bails me out of a potentially difficult diabetes situation.  The one things I'm now biased on are the financial implications of using a CGM.  I will not be paying for my sensors during the course of this sponsorship, so when a sensor comes loose after just a day or when the accuracy is spazzing out, I can't properly convey that feeling of "Arghhhh, frigging expensive sensor waste!"  But I do know what it's like to use this device and to fight for its coverage.  And I also know what managing diabetes has been like for the past 22 years, so I'm no stranger to the expense of this disease.

There's my moment of disclosure.  If you have any questions about this, or concerns about anything, please let me know.  I'm doing my best to give a true and honest perspective to you guys, and I want to make sure everyone knows where I stand here at SUM.  I work for dLife.  I'm sponsored by Dexcom.  And, if given the option, I would sell my soul to Nikon for making such a stellar camera.  But I want to be honest with you guys and I also wanted to share this exciting (at least to me) news, so now you know.  :)

January 02, 2009

Diabetes365.

Last January, I took the plunge and joined the inspiring photogs in the Diabetes365 Flickr group.  Back then, I wrote:  "I have no idea if I can keep up with the level of dedication that the seasoned members have exhibited, but I'm going to give it my best shot."

Over the last 366 days (leap year added the extra challenge), I've lived my life with my camera at the ready, snapping photos of everything from CGM sensors to snacks ... and the moments in between.  I thought that the Diabetes 365 project would make me feel like diabetes is an overwhelming facet of my life, but instead I've seen that diabetes truly does not define any of us.  We can grab pictures of our meters and our pump sites, but there's also so much LIFE going on between all these moments of diabetes management. 

This is my Diabetes365, a year in my life with diabetes:  inspired by you guys and captured on film. 

Each photo has its own story, so if you want to see the full catalog, visit my Diabetes365 Flickr set.  And for more photos from the D365 crew, check out the Flickr group.

Oh, and HAPPY NEW YEAR!!! It's going to be an incredible one.

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