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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 28, 2010

Guest Post: A Recipe for Inspiration.

Today's guest post comes from another Barton Camp alum - Savannah.  (And, for the record, I first met Savannah by seeing her name over and over and over again on the Boathouse walls.  I had to meet the girl who had gotten her name up on the beam over the door.)  She's living with type 1 and is also a self-proclaimed artsy-fartsy type, and I'm happy to have her guest posting about finding inspiration. 

*   *  *

Savannah guest posts today on SUM.  Thanks, Savannah!!Though sometimes I might like to think it, diabetes doesn’t physically affect just my pancreas. Depending on my blood sugar, it affects anything from my ability to feel my body, to my emotions and coherent thoughts – basically anything from my head to my toes depending on the day and mg/dl. Hence, not surprisingly, it also has a large say in how successful (or not) my artistic endeavors turn out to be.

It’s pretty safe to assume that everyone has experienced the car crash known as god awful singing at some point – most likely multiple points – in their lives. Whether your congested friend is belting, “If love is a labor I’ll slave till the end” during a late night drive home, or your strep throat, metal-in-a-blender, voice makes passerby cringe as you drive around in your convertible, it happens to the best of us. And even though no one (well, no normal people, at least) can quite hit those blasted high notes in “Happy Birthday” it’s still frustrating, especially when you’re in one of those slap-happy, sing-songy moods where all you want to do is dance around the house and sing at the top of your lungs (and be the recipient of your neighbors', who are playing golf outside in the backyard, looks).    
To me, what’s even more frustrating is singing (when I’m really inspired – usually between the hours of 1 and 4AM) with ketone-breath – what I call that dried out, spongy, sugar-coated, just heavy cotton-mouth feeling my mouth and tongue get when my blood sugar is, let’s just say, not below 300. Ironically, it is quite hard to hit the right tones when you’ve got the ‘tones, and high blood sugar + inspiration = time to whip out the audio editor.

Now, I’m no superstar singer, but I am a writer, photographer, montage-maker, friendship bracelet connoisseur, doodler, you name it – I’d like to think, pretty artsy-fartsy. I write poetry that I convert to songs and, when I am really inspired, I write lyrics.  I like to pretend I play guitar (even though I only know a couple chords), and realistically, when you have original lyrics and music, you've gotta mesh the two together and sing.

Problem is, when my blood sugar is high or rapidly rising, I sound like Miley Cyrus at the 2009 Grammy Awards – like screechy metal, and when my blood sugar is too low, I can’t even see the guitar strings clearly let alone strike the right ones. (I also can’t write anything of remote, coherent, intelligence and practically don’t have eyes for seeing let alone the “photographer’s eye.”) In a nutshell, doing what I love doing involves ensuring that my blood sugars are stable and in range.

I have absolutely no idea if it’s biological or psychological – or if the two are connected in any way – but I’ve found that I can focus, sing best, and harness inspiration into producing an essay, song, photo, etc most successfully when I am slightly dropping from, for example, 140 to 90, or even 120 to 100.

With college-essay season in full gear, and being in the middle of recording for the first time, I’ve gone to extra lengths to be on top of my ‘betes (trialing the Omnipod being one of these lengths.)  And if you were to ask me my recipe for a successful artistic endeavor, I would give you a nice little note card to put in the location where you work your magic (for me, I write, sing, and play guitar in my bathroom – weird, I know, but best acoustics in my house):

Savannah’s Recipe for Producing Whatever Your Diabetic Artsy Fartsy Little Heart Desires:
(Makes 1 serving)

1 ¾ cup inspiration
4 cups water
¾ focus
2 ½ cups emotion
1/3 sinus health
¼ cup sugar **

** Depends on your sensitivity factor

*   *   *

Thank you so much for writing this, Savannah.  I'm printing out that recipe and sticking it to my mirror.  And for anyone reading, what's your "recipe" for staying inspired?

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 24, 2010

The Friday Six: Incessant Ramblings Edition.

Friday Six!  Because the cold I am coming down with is taking me prisoner and my brain is fried and I'm trying to figure out how to not pass this cold onto the baby.  Also, I like run-on sentences. Onward!

1.  The ePatient 2010 conference is taking place in Philadelphia next week, and I'm happy to be joining one of the panels as a guest.  Any Philly locals around on Tuesday night for a meet-up?  Let me know in the comments or by email and hopefully we can set something up!  (Note:  I love Philly.  I love Rocky, therefore loving Philly is a must.)

2.  Here's a photo from a Toronto film exhibit that I forgot to upload:

I'm melting ... meeeeeeeelting...

That's one badass melted Vader.  End of item No. 2.

3.  The editorial team at BlogHer asked me to contribute a guest post about the great, elusive "cure" of any kind of diabetes.  And I was happy to oblige, with "There is No Cure for Diabetes."  If you have a chance to skip over to BlogHer and check the post out, that would be awesome.  (And yay for Drew Carey for dropping the pounds.  Now he and Halle Berry can have ice cream sundaes together at night and talk about the great uncured.)

3.5.  I like this ALOT.  A lot.  (If you haven't visited Hyperbole and a Half, you're totally missing out on some of the oddest, most frantically amusing internet cartoons I've ever stumbled upon.)  And, just for the record, I love that an ALOT looks like a VW bus shaped wooly mammoth.

4.   The idea is simple.  "As diabetics we spend a lot of time at the doctors. For the next year, let's all take a picture of our waiting rooms every time we have a diabetes related appointment. So take a picture (at your own risk), post the date, and whatever else you want to share about the picture and let's see just how much time is spent Waiting With Diabetes."  George and Sara have a new group on Flickr called "Waiting with Diabetes," and the concept is just that - photos of waiting rooms.  (And am I the only one who is convinced one of the members will end up photographing another member of the diabetes community without realizing it?  ;) )

The Friday Six:  September 24, 2010 edition

5.  And now that BSparl is older and more mobile, I'm looking to find a few good diabetes support buddies that are local to me.  (Like the Fairfield County Dinner Ladies whoI miss terribly!)  If Providence, RI is driving distance for you and a monthly meeting sounds like something you'd like to be a part of, drop me a note!  We're looking to start in October, and the more the merrier!  (And if you already responded on Facebook, I've got an email out to you today!) 

6.  Today is Friday.  Friday the 24th.  Of September.  Which means that the limited release of Buried is tonight, and that the nationwide release on October 8th is only two weeks away.  That, to me, is pretty damn exciting.  And because I am a very proud screenwriter's wife, I wanted to share a few links to some press bits I've really enjoyed:

Roger Ebert's review of Buried.
Chris guest blogs on MTV.
USA Today writes up a review of Buried.
Ryan on Leno.
The Huffington Post reviews Buried.
Access Hollywood reviews Buried.
Vanity Fair calls Buried One of the Best Films of the Year.

Proud = me.

And with that, I'm off to blow my nose and store vitamin C tablets in my cheeks like a squirrel.

(Note:  This edition of Friday Six has seven items.  Because I'm spaceshot.  Game over until Monday - I'm going back to bed.)

September 23, 2010

The Last Breastfeeding Post.

This is the last TMI post about breastfeeding, so bear with me as I lay out these last, awkward details.  :)

BSparl is five months and one week old, and for three months straight, we did breastfeeding only.  Around the three month mark, we started to work in a bottle of formula here and there, and about three weeks ago, I started weaning her in earnest. 

I've heard horror stories from other moms about the weaning process.  I've heard that your poor boobs can become so engorged and sore that you can actually get a clogged milk duct or mastitis.  I've also heard that the weaning can be extremely painful, both emotionally and physically, and that the mother and the baby go through varying levels of discomfort and detachment.  Basically, I've heard that stoI'm sorry - the opportunity to reuse this photo is too good to pass up.  :)pping the breastfeeding process sucks.  (Pun frightfully unintended.)

So that's why I started weaning slowly, and stretched the process out over a few weeks' time.   At first, I started replacing breastfeeding sessions with a bottle for BSparl, and I would see how long I could go without pumping.  I started by skipping some of the evening feeding sessions first, as I seemed to make less milk at that time of day anyway.  After a few weeks, I was able to go about seven hours without needing to pump.  Over time, I was able to cut out the breastfeeding sessions almost entirely, except for the morning one. 

And last week, I stopped the morning sessions, too.  Admittedly, those are the ones I miss.  Having her wake up with a big grin and kicky legs, and then we'd settle into bed without waking Chris up, snuggling close and doing our thing.  But due to the weaning and the slowing down of my body's natural production of milk, even the morning feedings weren't enough.  I started to have to supplement her with formula even after I'd breastfed her.  And I didn't have the desire to take any of those teas, etc. that stimulate more milk production.  If my body was deciding I was done, I didn't want to push it. 

So we had a long talk one morning, she and I.

"BSparl, it's time to go full-throttle on the bottle now, okay?  Are you okay if we stop breastfeeding?"

She stared at me.

"So in the morning, we'll have a bottle together. We'll still snuggle and stuff, but your food will be formula.  Cool with you?"

She grinned and opened her mouth in an attempt to shove her foot in.

"Okay, good.  I love you.  So much."

"I love you, too, Mommy."  (Okay, so she didn't actually say that.  She did mush her fingers up my nose and say "Mmmm-aaaaaaah-goooooo-naaaaah!"  Which, to me, is close enough.)

The decision to stop breastfeeding wasn't an easy one, but it's best for me and my family.  My daughter had the benefit of three full months, and then two more months of partial breastfeeding, and I hope her immune system thanks me for it.  And now I'm free to go back to my previous medical regimen, which will include switching from Labetalol back to Altace for my blood pressure, and also the inclusion of L Glutamine and mass amounts of coffee. 

Now?  The challenge will be to make sense of my insulin needs, now that the breastfeeding months are behind me.  I'm currently on a teeny amount of basal insulin (0.25 per hour) due to the calories burned by milk production, so now I need to find out what my new, post-pregnancy insulin needs are.  And judging by the 200 mg/dl that would NOT leave me alone on Monday, I think it's time for a basal test - stat.

Personally, I'm proud that I made it five months with breastfeeding.  It wasn't easy, but after a few weeks, it definitely wasn't as hard as I thought it would be.  And while I don't care how anyone else decides to feed their child, I'm glad I had this experience with BSparl.  

September 22, 2010

Month Five.

Pancake,

Seriously?  Five months old you are?  (And apparently Yoda I have become?)  Wasn't it just yesterday that I was prepping for surgery, trying to mentally prepare for the arrival of my daughter?

BSparl, you are getting BIG.  Of course, in your case, "big" is a relative term, because you're barely clocking in at the 25th percentile for height and weight, but for your little peanuty-ness, you are kicking ass AND taking names.  Rolling over is so last month, and you're now working hard on creeping along the floor.  If you roll over onto your front, you are quick to get on your knees and try to scoot along on the ground.  I think we're just a few short weeks away from crawling, and once you're mobile, we're in deep ... stuff.  

You've discovered your voice, and you love testing it out.  Sometimes you'll play on your playmat and YELL at your toys, hollering your face off as you tell the teething monkey toy, "Your feet are MINE!"  You babble incessantly:  at your toys, at your feet, at the shower curtain while I'm showering, at the video monitor attached to your crib (that's a fun one, having you look right into the camera and say "AHHHHHHH!"), and at anyone who makes eye contact with you.  Waiters at restaurants are now the recipients of your highly audible HI!!!s and your drooly grins.  You want to chat up everyone in the world, and when they give you a smile, you throw one right back at them.  You're a friendly little bird, and your agreeable nature is contagious. 

Kid cracks me up.

You are also helping me earn my mommy stripes.  Like yesterday.  We visited Target to pick up a few things, and you ended up giving me the gift of a massively filled diaper while we were there.  No worries - we just went into the bathroom to take care of business, but while we were in there, you were accosted by a sweet older lady who wanted to tell you what a cutie you were.  To thank her for her kind words, you proceeded to dip your socks into your icky diaper, leaving a trail of messiness in its wake.  And it wasn't until we were back out in the store that I realized the same messiness had ended up streaked up my arm.  Awesome.  Walking around Target, literally covered in poop.  Thank you, little bird, for making me feel like a real deal mommy.   (And thank you, People of Target, for letting me open and use every hand wipe in aisle 12.  I felt strange paying for empty containers of wipes at the checkout counter, but the cashier didn't ask, and I wasn't going to tell.)

This past month, you had your first extended overnight stay at Grammie's house while we were traveling, many visits to Home Depot (the guys in the flooring department love you), and we're getting ready for some solid food in the next week or two.  And later this week, you'll be sleeping in your own bedroom in the Big Crib (which looks like a football field when your teeny self is in it).  You like going for walks in the stroller, and visiting the mall (you also appear to like Ann Taylor, smart girly), and losing socks.

And I've heard that beautiful sound on your lips a few times today.  That "mmmm-mmmm" sound.  The one that will eventually lead to "Mama."  I can't wait to hear my new name from your sweet little mouth.

Love you,
Mommy

September 21, 2010

Buried in Things to Do.

Last week, I wrote about how much has been going on in our lives lately, and how the travel, moving, and general chaos has affected my diabetes control.  This week, I wanted to share some photos from our travels.  Because it's not all diabetes in this piece.  (Um, yo.)  And also because this whole experience has sort of been beyond words, so I'm hopeful that photos will do their "1,000 words" thing.


The Buried poster on the streets of Toronto.


Chris, Ryan, and Rodrigo at the TIFF press conference for Buried
Photo courtesy of Getty Images


The Sparlings looking mighty startled at the Buried pre-party (sponsored by Blackberry)
Photo courtesy of Getty Images


Chris and Rodrigo at the NYC special screening (with me hiding in the background)
Photo courtesy of Getty Images

The Toronto Film Festival was incredible - different from Sundance because this festival had a very upscale feeling to it (instead of a more casual, warm, go-build-a-snowman feel).  We were out until all hours of the night (BSparl was with my mom, so we took advantage of the time away) and just trying to take it all in.  And the NYC screening was super cool, with an entire theater filled with celebrities watching the movie that Chris wrote, Rodrigo directed, and Ryan performed the hell out of.  It's been nutty.  Nothing like eating dinner and having Clint Eastwood stroll into the restaurant.  Or seeing Helen Mirran leaving our hotel.  Or Paul Giamotti in the hotel lobby.  Or going for coffee while Chris spends hours talking to members of the press.  Or hearing that release of a collectively held breath as people in the theater watch the end credits roll.  (Sorry for the peacocking here, but I'm one proud wife!!!  This has been an incredible journey for Chris, and it makes me so, so happy to see his hard work paying off in such a big way.)

(And here is where I must mention the propeller plane experience.  Chris and I flew out on a direct flight from Providence to Toronto, and our tickets were very generously provided by the team at Lionsgate.  Foolish travelers that we are, we thought the seats "3A" and "3C" on our tickets were indicative of first class seating.  But when the teeny, 20 seat propeller plane pulled up on the tarmac - because it was too small to pull up to the gate proper - I turned ash white and said to my husband, "Oh.  That plane has propellers."  And then started to cry out of panic.  Dear readers, I hadn't taken any medication to help me fly since we were in Barcelona last summer - since BSparl was on board.  But I popped some right quick when that plane arrived.  And then we boarded the plane.  And I realized that I could see out the same window that the kind pilot was watching the world from.  I have never been more freaked out on a plane in my life.  And honestly, I have never been on a smoother flight.  Despite the fact that the plane was roughly the size of a minivan and my heart was in my throat for the entire two hour and eight minute flight, it was the chillest flight of all time.  I feel like I hit a milestone by successfully traveling on that prop plane.  Granted, I was especially thankful for the mega-plane that we flew on our way back home, but still - I flew on a prop plane.  That, for me, is a very big deal.)

Buried opens this weekend in select cities, and nationwide on October 8th.  If you're in the NYC, LA, Philadelphia, Dallas, San Francisco, or Chicago area, you can check out out on Friday, September 24th!   

September 20, 2010

Guest Post: From Pumping to Pens and Back Again.

Today I'm happy to host a guest post from fellow Clara Barton Camp alum Abby.  Abby helped orchestrate my visit to CBC this past summer, and I'm thrilled that she didn't mind telling some of her overseas travel stories here on SUM.  This post touches on that delicate dance between insulin pumping and pens ... and back again.  (And what the hell is in blood pudding, anyway??)

*   *   *

Abby and an adorable puppy.This past August, I traveled to Scotland with my family, and no matter how hard I tried to leave it behind, my diabetes tagged along. I’ve traveled overseas before, but not since I was 15 and then I was more concerned about which lip gloss to bring than how to best manage my blood sugars.  I had a lot of thinking to do this time. Working at CBC the six weeks before my trip really helped me figure things out.

I finally decided to take a pump break and use Lantus and Humalog pens for a few reasons:

  1. Call me crazy, but it makes me really uncomfortable to be wanded down by random strangers in blue suits because I have a pump in my pocket. 
  2. We decided to only bring carry-ons since we didn’t want to hassle with luggage at the airport (or pay the ridiculous fee to check a bag) and pump supplies take up a lot more space than a few extra pens and some needles. 
  3. I was concerned about re-arranging my basal rates to fit my new wake/sleep cycle and figured Lantus would give me a steady basal, and slightly less tight control; a sacrifice. 
  4. I was getting ready for a pump break anyway (I tend to take one every year or so, it’s nice to have your pants fit the way they should without a plastic lump in your pocket!)

Hurdle #2: For some reason, ever since I was a tiny human, I’ve always taken Lantus in my left leg (big fan of alliteration, I suppose).  This meant revealing my thigh on an airplane full of strangers while flying over a very large ocean. Awesome. Final decisions before boarding the plane: wear yoga pants for easy thigh access, give three other people in my family a bag with insulin pens and glucose tabs, and have the note from my doctor clipped in my passport at all times.  Oh and don’t talk to strangers.  Land of tea and scones here I come!

My blood sugars were high on the plane (sitting around for six hours made me stuck in the 300s for a while (awesome) and then the sleep deprivation caught up to me and decided I should be in the 60s until we ate dinner … or lunch … except it was 9am in Scotland.  (Oh silly time differences.)  Everything was going just swimmingly, until we went out to eat the first time … time to put those years of carb guessing - I mean counting - to work.

The food in Europe is, well, lets just say different than food here in the States. I ordered a ham and cheese toasted sandwich (nope, not a grilled ham and cheese) and hot chocolate, figuring I could fairly accurately carb count the bread and typically hot chocolate is either with or without milk.  Oh boy, was I wrong. The bread had butter on both sides, I’d never tasted cheese like that before, and I’m still not quite sure what was in that mug of steaming brown liquid. Forty-five minutes later, in the 300s again.  Sweet. (At least this gave me a good reason to pass up a sample of blood pudding, especially after the waitress couldn’t tell me what was in it because it was “just a mix of everything” … no thanks).

My family is very into trying the food at different places when we travel, and I’m totally down with that idea, but about three days after these uncountable meals and bouncing from 50-350 every few hours left me feeling like a slug and packing my own PB&J sandwiches whenever we went out to eat (I do have to give some credit to their equivalent of the FDA, because the carbs were counted on packaged food down the the 0.1g … If only my Humalog pen could accommodate!)

After a few days of diabetes interrupting my trip we came to an understanding and my blood sugars leveled out enough for me to enjoy my time in Scotland.  My family was awesome and understood that we couldn’t eat out as much (which saved us a bunch of money too) and we had a fairly routine schedule the whole trip which really helped.  I only forgot my Lantus once, and remembered about three hours later, which worked out alright.  Will I take a pump break when traveling overseas again?  Most likely not.  I rely far too heavily on my active-insulin feature and my CGM sensor. But I don’t regret trying it this way, and things worked out just swell.

So after some minor ups and downs and a big fat fail at carb-counting, the trip was still a success. And even though I rarely use diabetes as an excuse, I sure didn’t mind saying no to the mysterious substance known as blood pudding.

*   *   *

Thanks, Abby!!  If you've taken a pump vacation, how did it fare for you?

September 17, 2010

Diabetes Control = Hot Mess.

I want to stop picturing these every time I test my blood sugar.Exhausted doesn't even begin to explain how I'm feeling at the moment.  Over the last few days, we've moved into a new house, worked and lived through some construction efforts in our home, traveled to the Toronto International Film Festival for the Buried Canadian premiere (by propeller plane, but more on that panic attack later), and then hoofed it to NYC for a screening (more on that later, too).  Our house is chaos, our schedules are all over the place, and my health management is under duress.

Even though all of this stuff is exciting and the journey to get here has been incredible, it's a lot to manage all at once.  I love to travel, but I hate the actual process of "getting somewhere."  I don't travel light, I have some physical limitations that make travel difficult (read:  tendinitis so bad that I can't lift a bag without wussing out), and I'm still not a fan of flying.  That, combined with the lack of sleep and a wildly varying schedule (including nights that push the 3 am envelope - hey, college throwback!), is a recipe for disaster with all the diabetes stuff.

Blood sugars have had pockets of success, like last night at the Tribeca screening, where I held rock solid between 100 - 150 mg/dl all evening long.  But there have been some disastrous runs, like the night of the Toronto screening, where I was over 280 mg/dl for four hours, despite boluses.  (I eventually took an injection and pulled the site, but the site seemed fine.  I hate when the cause of highs can't be nailed down.)  I'm testing a lot, but my body isn't responding to things normally.  Foods that I'm usually able to tolerate, numbers-wise, are now throwing me into the stratosphere  or tossing me into the trenches.  I'm living on a steady diet of coffee and lip gloss.  Infusion sets are staying in for four days at a time (instead of the three days I had committed to while pregnant - absorption is so much better when you follow the damn rules) and I think the last time I changed my lancet was when BSparl was born.  

I'm a hot mess.  And not in that cool way.  More in that "Geez, Kerri, you think you're cured or something, the way you've been acting lately" way.  (Note:  Haven't been cured.  Just a very scattered diabetic these days.)

I'm not sure if these hiccups seem more dramatic because they're in contrast to the very tight, very obsessive control I had while pregnant, but in any event, I'm not pleased with my lack of commitment to sparkle motion.  (see also:  hot mess)  But I have to get things back under control.  Events for Chris seem to be coming up every week, and I want to be physically ready to attend with him.  (As in, I don't want to be 39 mg/dl.  Or 399 mg/dl.)  And this is all without mentioning my smiley little daughter, who would do well to have a mom who isn't bouncing all over the blood sugar map.  

The next six weeks will be challenging for me, as both a diabetic and a new mom, because it's sort of non-stop until the holidays.  And even though the events are coming and going, the diabetes isn't.  I can't spend the next six weeks winging it.  I need to find a way to do these things without sacrificing all of my diabetes control.

I can do this.  If I was able to get my terrified arse on a propeller plane, I can wrangle in a blood sugar or two. 

September 16, 2010

Diabetes Police and Diabetes Criminals.

At TCOYD, one of the sessions I attended was about Diabetes Police (Health Care Providers) and Diabetes Criminals (People with Diabetes).  And I was a little taken aback by the title of the session, but we used it to our advantage when we walked into the session a few minutes after it had already started.

"Okay, we see a few late stragglers in here.  It's not like they had to be on time or anything," Dr. Edelman quipped from the front of the room, giving us a smirk.  

"I'm sorry we're late.  But what do you expect?  We're the criminals, man!"  I shot back at him.  And the crew of us "criminals" took up the last few rows, our smart phones at the ready to Tweet out the best of the session.  (We were the total nerd row.  :) )

The charismatic team of Dr. Bill Polansky and Dr. Steve Edelman were running this session, and it was packed with both PWDs, caregivers, and medical professionals.  Bill and Steve took to the white board, asking first for complaints that PWDs have about healthcare providers.  The list that was compiled ran the familiar gamut:

  • HC providers are always late
  • They don’t work together (one doc may recommend a treatment that contradicts a specialist's recommendation for another condition you may be living with)
  • Docs set unreasonable goals
  • Patients are blamed for blood sugar numbers (the whole "good numbers/bad numbers" discussion)
  • Patients want positive feedback, too, not just the negative stuff.  (Stacey brought up a good example of her most recent A1C being the lowest she's ever achieved, and her doctor said, "Nice job!!"  It feels good to get patted on the back when you deserve it.)
  • Docs say that they don’t have enough time to answer all the questions
  • Audience member:  “[My blood sugar numbers were] creeping up for a long time, but ‘all of a sudden I was diabetic.’  Where was the preventative measure to bring them down?”
  • One patient summed up the "seven minutes we get" sentiment with this statement:  “It’s so hard to believe he’s paying attention because his hand is always on the doorknob.”
But it wasn't all patients ranting about healthcare professionals.  The HCPros had their time to voice their frustrations, too:
  • Insurance companies actually grade us on the number of diabetes patients that make it “to goal” – regardless of the advancements that patients make, even if they don’t hit “goal.”
  • One doc asked:  "Why can’t patients 'get to the point' and bring the most diabetes-related issues to the table?  I want to help, but I can't help with every issue they have."
  • Hearing the statement “You don’t know what it’s like to have diabetes.”  Hard to make improvements suggestions because they aren’t taken seriously.  (“I am an RN and my son thinks I can’t prick his finger, but his girlfriend can prick his finger.”)
  • “I ran out of my meds.”  Patients need to remember to renew/order/take their medication.
  • When patients don’t update their medication list.  “You know what I’m on.”
  • When patients don’t know their own A1Cs
  • “You never told me I was borderline diabetic.”  Frequently, patients aren’t very honest about what they’re eating.    (Bill:  “So they’re also liars?”)  Going on another medication costs too much, they don’t want a second med, etc.  (Bill:  Jokingly points to the word “idiots” on the sign.)
  • Patients make up numbers on their logbooks, but the downloaded blood sugars form their meters tell a different story.
It was a good natured discussion, but some important points were raised by both sides.  It's not just the PWDs who are grappling with the healthcare system - doctors and nurses and CDEs are tackling issues, too.  "We're graded on how many patients we have that make that goal [the A1C target set by the American Diabetes Association], even if the patient has made tremendous advancements towards good health."  (This issue resonated for me, because I've always struggled for an A1C under 7%.  That pre-pregnancy goal took me a long time to achieve, and I conceived my child at an A1C of 7%.  It dropped immediately and stayed very low and steady throughout my pregnancy, but for me, a goal of 6% pre-pregnancy was near impossible for me to hit without harrowing lows.  My doctor and I had to take the blanket recommendations into account, of course, but we also had to tailor goals to my individual diabetes needs.)

Kelly Close's awesome shirt.
I want this tattooed on my face.

The most refreshing moment of the session was near the end, when Bill took the microphone and offered this story as almost an aside.  

“I realized I’ve told patients to keep 3 days of food records, but I’ve never done it, myself.  So I tried it.  And I lied.  I lied on my food record, to myself.  I was like, ‘I ate one Oreo.’  But I ate a whole sleeve of cookies.”

The doctor/patient relationship is just like any other - filled with dissenting opinions, moments of high triumph, and personal emotions.  Living with diabetes, our disease requires our detailed attention every moment of every day.  My hope is that healthcare professionals left this session understanding that their patients are more than their A1Cs, and that patients walked away knowing that healthcare pros are people, too.  And that there's a way we can meet in the middle and improve our diabetes health.

September 15, 2010

TCOYD Providence: Recap.

I couldn't have thought of a better way to spend my 24th diabetes anniversary than at a Taking Control of Your Diabetes conference in my home state of Rhode Island - and with a bunch of diabetes buddies, to boot!

Saturday dawned bright and early as I headed to Providence for the conference (though not as bright and early as it did for Karen, who was on the road at like six in the morning - she's hardcore!).  Immediately, I ran into Karen and her smiling husband Pete, and then we stumbled into everyone else at the exhibit hall.  

Chicas of the diabetes blogosphere!
Ashley, Faye, myself, Tina, Karen, Stacey, and Val

Kelly Close, Kerri Sparling, and Bernard Farrell
Kelly Close, me, and Bernard made it, too.   (Better late than never!!)

While sessions were interesting and the discussions were lively, the highlight of this conference was the lunchtime speech given by Urban Miyares, a Vietnam veteran who has been living with diabetes since he was 19 years old.  Diagnosed after losing 67 pounds in two weeks and then collapsing on the battlefield in a diabetic coma, Urban was sent home to adjust to his diagnosis.  

Yes, you read that correctly.  He was invited to join the Paralympic team as a downhill skier, and not only did he join, but he won.  Many times.  "But not at first.  My rear end was frozen that first winter, from sitting on the snow so much." 

I couldn't believe how much Urban had been through, and how much of his body had been compromised as a result of diabetes (complications exacerbated by the Agent Orange chemical he was exposed to during the war, his doctors suspect), yet he was up there making jokes.  And laughing.  



Diabetes makes an inconvenient mess of a lot of things - how much we have to travel with on a regular basis, how often we are lancing our fingertips or poking ourselves with infusion sets or syringes, how many doctor's appointments we have and the lows and the highs of both our blood sugars and our emotions … but there are some very ugly complications that come as a result of this disease.  It's not all rainbows and unicorns and invisible disease.  Sometimes, this disease is very visible.  

And sometimes you meet someone who has experienced so much of the worst this disease has to offer.  And you wonder how you would handle it, if it were to happen to you.

But losing your sense of humor isn't a side effect of diabetes.  Losing your ability to find the good in your life and to grasp on to it with both hands isn't a side effect.  And neither is your ability to inspire.  So thank you, Urban, for showing us that even when you've lost your sight, you haven't lost your ability to help us see what life is all about - laughter and love.

And thanks to TCOYD for such a great event!!

September 14, 2010

Guest Post: Project Greenlight.

I couldn't be more excited to be hosting Lindsay's guest post today.  Even though she and I have yet to meet in person, she's definitely a kindred spirit.  She's recently married, itching to start a family, and dealing with type 1 diabetes every day.  She has graciously offered to share her words here today, about her quest for a little baby of her own. 

*   *   *

Lindsay and Mike, at their wedding

The anxiety sets in the second I set foot into the building, just like it always does.  There’s the all-too-familiar heartbeat that you can hear in your ears.  It’s so loud that you wonder if everyone else is hearing it too.  The stinging cold sweat that you can feel creeping up around you.  You know the one I mean.  I’m waiting at Dr. G’s office to find out the results of my latest A1c.  But this time is different.  This time, the result is going to tell me whether or not we get the green light to have a baby.  Gulp.  I hear her at the door.  She walks in with her sassy heels and perfect hair.  I can’t read the look on her face.  Oh God, oh God…is it good or bad?  GOOD OR BAD?  “Lindsay I couldn’t be more proud of you than I am right now.  Your A1c is 6%.”  The grin on my face and tears in my eyes say it all and I cannot wait to bolt out of there so I can call my husband.

But…to really understand what an achievement this is for me, you might want to know a little bit about where I was just a few years ago and what got me here.

I was diagnosed with type 1 diabetes on April 6, 2003, just a few weeks shy of my 27th birthday. I had been ignoring the signs and symptoms for far too long and had the weight loss and hair loss to prove it.  I was scared straight just after my diagnosis and became what I like to call a “model diabetic.”  I tested methodically, counted every carb and gave myself shots.  I never did get used to the way the Lantus burned when going in, but my A1c went from 15% to about 7% in three short months.  Great, right?  Well, yeah, it was.  But it didn’t last.

I had a very time-consuming job that had me traveling the globe and visiting countries with menus in languages that didn’t even use a familiar alphabet.  How was one meant to count carbs in a country where you were not even remotely certain of what you were eating?  After one too many experiences of fighting with Russian bartenders and Indonesian security guards screaming “I NEED JUICE RIGHT NOW” and them not understanding what I needed so desperately, I decided it was easier not to give myself insulin when I traveled.  This is bad, but it’s worse if you knew just how often I traveled.  And so my A1c climbed higher and higher.  It reached about 12% which is where it stayed for a good number of years.

I was in the midst of that cycle when I met my husband, Mike.  I was intensely private and protective about my diabetes, mostly because I was ashamed that I wasn’t taking care of myself.  I certainly didn’t want to show him my biggest weakness, but he already knew something wasn’t quite right.  He loved me enough to gently ask why he never saw me test or take a shot, and my fierce protective nature would bubble up and lash out at this wonderful man who was only trying to help me.  Thankfully, he stuck with me and loved me despite this nasty habit I had gotten myself into.  I realize now that because I didn’t WANT to have diabetes, I acted as though I didn’t.

After we were engaged, he encouraged me to give the pump a try.  I had been adamant against it because I feared being attached to something 24/7.  I had heard that the pump could truly be life-changing in gaining better control, so in May of 2008, I became a pumper.  While my A1c would dip back down to the mid 8% range here and there, it would always wind up climbing higher.  It was a roller coaster of management.  

In the midst of wedding planning, I Googled “wedding dress” and “insulin pump” in the same thread and found Six Until Me.  I read every single post of Kerri’s in the days that followed and forwarded the link to my family and close friends.  I was overjoyed that I had found the DOC through her and that I found a whole community of bloggers who not only felt the way I did, but who were brave enough to put it all out on the table for others to benefit from.  That kind of selflessness and courage is what changed my life.  I’ll say it again, because it’s that important to know.  The DOC, beginning with SUM, CHANGED MY LIFE.

My “cooler than the flip side of my pillow” husband and I have been married nearly two years now.  And we want a baby (a lot.)  About a year after our wedding, he said something to me that I will never forget.  It was the last shove I needed on the road to gaining and maintaining better control.  “There’s no time like the present.  We both want this.  If we’re going to have a baby, then we know what we have to do.  We have to get that A1c below 7% together and I will do anything I can to help make that happen.”  He used words like WE.  US.  For the first time, I realized I was no longer in this fight on my own.  I had a partner in crime who was going to help me get to the place I knew I had to be.  With Mike by my side and my army of DOC friends, I knew I could do this.  I am really proud to say that I have.  Green light?  It’s on.  (Right, Kerri?  wink)  

*   *   *
Thank you so much, Lindsay, and I can't wait to introduce you to my family this fall!!

September 13, 2010

Guest Post: After an Open Letter the JDRF Opens Up – Part I

This week, Chris and I are attending the Toronto Film Festival, where Buried will be screening tomorrow night.  While I'm away in the lovely (and frigging cold) Canada, I have some fellow PWDs who have offered to guest post.  Today's post comes from longtime type 1'er, Scott Strange, who wanted to share his discussion with the JDRF Grassroots Advocacy Program.  Below, you'll find Part I of his three part series, so be sure to check out his blog at Strangely Diabetic for the full story!

Take it away, Scott!

*   *   *
 
Scotty Strange of the DOCFirst off, I would like to thank Kerri for the opportunity to be a guest blogger here on Six Until Me.  Kerri was one of the first D-bloggers I “found” when I started discovering the DOC, so this is really is quite an honor for me.  I swear there were times when my feet felt swollen…  
 
Recently, I wrote An Open Letter to the JDRF where I was pretty critical of the organization and it’s apparent attitude toward adult Type 1 community, especially those of us who had been out here the longest.  Replies to my post mostly showed agreement with what I was saying, but also showed that the amount of T1 “support” varied from local chapter to local chapter.
 
I had a reply from a member of the KC Chapter’s Board of Directors.  We had dinner one evening at a local BBQ place and he filled me in on the local adult efforts going on which sound very interesting and I’m excited to start participating in locally.
 
I also had an offer of a phone interview with Mike Kondratick, who is based in Washington, DC and is the Director of the JDRF Grassroots Advocacy program.  He is part of the Government Relations Office and, as such, tends to deal strictly with raising money from the public sector; whereas the local branches focus on private sector fund-raising.
 
First, a little background on what the Government Relations Office, and local advocates from all over the country, make happen through meetings with federal legislators.  The general appropriation to the National Institute of Health (NIH), as directed by Congress, for all disease research is about $29B annually.  T1-specific research sees about $283M of the $2B allocated for all diabetes research.   Through the Special Diabetes Program (SDP), another $150M is allocated every year, bringing the T1-specific research funding total to about $433M annually.  The local Chapters raised nearly $100M in 2009 with about 80% dedicated to funding research.
 
The Government Relations Office has 13 staffers, including two T1’s and the mom of a child with T1.  They are a pretty small staff compared to some other “big ticket” disease organizations.  Thus, they try to take the “squeaky wheel gets the grease” approach to get in front of legislators as often as possible, with as many people telling their story as possible.
 
Also managed out of that office is the Artificial Pancreas Project (APP).  Many of the roadblocks facing the APP are regulatory ones, so it is a good match.  Personally, I believe that the APP is a very important, if not critical, slice of the diabetes management pie.  Let’s face it; we are not going to see a T1 cure any time soon and getting a medical device approved can be a much quicker process, in theory at least.   The better control we are able to establish, the longer we can put off complications and the better off we are.   When you look at the costs of treating complications years down the road; the savings to the healthcare system could be enormous, not to mention the potential increase in the quality of our lives.
 
I asked what role he sees for adult T1’s in the JDRF Grassroots Advocacy arena.  The goal is to get as many them in front of lawmakers as often telling their stories of how diabetes affects their lives.  The JDRF is really very small compared to other groups such as cancer and heart disease and basically “competing” for the same research funding, so they try to become the “squeaky wheel” by putting T1’s in front of lawmakers, usually at their local office.  This allows a highly personalized message to be delivered, one that the lawmakers tend to remember.
 
The JDRF Children’s Congress is held every other year and is really designed to be a big media event; putting children and their families in front of lawmakers at Congressional Hearings.  The adult T1s that are there are usually celebrities and the JDRF uses their fame to bring additional attention to Type 1 diabetes.  It is also important that the children with diabetes (CWD) see these celebrities and can maybe gain some inspiration from them.   Now the only issue I have with this is that celebrities often don’t have the same financial restrictions placed upon them as the vast majority of T1s.  They may have someone on the payroll whose job is to make sure their condition is properly managed.  They don’t worry about the cost of test strips or insulin.  This, in my opinion, presents a pretty skewed picture of the actual affects of diabetes on adults to the media.   Hopefully, lawmakers have spoken to enough adults to see the difference, but honestly look at the myths that are out there.  Media really hasn’t caught on and we need to change that. 
 
They try to organize two to three events every year to get advocates of all types in front of lawmakers at both the federal and local levels.  The meetings back in their home districts tend to be more impactful as they are usually more one-on-one and they’ve been very successful in making sure that the legislators remember these meetings.  But to accomplish this, they need people at the local level willing to tell their stories; and at the end of the day, these stories are just as impactful as the stories of children and their parents. Every other year, the JDRF also runs a program called The Promise Campaign that is specifically designed to facilitate these meetings.
 
Mike sees two main groups of adults involved with the JDRF’s advocacy activities.  1) people, often parents soon after diagnosis, that invest themselves quite heavily in the JDRF’s research- and cure-focused messaging and advocacy and 2) adult T1s.
 
Before the APP, there was really a limited stream of messaging to adult T1s.  The JDRF didn’t tell a coherent story about how the things they did helped improve people’s lives on a daily basis.  Their story was about what will hopefully happen at some future point in time.  This may be a very key point in the “rift” between JDRF and adult T1s.   The JDRF is laser focused on fundraising for research and a “quantifiable” result for them may be just learning something that can help find the cure.  But as a T1 myself, that result is pretty much meaningless as far as things go on a daily basis.  To me “quantifiable = hands on”, when can I get one?
 
One of my frustrations with the JDRF was that the messages I did receive always “wanted” something; but what was I getting out of the deal?  I could never find an answer to that question.  As I bemoaned earlier, the Spring 2010 newsletter for the Kansas City Branch had an article about having a local T1 get together, but absolutely no mechanism for finding out more, not even a clue where to check.   I see a lot of us, not the JDRF, out here trying to do this on our own, providing the type of support that we, as long term adult T1s need and answering those who are asking for help.
 
This is where Mike sees great opportunity to improve communications between the JDRF and the adult T1 community.  They basically haven’t been focused enough on reaching out to the adult T1 audience, looking for ways both can benefit from a partnership.   Besides financial contributions, there is so much additional information out there that a collaborative approach could greatly benefit all.   They are currently weak in this area, but Mike believes that steps are being taken to improve this and thinks we should be able to see some measureable improvement by this time next year.  But still, he recognizes that doesn’t excuse the fact that the JDRF hasn’t performed well in this area previously.
 
The JDRF is moving to a more collaborative approach than they have had before; talk “to” people, not “at” them.  They can’t reach the goals they want to reach without people feeling more motivated to stay engaged at the local level, not necessarily just with the local chapter itself, but locally as a group of advocates to get things done.  This is where the Grass Roots Advocacy program comes into play.
 
Stay tuned tomorrow for Part II at Strangely Diabetic.

*   *   *
Thanks again, Scott, and the pleasure of hosting your post was all mine.  (Also, I hope your phantom ankle swelling went down.  :) )

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 09, 2010

Running with Diabetes.

I don't run.  Not well, anyway.  Running isn't my activity of choice because my body doesn't do well at high speeds.  But when I go walking or any other exercise that's outside and brings me far away from my car, I grapple with that whole "what the hell do I do with my diabetes supplies" issue.

For the most part, I usually carry a small bag.  Sometimes I bust out the meter from it's protective black case and throw it into a SpiBelt, adding in a tube of glucose tabs and my keys and cell phone and ... suddenly, I'm a pack mule, careening up the mountainside. 

I am not a "travel light" diabetic.  I'm a messy, throw-it-all-in-a-bag-and-hope-you-don't-lose-the-bag diabetic.  But some PWDs have figured out a terrific way to keep tabs on their diabetes while exercising.  Like my friend Melissa (a fellow Clara Barton Camp alum), who MacGyver'd her meter into her running shoes.  Here's a shot of her kicks, that she's graciously allowed me to share with you guys:

Melissa "Rebel" Kauffman and her diabetes running shoes.
Photo credit to Melissa K.  She also has a series of glucose stashes on her run route, in case of a low.  Clever girl!  (But no, I have no idea where she keeps the actual test strips.  You'll have to ask her.)

I think this is brilliant!  How do you keep your supplies at the ready when you're on the run - literally?  Are you like me, with an awkward bag of everything, or are you as streamlined as the pictured PWD?

September 08, 2010

A Diabetes Meme.

I love these chewy little things.Finally, a blog meme just for those of us with wonky pancreases (and for the people who love us).  If you're in the mood for meme'ing today, have at it!

What type of diabetes do you have:  Type 1  (So tired that I originally wrote "type 12."  Clumsy fingers.)

When were you diagnosed:  September 11, 1986. (24 years ago this Saturday!)

What's your current blood sugar:  Um, my fasting was 58 mg/dl.  That sucked.

What kind of meter do you use:  One Touch Ping

How many times a day do you test your blood sugar:  When I was pre-pregnancy planning and then pregnant, I tested 15 - 20 times per day.  Now?  I'm aiming for 12 but I'm hitting more in the 8 range.

What's a "high" number for you:  Anything over 160 mg/dl.

What's do you consider "low":  Anything under 70 mg/dl. 

What's your favorite low blood sugar reaction treater:  I stick with boring old grape juice, mostly, but sometimes I love those candy orange slices?  So sticky and nasty, but those potent little suckers work!

Describe your dream endo:  Compassionate, attentive, non-judgmental, and part of my insurance network.

What's your biggest diabetes achievement:  Having that round-headed little biscuit baby.

What's your biggest diabetes-related fear:  Honestly, a heart attack.

Who's on your support team:  My husband, parents, close friends, and the diabetes blogosphere, of course!

Do you think there will be a cure in your lifetime:  I was given the old "five more years - we're so close" rundown when I was diagnosed, and I received that same platitude for years afterward.  Do I think there will be a cure?  I'm not sure.  But I think there will be advancements that make diabetes far less of a burden, and I also hope there will be ways to deal with diabetes-related complications that will make those complications just a blip on the life radar.

What is a "cure" to you:  I'd love to have medical science reverse my autoimmunity and set my islets straight, but I'd also take some version of a device that helps my body auto-regulate insulin levels.  An artificial pancreas would be nice, for starters.

The most annoying thing people say to you about your diabetes is:  "You must have it really bad."  ("No, I like totally have it awesome.  Hathat.")

What is the most common misconception about diabetes:  That my type 1 diabetes can be controlled with diet and exercise.  I hate that misconception.  As if I'm on insulin because I didn't work hard enough or something.  Or as if a healthy diet and regular exercise are only recommended for diabetics. 

If you could say one thing to your pancreas, what would it be:  "Get a job!!"

September 07, 2010

TCOYD: Providence!

I'm excited to TC.When I saw "Providence, RI" on the list of cities for the 2010 Taking Control of Your Diabetes conference, I thought it was a typo. 

"Rhode Island?  Who picks Rhode Island for a conference location?"  Pause, and then a grin. "Smart people."

Because Rhode Island is awesome.  (Note:  Born and raised in Rhode Island, I'm a little biased.)  A very short drive from Boston, MA and a decent but doable drive from NYC, my home state makes for a great place to kick off the fall conference season for TCOYD.  

So what are you doing on Saturday, September 11?  I'll be at TCOYD, hanging out at the health fair and attending as many sessions as I can.  I'll also be marking my 24th year with type 1 diabetes that day, and I'm excited to spend my diabetes anniversary at such an inspiring event.  Not a bad way to spend the day. 

If you're in the New England area, give some thought to registering today for the TCOYD conference in Providence.  If you register before tomorrow at noon, you'll score the early bird registration fee of $25.  (It goes up to $30 if you register at the door, so it's a good idea to get involved early!)  And if you're planning on attending, let me know!  I'm excited to meet you!

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!

September 03, 2010

Bah Hahbah.

What's the smartest thing you can do two days before you move out of one place and into another?  Why, visit the grand old land of Bar Harbor, Maine, of course!

Just before we left on Friday afternoon, I was tweaking out because there was still so much to pack and so many work things to take care of and some really important travel arrangements to schedule and ... the list goes on.  But Chris and I have been making the trek to Bar Harbor every year, and dammit, we weren't missing this year just because of some pffffft move.  (Note:  We should have gone two weeks before the move, instead of two days, but that's neither here nor there.  Actually, it's there.  As in "the past."  Where I should leave all my bitching and moaning about this move.  Done and done.)

But the trip was a good idea because there is something oddly calming about Maine.  I love Bar Harbor.

The view from Cadillac Mountain

I love the vast beauty of Acadia Park.

Kerri at 2 Cats. YAY!!

I freaking LOVE the 2 Cats Inn.  They have the best breakfast of all time, I believe strawberry butter should be served with everything, and their coffee isn't too shabby, either.

This was a hard climb for my post-pregnancy messy self.

I love hiking up mountains that I had to skip the summer before (because there was a baby on board we hadn't told you guys about yet).  I also love that these hikes replace boluses more often than not.  Ah, the power of exercise and the crisp Maine air!

Whynahree in Bah Hahbah

I love the fact that Maine has a blueberry wine (and we have a bottle of it in our fridge downstairs).  

Bar Harbor is so serene.  I dig that feeling of being completely disconnected from work and Internet and all that stuff that sucks you dry.  The flowers are beautiful.  The popovers at Jordan Pond are delicious and the perfect way to rev up on carbs for the long hike around the pond.  The rocks that resemble butt cheeks are startling.  The blueberries are so petite and I cannot figure out why.  But I do - I love the place and I really enjoy that Chris and I have made this trip part of the miles we put on our cars every summer. 

Such a shame that we've left the beauty of Bar Harbor behind for another year ... and now we're bracing for this Earl fella to show up in New England.  Have a safe weekend (and if you're bored, there's a whole stash of Maine photos in Flickr)!

September 02, 2010

Diabetes and Moving: Fun.

Every time I look at this bit of clip art, I picture the cats driving it.You know you're a diabetic moving into a new place when:

  • You pack extra glucose meter test strips, baby diapers, and toilet paper into the same box because you know you will need both on the first day.
  • You're watching at the window for the cable guy so you can get yourself back online and immersed in the diabetes blogosphere.
  • You don't care that there's an ice maker in the new fridge, but more than there's a handy compartment that's PERFECT for insulin storage.
  • There's a whole box labeled "Diabetes Supplies."
  • You're grateful that the hardwoods are being installed because it will be easier to find rogue test strips.
  • The washer dryer combo looks like a spaceship command unit and you have no idea how to work it.  (Wait, that's just me?  Domestic goddess I am not.)
  • Even though the fridge is almost entirely empty, there's still a bottle of grape juice at the ready.  (And a pitcher of iced coffee.  Priorities!!)
  • You buy a smaller garbage can for the kitchen to leave room under the sink for a massive, red sharps container.
  • There's a space in the walk-in closet that's dedicated solely to stacking insets, insulin reservoirs, and test strip bottles.  Not to mention lancets, which I've had the same seven boxes for the last four years and I never manage to use them up.  (Something tells me I should change my lancet today.) 
  • And: You test the wall outlets by plugging the Dexcom receiver in to charge.
Diabetes plus moving totally equals fun.  :p

September 01, 2010

Diabetes 24/7.

The Dunlap crew was at Friends for Life this past July as TheBetes: Now, filming people talking about their 24/7 experiences with diabetes.  Bennet (brave soul) decided to stick me in front of the camera for a few seconds so I could offer up my take on what defines me.

247 Kerri from thebetes now on Vimeo.

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