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Type 1 Diabetes: An Invisible Illness

If you just snapped a quick picture, you wouldn’t see it.  Not unless you were looking for the small signs, like my insulin pump.  Or my spotted fingertips.

Type 1 diabetes isn’t something you can see on me.  It’s not an illness that, at this point in my life, comes with any constant external symptoms.  I am fortunate enough to not use a wheelchair or need vision assistance devices.  You can’t see my disease, even though it’s something I manage every day.

I seem “normal.”  (Stop laughing.  Let me use the word normal for the sake of this blog post, at the very least!)  I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.

And I am happy.

But my good health is not without great effort.

Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter.  Every meal I’ve eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose.  And every night has my finger pricked by a lancet before my head hits the pillow.

This isn’t a pity party.  Not by a long shot.  My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I’m now wearing medical devices 24 hours a day, every single day.  And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn’t like the idea of a small child dealing with this disease.

Kids are fun to cure.  They’re cute.  And their futures seem worth investing in.

What confuses me is how quickly people forget.  Type 1 diabetes became a part of my life a long time ago, and I don’t remember even a snippet of “the before.”  But even though I’ve lived very well with this disease and kept it from defining me in any way, it’s still here.  And it’s still something I deal with every day, regardless of how well or poorly controlled.  But just because I’m no longer a little kid with the bright, shining future, am I any less diabetic?  Any less deserving of that cure?  Just because you can’t see my disease, and because I seem to have it under physical and emotional control, does not mean it’s past the point of deserving a cure.

Here is a vlog post that I did back in February about vlogging during a low blood sugar and how “diabetes can look so normal yet feel so rotten.”   It’s a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:

Children with diabetes grow up to be adults with diabetes.  And all the while, we’re still ready for progress. And for hope.  And for a cure.

This week, September 14 – 20th, is Invisible Illness Awareness Week.  And today, I’m raising my voice for type 1 diabetes.

*This blog post was originally published at Six Until Me.*

Six Bad Habits Of A Woman With Diabetes

I WILL be good!Taking a cue from Rachel and Cherise, I wanted to post my diabetes “bad habits.”  (Unfortunately, it didn’t take long to come up with six.)  But thankfully, after months and months of extreme tweaking, my bad habits aren’t nearly as bad as they used to be.

1.  Bolus-Stacking. (See also:  rage bolusing)  I have a very, very bad habit of stacking boluses when my blood sugar is high.  You know … test and see that 212 mg/dl, take  two units to correct it back to 100 … test again 45 minutes later to see 245 mg/dl staring back at you … freak out and take another unit for good measure … test one more time an hour later to see no real change … lace in two more units because you’re angry and frustrated and sick of the high … only to crash five hours later with a 45 mg/dl with your face mushed into a can of Pillsbury frosting.  Not that I’ve done that. But if I were to do that, it might play out just like that.

2.  Carb Winging It. Until recently, I’ve been an estimator.  A SWAGger (scientific wild-ass guesser).  Someone who kind of wings the whole carb-counting thing and hopes that there were only about 15 grapes in that snack bag or that the apple was really “small” instead of “medium.”  With the little weeny doses of insulin I take, counting carbs with precision is crucial to making sure my numbers stay stable, so when I’m guessing as to the carb count, the blood sugar results go all over the place.

3.  Shooting with a Mouthful. This is a bad habit pointing out by my endocrinologist a few months ago, and one that was wicked hard to break.  And I have no idea how I ended up in this terrible habit to begin with, but it’s not good.  I had a terrible tendency to start eating, then decide to bolus.  Even if the carbs were counted perfectly and the insulin dose went in without issue, I wasn’t giving the insulin any time to act before introducing the carbs.  Thus, making my numbers go berserk after meals.  No more shooting while I’m eating. Now I need to shoot up before eating.  Makes a big difference.

4.  Self-Consious During Workouts. Another bad habit.  When I go to the gym, I used to leave my insulin pump at home and then reconnect when I returned.  It worked out to keep me from going low during workouts, yes, but it was also because I didn’t like having the device attached to me while I was wearing form-fitting workout clothes.  Stupid Kerri.  Sure, I was avoiding the lows, but I was also ending up close to 180 mg/dl by the end of my workout.  With pre-pregnancy goals of 150 or lower, this is unacceptable.  So I have to suck it up and wear the pump while I exercise and even sometimes go easier during a workout to avoid lows, instead of sacrificing blood sugar control for an extra mile on the treadmill.

5.  Log Lagging. I have a good habit of starting logbooks, but a terrible time keeping up with them.  This has been a hard habit to break (habit to break), but I’m close to turning it around.  Logbooks are my diets – I am excellent at the outset, but then I fall apart.  Thankfully, I’ve got a team at Joslin and a husband at home who are helping keep me accountable, and it’s making a world of difference.

6.  Blame Game. And a sixth (but certainly not the last) bad diabetes habit that I have is my role in the blame game.  I put a lot of pressure on myself to get things “right” and when the diabetes outcome isn’t what I’m hoping for, I tend to blame myself.  I have to constantly remind myself that strong efforts and a decent attitude go a long way in this marathon, and I can’t beat myself up for every low or high that crops up randomly.  Diabetes isn’t fair, and it isn’t easy, and it sure as hell isn’t my fault, so I just need to roll with the punches as gracefully as I can.

What are your diabetes bad habits?  Or maybe it’s better to ask – what are your good diabetes habits?  I’m going to have to concoct another “good” list soon – they’re way more fun.  🙂

*This blog post was originally published at Six Until Me.*

Mom-To-Be Goes Decaf Cold Turkey

I did it.

I started my mission while we were on vacation in Barcelona, because between the time change and our eating schedule and the fact that sleep was a hot commodity, it was a good time to let go of the caffeine addiction.  No real withdrawal, no extreme headaches, and no unrighteously sassy moments where I can’t function “WITHOUT MY CUP OF COFFEE DAMNIT!”

This is a big step for me, because coffee and I were buddies.

Love it.

Bestest pals.

Still lovin' it.

Friends all day long.

But now, I have a new pal.  Someone who can still be part of the collection of stupid iPhotos that the editorial team snaps every few days. (These photos are known as the Friday Face-Off, where we take one photo to emulate, like this one (my version) or this one, and we all recreate it ourselves, then paste them together as a college.  My favorite so far was when we all tried to look like my chubby-cheeked niece.  But I’ve once again digressed.  Ignore me.)

My new pal is decaf, and I have embraced the change.  The coffee shop downstairs makes a mean iced decaf coffee, and just a short walk away from my office is a fabulous graham cracker flavored coffee that comes in delicious decaf.  I am finally weaned off the caffeine, but I still get to enjoy the taste and the “coffee runs” that are part of the social routine in my office.

My new love.

It’s nice to feel free.

It’s also nice to not drink so much coffee that my fingertips actually jitter to the point where I can’t type a sentence without mangling most of the words.

FutureBaby, I hope you appreciate this.  Because it was HAAARD.  But I know it was worth it.

*This blog post was originally published at Six Until Me.*

Patient Perspective: The Pros And Cons Of Insulin Pumps

I wrote a quick status update on Facebook, after receiving the Solo demo in the mail and then meeting with the local Animas rep for lunch to discuss pump options. My brain was buzzing with questions.

Just a quick Facebook musing that opened up the damn flood gates for me.

And the flood gates were opened.  Lots of comments, lots of perspectives, and lots of people who had great information to share.  Turns out I’m not the only one who has been thinking about this.  🙂

I’ve been a Minimed pumper for almost six years now, and have never had an issue with Minimed customer service or the pump itself.  When my pump broke two years ago, their customer service department took my call at a few minutes before midnight and a new pump was overnighted to me.  I have no problems with the color, the size, or the functionality of my Minimed 522.

But two things happened that made me think about switching.  One was the CGM upgrade, which I tried for ten weeks and still didn’t have any semblance of success and/or comfort with.  (Thankfully, the Minimed CGM works fine for some diabetics, so it’s not just me.  Appears to be personal preference.) And the second was that I haven’t seen many changes at all in the six years I’ve been pumping with Minimed (starting with a 512 and now a 522).  The CGM component was a big one, but for people who aren’t using that feature, there isn’t much going on as far as upgrades that mattered to me.

So even though Minimed has been good to me, I’m on the prowl.

With Cozmo off the market, my options are limited.  I’ve given a lot of thought to Omnipod, and while I love the idea of no tubing, I don’t like the idea of a larger device stuck to me for the duration.  I also don’t like the idea that if I lose the PDM, I’m screwed as far as dosing my insulin.  It’s important to note that I’ve never worn an Omnipod, so I’m purely speculating.  And Omnipod works great for lots of diabetics that I know, and even some cute kiddo ones.  But it’s not about the product – more about my personal preferences.

The Solo pump demo arrived in the mail yesterday and that thing appears to have both the tubeless delivery that I’d prefer and also the ability to disconnect the bulk of the pump, but it’s not a working model and with pregnancy goals on the horizon, I’d like to make a change sooner rather than later, if possible.  Still, Solo has a lot of promise and coulda been a contenda.   Could still be one, depending on their timeframe.

I’ve looked at Animas, too.  The Ping seems to be my top contender for several reasons, but the main one is the meter doubling as a remote control for the pump.  I’ve written countless times about my desires to have the pump reasonably concealed, and when my 522 is stashed in my bra at a dressy event, reaching for it to access the buttons turns me into a female, diabetic version of Mr. Bean.  I like that the Calorie King info is stored in there.  (The Dexcom/Animas integration, whenever that happens, is also a nice future-state.)  I also like the option to take a hundredth of a unit.  Precision is a nice option.  I’m not sure how I feel about the infusion sets they use (sampling some this week) or what it might be like to use their user interface, but I want to see for myself.  Thankfully, pump reps are all about hooking us up with samples so we can see if we want to make a full transition.

But then there’s the whole money thing.  And the insurance thing.  And the “closet full of supplies” thing that will be rendered sort of useless if I switch.   And the “do I want to wrangle with a new device” thing.  There’s also the “you can always go back” thing.  And the “pumping isn’t permanent” thing.  And the “if you continue to put weird phrases in quotes, people will get annoyed” thing.

There’s a lot to consider.  And I’m excited to see what options are available to me.  But there’s only so much information I can get from “official company representatives” and websites.  If you’re a pumper, what are you using and why?  If you’re thinking about going on a pump, what factors are playing into your decision?  And if you’re like me – currently pumping but thinking about changing pump providers – what would you do?

Your feedback is, without fail, among the top resources I’ll be using to make my decision.  So thanks in advance, and power to the pumpers!!

*This blog post was originally published at Six Until Me.*

Diabetes And Getting Pregnant

I stood there with my best friend as she rubbed her pregnant belly.  The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.

And I felt oddly self-conscious with my lack of roundness.

Last Friday was my first official appointment at the Joslin pregnancy clinic.  It’s located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point.  I’m not pregnant, and we aren’t trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health.

Sigh.  This all sounds redundant, even to me.  I’ve talked the Big Talk before.  “Oooh, look at me!  I’m going to really wrangle in my numbers and have an A1C you can bounce a quarter off!”  And I’m all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in.  Like work.  And stress.  And getting to the gym.  And social stuff, like hanging out with my friends and going to RI on weekends.  Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust.  My workload piles up.  And my stress levels skyrocket.

I’m so frustrated because I want to have a career.  And I want to have a baby.  (I’d also love some tight control of my diabetes, too.)  These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself.  Slacking off is easy, and frustrating, and not healthy for me or any baby I’d like to have.

But I also realize this is one of my biggest hurdles when it comes to pregnancy planning – the whole “sticking with the pre-program.”  This becomes more and more obvious to me when I go back and re-read old blog posts where I’m so excited to get back into better control, only to be derailed by those Other Things.  So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.

“I need help being held accountable.”

They didn’t quite hear me at first.  “We can do some tweaking, and in a month or two, we can revisit your A1C and see if it’s lower and then we can give you the green light for pregnancy.”

I knew I needed more than that.  I had to be completely honest.

“Guys, I really need to be held accountable.  I know this sounds crazy and I seem very compliant, but I have trouble following through.  I’m great out of the gate, but I lose steam after a few weeks and I’m at the point where it isn’t good enough anymore.  I’m out of excuses.  And I’d really like to join the ranks of those pretty pregnant ladies out there.  Please help me?”

And they listened.  We spent the rest of the day working out a plan for me.  One that will actually make a difference.  One that will get me there.

I’ll be in Boston every three weeks until I’m pregnant.  This is a huge commitment but I need to make diabetes a priority without fail.  I want this.  I want to succeed at this more than anything else.  I’ll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together.  Chris is in charge of my meals, in that he’ll be helping me plan my day, food-wise, and he’ll be counting carbs and measuring things for me. I’ll be eating relatively similar items every day so I can manage the trends and control them.  I’ll continue to test all the live long day and wear the pump and the CGM, but I’ll actually use these devices to their fullest potential, instead of just going through the motions.

With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints.  Being sent out for three or four months is too much for me.  Obviously, because I burn out well before my follow-up appointments.  I just plain can’t pay rapt attention for that long.  But three weeks?  Can I do that?

I have to do that.

I will do that.

It's a long way down from here.

*This blog post was originally published at Six Until Me.*

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