What's it like to be Diabetic?

AgaMatrix, a medical devices company based in Salem, NH has inquired about life with Diabetes, and I am (as always) eager to offer what are my opinions to the following questions (Fellow PWDs, feel free to comment. Speaking as a researcher, we need to understand our market to do best by you):

+ A brutally honest assessment of all the meters on the shelves. How does the thought process work when confronted with a variety of options? Not some super cerebral analysis, but gut responses to commercial offerings. What do they think about the packages? Do they buy the claims? What are they looking for? Do they even look at the back panels? This would be fascinating.

I was a Pharmacy Technician for almost five years, and as such have handled/come into contact with soooo many meters (and their corresponding test strips, of course). The responses from all the pharmacists I worked with to patient questions were unanimous: all the meters work within a certain range of error, and this range is similar. I have used three or four different systems, and (as a patient) tend to agree.  While an Accuchek Active may spit out a “168”, an Accucheck Aviva may give a “157”, neither is “more correct” (at least we have no way of measuring that, from what I comprehend). It is for that reason that I tend to go with a meter that has the cheapest test strips (if ever I need to forgo insurance to purchase them) { leaving me with a giant & bulky meter unfortunately }. As a college student when I was diagnosed, and currently, as a (still underpaid) grad student, money talks. As much as I wish I could afford a meter that fits into a beaded clutch comfortably with all my other stuff, a meter’s not worth much if you can’t afford (or your ins. co. doesn’t cover) the test strips. As a Pharm. Tech., I was appalled at the giant difference in price between different brands of strips, which (from what I gather) all do the same thing (and how a particular ins. co. will cover one but not the other).

 I am never influenced by claims that some new meter is (supposedly) “20% more accurate” (find the *, read the fine print). As far as marketing, all are comparable as far as I can tell. Although, when I see that “106” or “108” that’s advertised as I stand in the Rx check-out in line (and likely a bit higher than that) I wonder if there ever will be a company to market a product that has a “148” on the read-out? (Although I still wouldn’t pay extra, it would be much more realistic, and would give that company a lot of D-street-cred. :))

+ Top 10 frustrations of dealing with diabetes. What are the really annoying parts of the disease? Obviously fear of hypos, fear of long term complications, but I see tons of tweets about dealing with PITA PBMs. What are the other under reported frustrations?

Ten? You want ten of them? (you got it :)):

1.       It’s officially a “disability”. When I was a student, and got T1D, some week after Dx, I got some email prompting me to attend the “Students with Disabilities” meeting (an email I promptly deleted)… I was piissseedd. Like, WTF (you know), it’s still me, I am not “Dis-abled” (no offense to anyone who considers themselves disabled, I guess it’s more the connotation).  I would like to be treated like a “normal” person, even though I have T1Ds. And I know I’m not alone here – I’ve seen other posts online about calling diabetics “disabled”. For the record: It’s a disease. Because as long as our BG is (even somewhat) in range we can do whatever-the-fuck we want.

2.       People confusing T2D with T1D. (Note: I too was guilty of this, prior to being Dx’d, even though I worked in a pharmacy).

3.       Planning exercise/Disgust for juice. That random spike in physical activity i.e. “Shit, the dog I’m sitting for just took off and I must chase her through the woods up and down hills for the next 15 minutes. NO time to think about IOB (insulin on board)… 30-60 minutes later -> must chug tons of juice to prevent imminent death (because I would rather be at 50 mg/dL than lose someone else’s dog).

4.       Depression. On a more serious note (one Kerri always brings up and I tend to agree whole-heartedly), dealing with those “common” things you mention – namely lows and highs, and fear of lows, and long-term complications is not the easiest thing in the world. Guilt is a big part of this disease – whether we’re thinking of potentially having children soon, or just about ten-twenty years from now in general.

5.       BG fluctuations due to menstrual cycle. Ladies – y’all know what I’m talking about. Case-in-point: The day I get my period, I go from a like 1:12 bolus ratio to 1:25 (only for like 1.5 days though). Nuts.

6.       The symptoms of being high (on glucose).  Enough said.

7.       Dia-Nazis (I mean well-intentioned family members). I’m sick of trying to convince family members that “I CAN eat the pie” or “It’s OK to have a beer”, or “I’m not hungry, but it has nothing to do with diabetes {it’s your awful cooking}”, or {worse} “No, I just have to pee now because everyone has to pee sometimes, I do NOT have high BG right now”.

8.       We can’t be pilots (anything else)??? (is this true, WTF?)

9.       To many doctors, numbers (like A1C) matter more than anything else (like your sanity, for instance).

10.   Sometimes, I wonder if my priorities are in the right place… Should I worry about my BG more than being sleep-deprived (2-3 AM post-restaurant rage-bolus)? Should I feel guilty when I hear about other T1Ds attaining an A1C < 6%? Should I be able to eat Chinese food once a month and let those 300s roll for 2 hrs? Should I drink as much alcohol as my (non-diabetic) friends? Should I be studying instead of blogging? Should I be having kids now, instead of 5 years from now?

+ A year in diabetes. Looking back or forward, what does the year long time frame look like? Kerri's written a lot of great posts about anecdotes, but how about managing the disease over the long term? How does control ebb and flow over the year? How do things change pre/post doctor appointments? This is a long haul disease, but one we mostly learn about through snapshots rather than long term reports.

While my D-care undoubtedly changes throughout the year, depending on my level of work, exercise, stress-level, etc., I honestly can’t look that far ahead. The most I like to think about is the week in advance. For example, tomorrow, I start my drive from OH to MA and I am sure Diabetes will throw a few curveballs during driving time & family time. (However, and more importantly, I am excited about the trip {more on long trips later J}). All we can do is be prepared, and honestly, taking it day-by-day is about the only way I can do this. More recently, I have started thinking about Diabetes on a 3-hr basis (read: default Dex. Screen), in addition to the 24 hour basis (read: NPH & bed-time snacks)…  This is nice, because (as I’m sure fellow PWDs will understand) even if you f-up for 3 hrs. (read: morning high), the next 3 are much more likely to be better if you forget that shit ever happened. Bottom line: thinking a year in advance is crazy/unrealistic IMO (unless you’re planning a pregnancy I suppose, more on that later too ;))

+ What I've tested (and why)? When was the last time they tried a new drug or a new device? What was the thought process that led them to try and why did it stick, or not? I'm always curious about the mental barriers that influence thinking and keep people from trying out new stuff or making a permanent change.

The only device I have tried in addition to just experimenting with different monitors and pens vs. syringes is the Dexcom 7+. I love it so much, I could become a spokesperson for them (REALLY, Dexcom, feel free to send me a note and we can talk). The CGMS has made a dramatic difference in my life. Case-in-point: Instead of stressing about what my BG is while I’m teaching, all I have to do is pull it out and hit a button (I never test in public, I’m just like that). I am thrilled to have it, because (when used properly) it’s been damn accurate for me (unless you push on it, rapidly changing BG,  etc., more on that later). Amazing tool to have while driving, and when going to bed heading downward, BG-wise…

Barriers – I’m reluctant to try a pump, because I hate the idea of tubing. The giant (at least compared to the CGMS) OMNIPod seems bulky and awful. If I manage to get Dexa caught on everything from bra-straps to doors to puppies, I can’t imagine dealing with potential pump-site problems. Also, there’s the sex appeal issue (which to me {and to many others, I’m sure} is very important)… I agree that healthy is sexy, but nevertheless I have a hard time feeling sexy with a bunch of devices attached to my “belt-area”. I only use the Dex on my arms, and as of right now can only see myself using a pump if it’s tubeless and tiny (like really tiny, because tiny people need tiny amounts of insulin and I’d rather change it out more frequently than have a giant thing attached to me)…

Please feel free to give feedback as comments here, or by email at walkingthedragon88@gmail.com.