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.

"Disclaimer"

Not sure if I should have one of these for a (semi)-anonymous blog, but here goes:

Nothing posted here is medical advice - just my personal experience. I am not encouraging anyone to try anything I may post here. 

T1D: Reaching Out

How about a short-and-sweet post to contrast with that first super-lengthy one?

For several years after starting treatment, I was soooo determined to not let Diabetes rule my life (at all). To this day, I seldom tell strangers or new friends about my diagnosis - usually it comes as a shock after months of knowing me. The reason was - for a long time - the ignorance most people have towards this disease, and the constant explanations of: "no, I know I am only twenty, and I know I am not fat, but yes, I am diabetic - it's type I, actually" (proceed to explain the difference in depth, listen to pity comments, get a little pissed off sometimes...)

Instead I chose to let people in on this fun fact of my life after they have already formed their opinion of me.... Lately, however, and especially after discovering sixuntilme.com as well as numerous other blogs by PWDs, I have been talking about it non-stop to a bunch of people. I must have told more friends/coworkers/acquaintances about it in the last 2 months than I have in the last 6 years. And I am proud of it...

In person, I have only met 3 T1Ds! Online, this community has given me such hope/support, and I hope to meet many more of you - online and in person! So please feel free to email me and connect =)

T1D: Coming Out

When I was 18 years old, I went in for a check-up at University Health Services. A few days after my appointment, my blood-work came back. I was on the train when I listened to the VoiceMail. “You blood sugar was elevated – 256 – quite high actually. I’m sending out to get another test and will get back to you.” A few days later in her office…. “Your A1C results came back and it was 8.8%. That’s a measure of your average blood glucose over the course of three months. You don’t have ketones, but you’re spilling sugar in your urine. This looks like Type I Diabetes to me. I am referring you to a specialist at Joslin Diabetes Center, please make the appointment.”

What came next was kind of a blur. I remember crying, and thinking “I can’t have Diabetes, this is a joke.”  As many people, at the time, I was not well-educated about Diabetes (even something as simple as the different types). Having met and worked with very many type II Diabetics at work as a pharm. tech, I always had the stereotypical picture of an overweight, older person in my mind (yes, TIIs, I know it’s a stereotype, and I am sorry). So how could I – an 18 year old college student, at my 120 lbs. have this disease? My family didn’t help – they were just as uneducated and were assuring me that if I just went on a diet and exercised more , my “Diabetes” would go away. Regardless of how WRONG I know that was now, I was more apt to believe in that theory than even beginning to accept that for (likely) the rest of my life, I would have to inject (to me injecting seemed scary as hell and to be avoided at all costs) myself with insulin. My mom’s even more uneducated “insulin will make you gain weight” statement didn’t help that… The physician at Joslin sucked. She did not care at all, leaving me in tears, and no closer to wanting to accept this diagnosis or seek treatment. My C-peptide levels were still normal, which lead to me convincing myself that this was all a mistake, and to ignore this, as it would all go back to normal…

Of course that’s not how it turned out. But it was another 18 months before my first shot of Humulin R… About six months after diagnosis, the symptoms came at me with a vengeance. I will not go into much detail here, as I’m sure you’re all familiar – non-stop thirst and urination, pronounced weight loss, fatigue, depression, DKA, DKA, DKA. I remember feeling like I was going to just fucking drop dead if I didn’t chug that bottle of water. Five minutes later, I would need another…

As I sat in my biochemistry class (getting up to pee at least twice during the 1-hr lecture), we learned about metabolism on the molecular level, and discussed common metabolic disorders like T1D in great detail. It was then and there that I knew – I definitely had T1D, and all those myths I’d been hearing about from my family and other non-Med folks was just that - uneducated banter.  After some point, I think that everyone I knew that cared about me were just working to get me out of denial and into treatment – my mom, my teachers, my doctors…

Finally on April 18, 2008, two days after my 20^th birthday, I checked myself into Mass General Hospital. This occurred after I went into University Health Services to treat a respiratory infection, and they basically told me that giving out an Albuterol inhaler and a Z-Pack to someone with a blood glucose level of over 600 was a huge liability. They got my PCP on the phone and he pleaded with me to go to the ER. I obliged. I knew that this was over, and if I didn’t deal with it now, I would die. Although at that time, I would have taken death over the life I was living anyway. I weighed in at a scary 96 lbs.

Once in the hospital, I was ready to face it all. It was pretty bad: the DKA. My A1C was “over 18%” (:0).

I was there for two days, while the physicians ran test after test to make sure I was/would be OK. I was (and AM) OK. I told myself quietly in my head - “this will take 10 minutes out of your day (tests and injections {haha, I was quite naïve, no?}). You will take care of this and you will feel better. Accept this. Because nothing can be as horrible as the last year. And you will live a full, independent, free, and happy life. {all true}”… Walking out of the hospital two days later on 4/20, I felt as free as I had even felt. My vision wasn’t blurry, I wasn’t thirsty, and I didn’t have to pee. Best of all, I could actually enjoy food again. And on the long train rides to Quincy – I didn’t have to pee.

The injections became less scary and became a good habit – like washing your hands.  A few weeks later my A1C was 10%. Another two months and it was 6.8%. I remember my first low (42, more on that later). Coming out: (all my A1Cs since: 6.9%, 6.3% (2008-2009) – carefree undergrad years =); 8.3%, 7.6%, 7.6%, 7.8%, 7.1% (2010-2013)). Looking back, I probably had more lows in that first few years of treatment than I can expect to have during pregnancy (based on what I’ve read anyway). Today, I test more than ever and have recently started using the Dexcom Seven+ (I love it!). I haven’t had a BG of under 70 for at least 6 months and I see the 300s about once (OK, maybe twice) a month. I know I can do better – hearing (reading) from all of you other T1Ds out there has made me more motivated than ever!

Diabetes certainly presents its challenges. After undergrad, I spent a year in Spain. It was stressful and I lacked strips. When I came back to the states: 8.3%. Graduate school is also stressful. Life is a big balancing act and T1D certainly doesn’t make it less so. Nevertheless, I still believe that it’s (almost?) as much of a blessing as a burden. It has definitely made me much more motivated (and much less stupid) in many ways.

I hope this reaches someone who is/was in a similar place as I once was, because as I have recently learned from the online diabetic community – you are not alone.