Everyone lives with — and copes with — diabetes in their own unique way. But some of us are more unique than others? No, that’s not the point. Today, a perspective from yet another kindred spirit, Hannah McDonald, a self-proclaimed nerd who lives in Pennsylvania and has been blogging about the Big D since 2008:
A Guest Post by Hannah McDonald, of Dorkabetic
You may have found my blog before, or you may be seeing my face (or my words) for the first time. I’ve had type 1 diabetes for just about 20 years now, which is long enough for me to know that every person with diabetes is different. We have different types. We take different medications. We all eat differently, treat our lows differently, and have different attitudes about self-management. I think all smart PWDs know that diabetes has its own little quirks and nuances for every individual. Yet, for some reason, this does not stop our fellow d-folks from opening their mouths in unwise ways.
I was attending a quarterly support group for adult type 1′s in the greater Philadelphia area, and the discussion turned to how many units of insulin a particular individual was using to cover his food. Another meeting participant chirped that that amount was, “a LOT of insulin” and seemed very concerned. The thing is, the amount this person was bolusing for carbs was exponentially smaller than the amount of insulin I take to cover carbs. The conversation between these two individuals then branched off into questions of “What’s your total daily dose?“ Other people in the meeting seemed shocked to hear that someone was taking upwards of 60 units of insulin a day. I tried my best not to look embarrassed and uncomfortable. This was a support group after all, and here many of us were, passing judgment on other PWDs just because of their insulin doses.
Well, here’s the real scoop: what you might call a lot of insulin might just be what I call the amount of insulin that keeps me healthy. My ratios are not yet perfect. My control is not yet perfect, and I am always working on it. Yet everyone seems so eager to judge total daily doses of high double-digits. Your jaw might drop if you actually knew my total daily dosage, my insulin-to-carb ratio, or my correction bolus figures. I will keep those to myself. What I cannot keep to myself sometimes is my frustration with insulin pump manufacturers.
This seemed to be a good topic to bring up considering the FDA-approval of Medtronic’s newest system, the Revel. While I am currently pumping with a Deltec Cozmo, which I adore, I know this little fella won’t be around forever, and in a couple of short years, if not sooner, it will be time for another pump upgrade.
At this rate, I will be switching back to Medtronic Minimed. I know this for a
fact. Why? Because other systems’ reservoirs can hold less than 300 mL. For someone who already needs a reservoir refill before the requisite 3-day site change, it just sounds like a massive pain in my non-functioning pancreas to deal with 200 mL or less. I can barely even consider a patch pump (I blogged about that last year).
I have no real issues with Medtronic. Their customer service always treated me well when I had the Paradigm 722. Their products were suitable enough. Purple has always been my favorite color, though I had the clear pump — I thought it looked futuristic in 2003, you know, for a medical device.
Yet small frustrations led me to choose another pump company. The Deltec Cozmo (RIP Smiths Medical Diabetes Division) offered me a bolus that capped at 75 units, instead of 25 or 30, like most other pumps. I found myself going sky-high post-meals on the Paradigm because I would simply bolus the max amount of units, and then forget to add any remaining units I needed for that particular meal. My insulin-carb ratio actually snuck in at a tiny fraction under the Paradigm’s previous minimum. But now, according to their Revel FAQ page, as well as the press release, bolus ratios of 1:1are possible for tighter type 2 control. I am hoping this also means higher numbers for those max boluses.
Sometimes we type 1′s are insulin resistant, and instead of making us feel confused and even ashamed by this fact, questioning whether we have “double diabetes,” how about you help us out instead, insulin pump manufacturers?
Being able to adjust our doses and daily insulin intake by tiny fractions of a unit is of course, a monumentally huge capability. Intensely accurate dosing is vital to everyone’s diabetes management. I just wish I could stop feeling like the people who make insulin pumps are leaving some of us in the dust when it comes to dosing. I wish total daily doses were not something involving my insurance company; I’ve had to ask my endo to issue letters to the pharmacy stating that YES, all that insulin was for me.
Call my daily dose a lot of insulin. I dare you. My endocrinologist, my diabetes educator, and the real folks making up my care team do not make me feel ashamed for taking a higher daily dose. I call it what I need to survive. I call it essential.
And I call upon the folks who make devices that deliver it to make sure it will be delivered well for every person with diabetes.
Amen, Hannah! We may be a niche market, but our needs are vital to life.