Yesterday was a day of raised voices in the diabetes online community
. I'm still really bummed out that I missed it. But I'm here today and I'm here to tell you some of the ways my Type I diabetes affects my life that might not be obvious to an outside observer.
I'm sure you can all imagine that having diabetes can take a toll on my body, that it has physical ramifications. But do you know what some of them are? For example, did you know that every time I get high blood sugar, I feel thick and slow and nauseous for hours? That I sometimes can't eat after a high because I am so queasy? Or after a low, I get a huge migraine and sometimes chills, both of which can last for up to a day? And since the only way to really cure the migraine is to get some sleep, and I can't do much of that ever since I gave birth almost two years ago...I almost always feel vaguely achey and especially headachey. I don't bounce back from illness and general malaise as quickly as I could, because my body is tired out from walking the tightrope of diabetes control.
Along with the immediate physical toll of high and low blood sugars, there's the physical-mental connection I have to worry about. For example, when I check my blood sugar and see a high number, not only do I physically feel bad in the moment, I also worry about the future. Will I lose my sight someday because I didn't manage to keep my blood sugar in range today? What about the feeling in my feet? Is this weird bump I've recently developed on my foot something that my diabetes caused? Is it something I caused by not being careful enough with my blood sugars and/or my foot care?
You can see how this diabetes thing carries some pretty good mental and emotional weight. There's the guilt, and the worry, and they're constantly with you. There's even guilt over having a child--am I somehow dooming him with my bad genes? Will he have to suffer this disease as I do? Will he have to go through the loss of a parent at an earlier age than most? Will he suffer simply because of the burden of my disease, because I'm too tired from my highs and lows to properly care for him at some point? Or because I AM low and can't think clearly? The list goes on and on. But I have to say...at least I CAN have children. At least, if I do manage to stay in control of my diabetes, I believe I have a good chance of living a normally long and healthy life. At least it's not so much of a death sentence as it was only decades ago. So I thank heaven for technology and medicine, even though they can be a curse as well as a blessing at times.
But then I start thinking about things like the state of the economy, with countries already having riots because of the price of food. I think about what would happen if war came inside our borders, or if there was a natural disaster where we lived, or an epidemic. What would I do? How long could I last? When would my supply of insulin run out? How could I live? These are the questions that truly haunt me.
There's another costly aspect of diabetes, and that's the one that affects our bank account
. My test strips cost about $1 EACH, and I test, on average, 8-10 times a day. Sometimes I have to use two test strips for one blood sugar reading--which is sometimes user error, and sometimes not, but is always FRUSTRATING!
I take two kinds of insulin, one of which costs about $125 a vial and one about $200, and I use slightly more than one vial a month. I have to buy syringes to take my insulin, lancets to prick my fingers. I have to visit the doctor more often than I imagine the average non-diabetic does, plus have blood drawn every 3 months, and pay for a specialist, the endocrinologist who helps me manage this condition.
Thank goodness for health care, which does help out considerably with SOME of these items. (For example, the test strips end up costing $25 a month instead of...well, you do the math.) But do you know how much my insurance costs? I'll give you a clue. It's not QUITE as much as it would be if I was, say, 65. But it's way more than we can actually afford. And it doesn't cover everything--the glasses I'm wearing are the same ones that got broken a year and a half ago. And we taped them. That's right, I wear taped glasses because I have no insurance to cover new ones.
The point is, it all adds up in ways that outsiders don't know. Our monthly medical bill is a huge proportion of our monthly income. And that is something we will always have to consider. Which leads back to the emotional strain this disease carries with it, day in and day out. There is no cure for diabetes, yet, but there is also no vacation, no break, not a single day that I don't have to consider all of these issues. And that is one of the hardest aspects of this disease, its constant presence, and the need for constant vigilance.
We need a cure. Today!P.S. That first link up there will take you to a long list of wonderful blog posts of diabetic voice-raising. Here, here, here and here are four of my favorites for non-diabetics to read. The first has some good general information concerning Type I diabetes; the second two are admirably articulate pieces on life with diabetes. The fourth is a powerful call to action about the true cost of diabetes. Enjoy!