Monday, August 18, 2014

Dear Fellow PWD

Dear Person With Diabetes,

I am you. I have lived with this disease for almost 16 years..I have highs, I have lows. I know that this struggle is very,very real. I hate it,as you do. I know that it doesn't lend itself to "control." But I need to tell you something, the rest of America seems to be a bit confused on all things diabetes.
(No, insurance does not always cover "necessities." Grrrrr.)
We, the people who actually sometimes give a darn,know things. We know that strips can be wildly inaccurate, we know that it's entirely possible to go from 80 to 30 in less then 15 minutes, we know Your Diabetes May Vary. We know the glycemic index of various foods, we have a running IOB number board in our brain & we know that diabetes rarely,if ever, makes sense. We know that exercise can send you high or low and that sugar saves lives. We know that you can follow all the rules,live in perfect A1c Land,& still develop complications.And since we know all these things,you'd think that health care providers would be simerally informed, right?

Nope. Most of the people in this world(& this includes HCP) don't know jack sprat about either type of diabetes. And while that's to be expected of Joe Public,it's really not saying much for those people who should know. A long time ago, I had a bad hypo & my parents wanted to know why. Nobody could give them that answer,& so it was that the "why" became "my fault." It was on that day that I discovered that doctors don't know everything,and expecting them to fix everything just ain't gonna happen. A little piece of your soul dies that day,the day that you discover it truelly is your gig,and it's never going to be perfect. So,perfect. What does that even look like?I think so many doctors and nurses paint an unrealistic picture of that..if you take insulin and eat carbs,there will be highs and lows and expecting anyone to manage that on 3 test strips a day is just plain idiotic. I want to tell you to be your own best advocate and FIGHT for what you deserve, but realize the universe is out to make that very difficult. From nurses who don't understand diabetes at all to the server who gives you sweet tea, not diet, none of this is going to be easy. But this much I promise you, you are not alone. Join a Facebook diabetes group. Get a good pumping book, get a CGM,get a consultation with a CDE. Ask. Absorb. Learn.

     We are here for each other.