It must be nice to be a "real" Type 1. This is the thought that crosses through my head when, on day 2 of my newest infusion set/reservoir change, I need to refill my reservoir. It's what I think about when I hear people raving about their Omnipods, or I read that an insulin pump company is coming up with more ways to dose even more precise amounts so they can make pumps with smaller reservoirs.
"Well, I guess my decision is an easy one," I said to Gary a few months back when we compared the two insulin pumps that would best suit my needs. "If I can have a pump that lets me take more than 25 units at a time, that's absolutely the solution." My new Cozmo is still treating me well.
At Gary's insulin pump support group meeting last week, there was a really neat guest speaker. He was a practicing endo who also does a lot of research at UPenn. His topic of discussion was complementary therapies for type 1 diabetes, and it was very interesting. I found out that Byetta can be an effective, helpful treatment in type 1, but since it was primarily studied for people who have type 2 diabetes, it wasn't approved for people with type 1. Then, I found out a trick to not feeling like crap when you take Symlin.
The room at Gary's was packed, and everyone was very interested in Symlin and Byetta, of course, because who doesn't want to lose weight and not be hungry all the time? Then the guest brought up type 1's with insulin resistance. I was fascinated to learn that there may be a predisposition to becoming insulin resistant as a type 1 if there are a lot of Type 2's in your family history. So let's see...both of my great-grandmothers had it. My late aunt had it. My dad now has it. It felt like something of an A-Ha moment for me. (No, not THAT A-Ha...)
Cue the moment that nearly ruins the "support" part of the support group for me. Some pumpers at the meeting did not even realize there were insulin resistant type 1's. This isn't all that surprising--I don't think it's terribly common. But when our guest speaker said that there are definitely insulin resistant type 1's, and many of them have a total daily dose of 75 units a day at the very least, some people sitting near me were absolutely shocked. I guess I expected them to be surprised, but I was not prepared to hear someone say, "Oh my God" in pretty much the same tone of voice I use when I hear tragic news about someone or something.
I knew it wasn't any kind of derogatory remark directed at me, but it still stung. It hurts to know that you're just never going to be completely understood, whether it's by people who are your peers or sometimes even your doctor. It's a little disappointing to feel like a freak among people who are supposed to understand you, but I guess I shouldn't expect most type 1's to know what it's like having a 120-unit total daily dose on a good day.
If you're reading this, and somehow you're from a pharma company, please know this...not all type 1 diabetics need only a few drops of insulin to get through the day. Not everyone can buy two or three vials of insulin to get through a month. (Try 5 or 6 here.)
I plan to go back to Symlin. I was feeling pretty good when I took it before. Maybe I'll try metformin again, but I feel like there's some kind of invisible stigma in taking too many kinds of medicine. Then again, maybe too many of my friends are weird hippies who won't even take Tylenol for a headache, and I'm just feeling the silly influence.
My kudos go out to my Philly d-partner-in-crime, Kelly. We were sitting together, and when the guest speaker mentioned the insulin-resistant type 1 and how much insulin that person could take, I leaned in and whispered, "He's talking about me! That's totally me!" She looked a bit surprised, but more in a "Wow, I don't know how you do it, girl!" kind of way. Then she offered me a copy of the notes she was taking. That's a good kind of surprise.
So, type 1's out there, the next time you find yourself taking that "huge" 10-unit bolus for a high carb meal (or whatever you take, I don't want to pretend like I know since I'm no authority), count your lucky stars. Think about how you could be taking 35 units, or even more. If you lived in my body, that's the normal you'd come to accept.