Friday, June 13, 2008

Count Your Lucky Stars.

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.

10 comments:

  1. Hannah, I know exactly how you feel. When people complain about 40 to 50 units a day being a lot, I always feel like such an outsider. I use about 90-100 per day and those low TDD's amaze me... I know that some of my increased insulin need has to do with being a teenager, but a lot of it is resistance. When I was about 9 a doctor even put me on Metformin for a short time because she said my diabetes had Type 2 qualities (resistance). It's not surprising that there is a link with having lots of Type 2's in the family, mine has quite a few as well. You are not alone!

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  2. It must be a regional thing, Hannah. Up here, when I talk about a TDD averaging at 28-30 units... I get - "that CAN'T be true... I take (insert much larger # here - 70/90/120/150) - you can't take just that much..." Well, I can, and I do. This is almost always the reaction I get up here in the Northeast. Kerri is the only other D person I know that takes as little insulin as I do. And when I say that my insulin sensitivity varies from day to day (read: one day 1 unit will drop me 75 mg/dl, the next 1 unit will drop me 125 mg/dl, and another day it might be 50 mg/dl - and it's never consistent - and never lines up day to day.)

    I have a ton of type 2s in my family. So, as you know, I've worked on weight loss and cholesterol control, along with thyroid control over the past year - because I know that down the line, these could all become factors in my insulin sensitivity/resistance changing.

    All we can do is keep on keeping on - and know that our brothers and sisters in diabetes all live with their own challenges; their own things that make them feel like the square peg trying to squeeze into the round hole. And I know, I always take comfort in knowing that anyone who has diabetes can understand that diabetes is such an individual illness - no two people's lives with it are the same...

    Ugh. I am glad you got some notes. And I hope you take heart in knowing that I'm a person that always tell people who ask me about insulin dosing - "I never think about how much or little I take - and neither should you. You should think of your dose as just another tool that you're fine-tuning constantly that makes you healthier and better in the end..."

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  3. Jillian--I'm glad you know right where I'm coming from. I remember how my insulin needs went up in my teen years, but now I'm 26 and I feel like they're still growing.

    Nicole--Thanks for the excellent input. To each his or her own, I suppose. Now if only a room of 25 to 30 people with Type 1 and insulin pumps could fully understand that! :)

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  4. Thanks for a very educational post. I'm a type 1 who didn't know some of us also have insulin resistance. My reaction is that I wish I knew more, like is it something that every type 1 has a chance of developing, and perhaps we are more predisposed than "healthy people"? Sort of like developing type 2 ON TOP of already having type 1? I'm shocked that, as you say, there is not more research on this topic.

    Thanks again. I love the blog, you have a knack for both making me laugh and educating me!

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  5. Hannah-
    Excellent Post!
    I'm glad I was at Gary's meeting to learn and to share in your "A-Ha moment." I'm also very thankful that I didn't offend you.
    I've always respected you Hannah McD, but damn, now I am in awe of you - GO GIRL!
    I think most of us in the meeting were just shocked such a thing existed. Then when u throw in the whole Byetta and C-Peptide section of the talk, it was a lot to take in.

    Nicole is ABSOLUTELY right.
    Don't compare anyone's insulin intake to your own.
    There is no such thing as text-book diabetes, and each of us has our own unique quirks with the big D.

    Your getting a grip on your D and doing what needs to be done.

    Your being proactive, arming yourself with info and education (symlin, etc) and utilizing Gary as your own personal Diabetes mechanic.
    Your customizing your "internal instruments" and will cntinue to feel better & more empowered in the process.
    I'll give u my notes (typed - no need to read my chicken scratch) at lunch next Saturday.

    Continue to ROCK!
    k2

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  6. Hannah, I've been reading your blog for a while and knew that you had resistance issues but didn't realize how much you had to take. I hate that you have to deal with that, being diabetic alone is certainly enough for one person!! What was the trick to not feeling like crap on Symlin?

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  7. Just another example of how we are all so individual with our diabetes management.

    And yes, when you're up to it please do share your tip about taking Symlin (and heck, anything else you got from the talk (or Kelly's notes!))

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  8. I am RIGHT THERE WITH YOU!!

    I easily take 150-200 units per day. Yes that right, my daily swing can be more than what most people take.

    Sigh....

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  9. i use about 80-100 units a day. almost everyone on my dad's side of the family has type 2. this is very interesting.
    i would also like to hear your trick for not feeling crappy with symiln.

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  10. Hey Hannah,
    I read your blog, but have never commented before. My daughter is 8 and T1 since age 6. Sh euses a lot of insulin for her age - about 30-35 units a day. Sometimes I don't even want to tell other parents, who look like they saw a ghost when I do tell them, then they respond, but My child only uses about 10-11 units a day. It also makes my heart sink. But, it is what it is, I say. She needs what she needs - 35-40-120, whatever, she is here and alive. Enough said.
    We just started using Gary and I can't say enough about him and his understanding of kids with T1. He has been an invaluable resource to my team for my daughter. It helps that we live about 10 minutes away from his office too. I am wondering if as a parent of a pumper I can go to the pump support meeting. I will have to ask, I would love to have some support in this!
    Great post and very well said. You are here, you are alive, you use what insulin you use and the others be damned. Enough said my dear.

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