February 22, 2014

Type 2 diabetes, I'm Confused.

A good friend said to me, "I don't get where you are with your diabetes. I have heard you say you are type 2, pre type 2 and I am confused."

Exactly. 

I am confused. 

I think that puts me right smack into the middle of the type 2 universe. Confused.

Years ago, at a physical, the GP told me my blood sugar was elevated. Fasting sugar were 108. I laughed. I would kill for my kids fasting blood sugars to be 108. As we talked the Doc said, "You probably know more about diabetes, with two T1D kids, than I do." Maybe,  I probably do know more about living with kids who have type 1 than he does but that isn't what we were talking about. I was confused.

So we talked more.  He referred me to an endocrinologist. It took six months to get in. If this was remotely serious, why the hell does it a half a year to get an appointment? And how do you stay motivated to take action in that half year? Confused. 

The endo was a nice guy. While I was there as much to interview him about being an adult endo for when my kids when they leave Children's Hospital of Philadelphia, as for myself, we talked about my health. We talked about my family history with type 2, that I had come down from 200 to 180 pounds through diet modification, mostly small actions. I told him what my fasting sugars were (hey there are meters all over our house, I was curious.) He said stay the course on diet and work to loose a few more pounds. He said he didn't need any more blood work to know I had type 2 but I didn't need to test fasting blood levels. So keep being good, just a little more of the same, don't test the morning blood sugars, and oh, you are type 2. Confusing.

Since then, I have periodically checked my morning glucose. I became obsessed getting a masters degree in health communication. I ate much better when I was in a nutrition class as part of that program. Much of the nutrition class didn't stick but the idea of looking at meals as a plate did. I try for at least a half plate of green stuff and no more than a quarter of protein. I can do that. But since then I've exercised less and obsessed more as I try to be useful with that degree. Not to long ago I wore a continuous glucose sensor for a week. From it, I know, if I was type 1, I would give myself a larger meal insulin bolus to manage long, slow recovering, post meal spikes.  I have read up on T2D drugs, some I understand, some I don't, some have side effects like weight gain that make it hard to feel successful at controlling health. My numbers are creeping back up. I think, while not perfect, I was more or less successful at what the endo wanted me to do a few years ago.  Yet, I find it really hard, no - almost impossible, to give myself any credit for that success. All I see are the numbers coming back up and feel guilty about and the occasional stress induced Oreo binge.

Yesterday in a meeting, I stared at a muffin off and on all day. I wanted it in all kinds of ways. In the end I didn't eat it. I had a half a plate of green, a little protein for lunch and wanted the muffin. I need help staying successful, not perfect. It's time to do more, more activity, that 'in nutrition class' attention to diet, some kind of meds and mostly I need peers to help take the next steps to be successful. I know this about diabetes - I need help, not to try to go it alone. I'll go back and see the Docs, maybe an educator and be more open with peers.

Maybe I am not so confused.

Thanks for asking. 




7 comments :

  1. Oh Bennet, you are so not alone. I bet that most people who have type 2 are right there with you. Heck, I'm confused more often than not, it seems, and I was dxd nearly 9 years ago! Some things I've learned recently: carb reduction trumps added exercise for controlling bgs but added exercise is essential for improving your overall health, including bg control. I'm currently dealing with progression and am completely confused about which way to jump when deciding what medicine to add. I see my doc this week.

    Hang in there, and never hesitate to ask any of us questions. You know who we are.

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  2. In that "numbers are creeping up" area, too. Only I get so frustrated when I start exercising and start getting better with carbs, and they don't come down like they used to, so I freak out and just stop. (Next month = 9 years).

    By the way, I didn't realize how much blogging and being active in DOC helped me - re: peers. Since reactivating a few weeks ago, it's at least helped motivation to exercise and stick (mostly) to diet. So yeah, as Kate said, there are a few of us, at least.

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  3. You're not alone and thank you so much for writing this post!
    I give you a hell of a lot of credit for doing and for wanting to do more - please do the same!
    And hang in there!
    Xoxo

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  4. I'm a insulin dependent T2, and it's confusing as all get out. That's a small part of the reason I'm on insulin. T2's are expected to eat less, exercise more, lose weight when the insulin resistance causes weight gain, and have numbers as good or better than T1 with less than a third of the tools.

    If your endo doesn't want you testing at least twice a day at a T2, get a new endo. Do not be surprised if you end up with a different endo than your kids do, as some work more with T1 & some work more with T2. Ask for appointments with a DE and a Nutritionist, just as you would if you were diagnosed with T1. There are more meds on the market today for T2 than there were when I was diagnosed 9 years ago, and if you & your medical team feel it's appropriate, then try one of two or several. If they don't work well for you,(I couldn't tolerate them,) ask for insulin.

    T2 is as much as a moving target as T1. You've got a head start in your strong bonds in the DOC, and in your knowledge of T1. But there isn't as much overlap in the medical community as there should be.

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  5. In all fairness to the endo, that was a few years ago and it was the right advice at the time not to test daily. The information form them was not actionable on daily basis. It is moving that way now and I need be successful in the next step of the process.

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  6. In all fairness to the endo, that was a few years ago and it was the right advice at the time not to test daily. The information form them was not actionable on daily basis. It is moving that way now and I need be successful in the next step of the process.

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  7. I believe (although I have zero evidence to substantiate my belief) that's a major issue. The wait to see an endo is awful. So, too, is the fact that many general practitioners (a.k.a. "family doctors") are woefully out-of-date when it comes to diabetes of any type. Of course, confusion also impacts many people who turn to the medical profession for help.

    I do think that as a community, type 1 has dominated the online space, and that stemmed from living with an invisible disease (whether our own or that of our children), which is why many of the early bloggers bonded. Today, I see signs of progress to trying to expand the reach to be more inclusive of the type 2 space, but there's so much more to be done. Although blogging as such isn't the engine it once was (thanks, Google, for killing Google Reader and thanks to Facebook and Twitter for abandoning open API's so they own everything), but there is clearly space to expand the arena.

    Cherise is doing some things in this space that opens the door to more inclusion, but we also need some type 2 specific content, and some the medical profession's lack of enthusiasm combined with continued, baseless "warnings" about the benefits of online communities hasn't helped. But your work with the FDA is a template which I strongly suspect other disease communities will emulate.

    You are a pioneer in some respects, my friend, but I think it all goes to a place where patients will have a bigger role not only in terms of support, but in terms of setting priorities for our own needs. That's huge!

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