Monday, October 31, 2011

Let's talk about type 1 diabetes...I'm growing bored with my stupid stomach issues

I'm taking a day off work today. Firstly, it's Halloween. Secondly, I still don't have my full energy and digestive capabilities to 100%. Thirdly, I have to work at a conference all next weekend. Lastly, I've accrued so much vacation that I can't accrue anymore unless I use it more often - so I may try taking every other Friday off or something like that for a little while.

Type 1 diabetes - this is the kind where injecting insulin is not optional.  About 32 years ago, some unknown trigger pulled a fast one on my immune system and tricked it into thinking my pancreatic beta-cells were foreign imperialists who should be crushed by a rebel alliance. Since my understanding of immunology is still embarrassingly slim, I'll go for the dramatic version of the story. Given I've been around smart immunologists for a couple of decades, you'd think something would have seeped in by osmosis. I guess knowledge rarely gets in that way.

I had all the classic symptoms - weight loss, excessive thirst, had to pee all the time, etc. When my friends refused to ski with me at ski club because I had to go back to the lodge and pee after every run, I finally mentioned something to my parents.  Since my hair was also falling out, I did a little research and narrowed the horrible self-diagnoses to either cancer or diabetes.  Sometimes I can't believe how dumb I was as a kid. But now that I think of my extremely sensitive and bright children I realize that even the smartest teen is still kinda dumb.

blah blah blah - a blur of tests and a stay at Good Sam in Portland at the diabetes treatment unit, and they cut me loose with my urine testing tablets, and my strict regimented diet and exercise plan. None of which I was very successful at (that sentence looks wrong, but I'll fix it when I get a publisher - hahahahaha!). But neither was I planning to let this ruin my plans for a BIG life. heh. sorta dumb again, but then again maybe this last attitude has saved me from my blundering diabetic habits.

Anyway, over the next 10 years I learned about glucose monitoring, and still struggled with controlling diabetes until my awesome endocrinologist (Dr. Hohl, probably long retired) convinced me that my perfectionistic tendencies were sabotaging my efforts and wouldn't I consider seeing a shrink friend of his who also happens to have diabetes.

Here's what I remember thinking "okay Dr. Hohl - first of all we in my family do not believe in shrinks. We either pull ourselves up by our bootstraps or just tolerate being insane and drive our loved ones into the brink of despair along the way.  Or some complex combination of that more typically." Then I thought "why do people keep accusing me of being a perfectionist? I NEVER do anything perfectly!!"

And then I thought "I don't want to make up the bG numbers in my log book anymore to appear perfect and this guy isn't fooled anyway (at 22 you do start to get a tiny bit smarter. but only a tad), and I'm so unhappy." So I gave it a try.  The guys name was Tony Something, and he did testing on me and proclaimed me to have something called "Anxiety response" and "Obsessive Compulsive Personality Disorder" which I guess is like OCD lite.  OCD lite can make you a better scientist though if you can keep the OCD Personality in check. That's what the shrink told me anyway, and I choose to believe it.  All those lists and careful double checking of everything can make your experiments much more reproducible.

My HbA1C (the portion of your hemoglobin that is glycosylated, meaning there's sugar attached to it and if you have lots more sugar in your blood than you should have then you get way more glycosylated hemoglobin than you should have) dropped from 13.9% (shockingly, scary high) to about 5.9% (brilliant figure that I aspire to someday reach again) in less than 6 months.  Dr. Hohl was so excited he wrote this funny note on my lab report with a huge smiley face and an overabundance of explanation points. Who has a doctor who does that kind of thing?  He was the best.

That experiment with the shrink taught me several valuable lessons. But the diabetes related ones were 1) my emotional well-being is tightly linked to glucose control. I don't really remember making any big drastic changes to my diet and exercise, though I'm sure I did - when you feel better you just do better things for yourself and make better choices. 2) the numbers on my glucose meter were just information to help me - they weren't 4-6 chances a day to remind myself what a crappy failure of a person I was because they weren't "good" numbers.  Although I still do a little happy dance inside when the numbers do look good for a whole day. and 3) going to a shrink, if it is a good shrink (and that's quite a caveat), is a good thing and I do not care if my family thinks I am weak for going to get some help keeping my perspective.

Sidebar on getting professional emotional support: At first I justified this with the whole "I have more to deal with so how many fucking bootstraps do I have to be pulling up all the time? Geez!"  And then there was the fact that I realized I don't want to be a crazy person.  I already have the tendencies and sometimes a crazy person does walk out of my bedroom door and into the world for a day or a week. But I always slap her silly face and tell her to "snap out of it"!  And over the years there have been a couple of tragedies and traumas that seem to have permanently changed my brain so that I need to be more vigilant about when I'm slipping down the slope.  I also gave up on the idea that anti-depressants are for weenies without any bootstraps. If your brain needs a boost to get back in working order, by all means give it some way to re-balance as quickly as possible.  If all that makes me a weaker person, well you wouldn't be able to tell by looking at me. Ha! and  remember "It's not how you feel, it's how you look.  And you look Mah-velous!"

Okay, back to diabetes. The last time I was in super tight control was during pregnancy. With Teen Wonder, I tested my bG 12 times a day and took as many injections as I had to in order to keep things as tight as possible.  My HbA1C got down to something like 4.7% - I also lost the ability to feel when I was getting hypoglycemic, so there does have to be a balance. For the past few years I've been sort of on autopilot - not doing terrible, not doing great. HbA1C range from 7.2% to as high as 8%. Right now about 7.6% I think, though I haven't been testing for several months (bad diabetic! don't do this at home!). I've been using an insulin pump for about 10 years now - it makes travel easier, and I don't have as many dangerous low blood sugars at night; however, it did not transform me into a better diabetic.

Since everything that can go wrong for anyone medically gets worse and more complicated if you have diabetes, it makes sense to attach this head on right now.  I had a great visit with the Diabetes Angel/Educator last week and she started with some simple stuff:

  • get 10 minutes of activity after every meal. I don't have a regular exercise routine at the moment and this would start something - plus doing it right after a meal is a small time commitment and will help with the glucose level spiking after eating.
  • add some protein to my breakfast. She suggested nuts, and then I said I used to do that but I was afraid they were making me fat. As soon as I said it, it sounded ridiculous - right? A few almonds on my high-fiber cereal? sheesh...I'll get to weight issues another time.
  • reconnect with my girlfriends. I am such a terrible friend! Actually I'm a good friend in many ways, but I am neglectful of nurturing those relationships. And it's not good for me.
That was really it - we talked about CGM (continuous glucose monitoring) which I started up again last week so that I can get more data to tie in with my food and the normal circadian rhythms of metabolism. I did the download of my overbusy stressful life, and cried a lot for no apparent reason other than just releasing some of that anxiety out of my body. We talked about peri-menopause and the challenge that is starting to pose with the random hormone levels which affect insulin resistence, mood, ability to tell if you are sweating due to low blood sugar or is this a hot flash? All that fun stuff.  We talked about getting more accurate carb counting incorporated into my insulin bolus decisions - so dig out those books and such...

But I'm feeling more in control already, and hopeful about hooking up with someone pragmatic and supportive who can help shepherd in my blood sugars to a goal of first 7% A1C, then if I'm not getting too many hypoglycemic episodes, we'll go for 6.5% - I guess as close to 6% as possible without having too many low blood sugars because the dangers of the lows are not worth the extra tightness in control. 

I'll have my new endocrinologist team member in December, and by then I'll have a good idea where my gaps still are - it's always nice to show up to a new doctor for the first time when you don't feel like crap. That hardly ever happens.

1 comment:

  1. amazing: you.

    Dr. Snook said it was the flu; that there was a diabetes season that followed flue season. He cried when he told us.


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