Friday, May 18, 2012

It's just the way I am. And it isn't my fault.

Diabetes Blog Week continues.
Today's topic: "What They Should Know" - What is one thing you would tell someone that doesn't have diabetes about living with diabetes?

We can write more than one thing, which is good because the one thing I want to convey is really two things:
Diabetes isn't as bad as you think, but it's also probably harder than you think.  
Otherwise entitled "What you don't know about diabetics could fill a book..."
When I was first diagnosed 32 years ago, diabetes management was harder than it is now because we didn't have glucose monitoring, or insulin pumps, or carb counting.  I wasn't good at eating the same thing at the same time in the same portions everyday. I had different exercise and activities day to day at different times. I had either yucky glucose gel or yucky chalk tablets that were in blister packs and disintegrated in a backpack.  I had to explain to coaches and teachers about my diabetes regularly, and I didn't like the extra "attention" that diabetes brought down on my head.  I was an adolescent, which is hard anyway - so you can imagine that testing my urine (and then later my blood) and being careful about food choices was challenging, and that I rebelliously refused to acknowledge the reality of diabetes.  I just plain didn't like it or want to talk about it with people.

I still hate that people assume they know what I can and can not eat - it drives me crazy.  Or now as an adult, many people assume I can't even have a glass of wine. And they judge you when you consume something they are so sure you shouldn't.  (They really do - don't deny it. Don't we all judge others for one reason or another?)
Well guess what?  I have the same choices as every. body. else.  And like everybody else, I have to deal with the consequences of my choices. For example, if I overeat, I can take more insulin to keep my blood sugar in target range - but if I do this often I gain weight, just like everybody else. It's gotten easier over time to try and be more "boring" with food choices because it is just simpler.  So I often will forego a piece of birthday cake at work because it's just more hassle than it's worth with extra insulin bolus and testing. Not worth it sometimes for even a pretty decent Costco birthday cake (they really do have tasty cakes, FYI).  But if it is some special treat, like gelato in Venice, I will definitely make the effort.  Having a pump and carb counting have gradually freed me from the confines that I didn't "comply" with in my younger years. I have much more freedom and my choices can be better managed now.  Achieving HbA1C lower than 7 is still quite an effort for me personally because I'm just not a very perfect diabetic. I have a busy full life, which causes stress and sometimes puts diabetes management second or third in a queue of demands. I travel frequently for work, and routines are impossible to maintain on business trips. I respond too well to insulin sometimes, and my digestive inconsistencies muck up the rate that sugar hits my blood from my belly.  I am "brittle" - a term I used to loathe because I felt like it was some sort of moral or personal failing to be a brittle diabetic.

It's just the way I am. And it isn't my fault.  

(this is my  basic current set-up. I also find it irritating (literally) to have these gadgets attached to me 24 /7. I do usually hide my pump in my boobage somewhere though) A=pump B= tubing and infusion set, C= CGM sensor, D=CGM transmitter. They talk to each other, and my meter also talks to the pump to calibrate the continuous glucose monitor (CGM))
On the flip-side, diabetes management was also easier in a way in early 1980 because there weren't very many tools to use - so management wasn't a second full-time job the way it sometimes feels now. I had all these emotions about it all the time to compensate for the lack of control - fear, anger ( a lot of anger), frustration. But the mechanics of diabetes were pretty basic - take these 2 shots of insulin at these times every day, pee in a cup and test your urine 4 times a day and record the result in a 3-ring binder, . And here is your exchange diet plan and list of foods.
No sweets, set number of bread/starch exchanges, protein exchanges, etc.  "Free foods" were a big deal and they were as follows: 1) sugar free jello, 2) beef or chicken broth, and 3) diet soda (Tab or Fresca only). My folks weren't big on us drinking soda so I didn't have that a lot. I think they started buying it more to be nice to me - but it didn't taste like much of a "treat" with the saccharine aftertaste anyway.  Cookies? You may have vanilla wafers, graham crackers, or gingersnaps and only 2 (maybe it was 4 vanilla wafers...) for a starch exchange.

Simple as it was, I much prefer the complicated management routine I have today. I like to bake cookies and pie for my friends and family, I like my complicated mom-scientist-traveler-athletic-craftsy-stressful life. No, correction please. I love my life. I am blessed and lucky.

The hardest thing about diabetes and having other autoimmune issues for me gets harder as I grow older.  The impact that my health has on everyone around me mainly. I struggle with depression (common in diabetics and little wonder IMHO), low blood sugar is disorienting for me and that scares people who see me as a strong, competent, decisive person suddenly unable to make a decision.  More and more as I grow older, friends and family know of people with diabetes who've suffered amputations, heart attacks, painful neuropathies, laser eye surgeries. Painful complications and/or death before it seemed like the right time.  Our D-lifespans are statistically shorter than "normal" people. I know for a fact that the people who love me and care about me worry about me, and that makes me unspeakably sad. I want people to be happier when they know me and think of me.  I want them to smile at my silliness, or idiosyncrasies, or just because they like being around me - not worried sick that my kidneys will fail, my stomach freak-outs will land me in a bad place (not all diabetes related, but gastroparesis is a big factor), or that a low blood sugar will send me into another bad place.  I've never passed out, or convulsed due to low bG - but I am way disoriented and blabbering when it happens. and pale and sweaty.  I'm sure it is almost as scary to see as it is to experience.

Despite all this, I want people to know that it is in fact much scarier for me - the one who can't think straight and is totally dependent on getting my glucose in and the people I might need to assist. The one who has to get constant check-ups and wonder every time if this is the time I'll have to take another drug, or get eye laser surgery, or start dialysis, or on and on and on.  Please don't get mad at me. I'm not doing this on purpose. I'm not a careless person who doesn't take care of herself.

It's just the way I am. And it isn't my fault.

I could probably fill a book with more on this topic, but I don't really want to.  I like dealing with diabetes with a sense of humor and living my life in the fullest way possible despite having diabetes.  And that's probably a better book.
But I need to give it more thought...

*Blue was negative for spilled sugar (over your renal threshold which varies from person to person), and there was a scale of color through the greens and yellows up to orange which was something like +5 high sugar.  I very seldom hit the blue after my first year (a "honeymoon" period where my body still made a little insulin).

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