After the Initial Reaction… What?

There are, says my friend Karen the CDE, three types of reactions to a diagnosis of Type 2 diabetes. There are the people who want to deal with it right away; those who say they’ll make changes but come in for a follow-up appointment a month or so later and haven’t done a thing; and “those we call ‘the river in Egypt’ who say, ‘I don’t have diabetes; that’s somebody else’s blood.'”

(And yet the third group continues to show up for appointments. Go figure.)

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What type are you?

I’m a subset of the first group. When I was diagnosed nearly 26 years ago, I dealt with it right away…for about two weeks. I then scurried behind curtain No. 2 and ignored it for the next nine years.

What happened? Frustration. All I had was a long list of no-nos; a piece of paper with food exchanges; and no education. Type 2 wasn’t “real” diabetes; it was all my fault; the doctor told me I had to get this blood test every three months (an HbA1c, I later discovered) that would tell him if I had “been eating pizza ha-ha;” and all kinds of people were asking me if I “should be eating that.”

All I knew about diabetes was that you drank a lot and peed a lot and you couldn’t eat sugar. That (the thirst and urination) I learned from the recently diagnosed owner of the hang-out across the street from my college campus and my grandmother, who had to put saccharin instead of sugar on her corn flakes and in her iced tea.

I didn’t know that carbohydrates caused your blood glucose to increase. I thought the meal plans on the exchange list were for calorie control only. Who knew it was to keep my blood glucose under control? Nobody told me.

Besides, I was starving! Nobody told me high blood sugars can make you hungry: Because energy isn’t getting into your cells, your body believes you aren’t feeding it. “Eat!” it says. “You’re not feeding me enough!” So if your blood glucose is in somewhat “normal” ranges, you’re not ravenous, huh? Well, I’ll be darned!

So, I didn’t know about carbohydrates, but I did notice that there was very little fat allowed on the piece of paper with the meal plan. So for my “last supper” (“I’ll never be able to eat like this again as long as I live” sniffle, sniffle), I pigged out on fried stuff. French fries. Fried fish. Stuff like that. And lots of biscuits with butter.

Oh, I knew about the “no sugar,” too, but I’m not really a sweets person. Not even chocolate. Sometimes I get a hankering for something sweet, but my downfall is more in the potato/pasta/bread area.

However, while I was ignoring diabetes, it was not ignoring me. I had a recurring yeast infection for three years. There’s nothing like an itchy hoo-ha to (finally!) set you on the straight and narrow. Those years of ignoring diabetes probably contributed to that little patch of background retinopathy I have in each eye now. I haven’t had to shave my legs in years: Poor circulation? I can still pass the filament test on my foot…that is, I can feel nine out of 10 points.

What “saved” me? Insulin. I gave myself my first injection. A colleague who gave me a book about diabetes that taught me Type 2 is REAL diabetes. Another colleague, also Type 2, who went with me to choose my first meter. A family practice doctor who kept kicking me, although she didn’t know that much about diabetes herself. A friend who steered me to an endocrinologist. (I didn’t know what one was at the time.) Sonja, an RN, CDE, who taught me about diabetes and how to fit it into my life. Amy and Sheila, RD, CDEs, who taught me how to fit the foods I like into my meal plans and still stay in control.

That was the beginning. Later came more CDEs. Another endocrinologist (I think I’ve been going to him for about 16 years now) when my first one moved. An online chat room whose members fit my knowledge level better than the support groups in the area. I even got kicked out of one. Maybe that’s another post! Insulin-pumpers.org. Lots and lots of reading.

Getting a diagnosis of diabetes is, I believe, a form of starting over in life. There’s so much to learn, just as a child must learn. The good news is, the more you know, the easier it is to manage the diabeastie. Not that it’s perfect. But if you understand why things occur (like your blood glucose dropping when you exercise); why you need to do certain things (like count your carbohydrates), it’s easier to make the adjustments that help manage diabetes. Knowledge is very liberating!

And perhaps, as I found out, it takes a village. Where did you find yours?

  • jim snell

    Jan:

    Very interesting column. Me thinks you are beating yourself too hard on your backside.

    Good knowledge is truly liberating. There has been tons of mis-information since the 1980’s when I was initially detected as well as some new meds like metformin to arrest mis-behaving livers in the 1990’s.

    I early on cut out all snacks, sugars, and tried initially – but poorly to make the changes.

    It wasn’t till the stroke in 2007 when looking at mess of diabetes and weight gain out of sight that finally got on top of diet, exercise and liver to finally arrest the mess. All three required to get under control. A mis behaving liver can overwhelm a 1200 calorie diet and 2 miles walking by itself.

    I then went on the rampage on net looking at every bit of research and thinking to stack against all the BS over the years.

    It also turns out; one has to watch the foods being eaten like a hawk and watch all the grains, flours and glucose generation of the total eaten food.

    There may be 3 types of folks but for me it is important to stay steady on target seeking answers
    until one find those that match up and help correct ones unique and personnal situation.
    Just because no answers today; one needs to keep searching and looking and not give up early.

    In my mind type 2 diabetes is still hamstrung today by all the archaic mis-information and partially right thinking ( partially wrong as well). Until decent tools and diagnostic test packages one wears for a few days and the computers on the bridge of the Star Ship Enterprise crunches and summarizes the data for the Doctor to tune the patient; much of what is done is by guess and by golley and the latest fad looking for sole vampire killing silver bullits.

    The human body is a efficient complex chemical plant also compromised by an ancient hunter gatherer gene/digestion system optimized to prevent staravation not provide optimum energy balance and protection against excessive glucose and rot out – type 2 diabetes.

    Best wishes and good luck.

  • catgirl

    Wow, I could have been reading my own story in your first few paragraphs. My initial diagnosis was in a doctor’s office where both the doctor and nurse would scold me, it was all my fault, and to help they handed me a copy of what they thought was a food plan. It was absolutely no help, I left knowing less than when I went in, and they overprescribed my first medication. As a result, I was ALWAYS starving! I then switched to my husband’s doctor, and what a difference it made. A dietician, a nurse educator, people who really seemed to care that I was ok….

    I think we all fall into all of those categories at various times. The important thing is to land as quickly as you can in the proactive, ‘I’m paying attention now’ group. And I agree with your final thoughts – having diabetes, while not exactly my first choice, has made me do a total about-face in terms of diet and exercise that I may not have made otherwise.

  • Joani

    First response( almost 2 years ago) was surprise and I went into immediate attack mode. I am borderline type two. I completely “renovated” my diet- this sugar addict now cannot even stand the taste of it….increased my the level of my moderate exercise program and am down almost 20% in body weight…wear a size 6 instead of a 10 and will never risk my health for the sake of a dessert!