Posted by: scintillatingspeck | February 22, 2009

Prediabetes. Diabetes. Some thoughts.

I had been planning to write more on this blog, until I was thrown for a loop fairly recently with scary information about my health.  Now it seems like a good moment to reflect on the past few weeks.

First, some context.  Last June, I had my blood examined and it was revealed that my fasting glucose was a bit too high: 108 to be precise.  I received a note from my doctor in the mail, which said this made him concerned that I was prediabetic, and that I should go on a diet and exercise.  And that was all it said.  No other helpful hints about how exactly to go about this diet and exercise thing.  And I was hesitant to follow up, because we had just lost our health insurance and were still figuring out how to enroll in the state plan that is required in Massachusetts.

So I started with diet.  My friend Brandt suggested that, at a minimum, I should probably consider cutting out sugar and refined grains from my diet, and this made sense to me.  So I did, and I have stuck to it ever since.  No more sugar.  No more sweets.  Nothing with white flour in it, no white potatoes, no white rice, nada.  And I also cut back dramatically on carbs in general, and bought a book called “The Insulin-Resistance Diet” which convinced me to never to eat carbs in isolation but always combine them with protein.  In the process, I have lost 30 pounds.

But this is not a triumphant story.  This is not in the vein of “I lost weight and regained my health and I feel great!  I did it!  I’m so empowered!”  No.  Sorry.  This is not one of those stories.

I changed my diet so radically and stuck to it so fervently because I was scared.  I know very well that I am at a high risk for developing diabetes.  I had gestational diabetes while I was pregnant, and despite being exceptionally compliant with the restrictive diet, and in the midst of terror that I was starving the baby, I still had to go on insulin.  Diabetes also runs in my family; my grandmother had diabetes.  I have been overweight my entire adult life.  And then the words that I was dreading to hear, after enduring gestational diabetes: that I had impaired fasting glucose.  I could all too easily envision a downward slope of ever-increasing illness and disability.

My fears were fueled by previous contact with diabetic patients.  In the early 1990s I was a nursing student for a time, and one of my patients was an older woman with diabetes.  She was blind, had both legs amputated at the knee, and was on dialysis, all as a result of diabetes.  Now, I know that many of the worst effects of diabetes can be staved off through strenuous effort and blood sugar control, but the image of this woman remains engraved on my brain.  I have known other people with diabetes as well who have avoided these complications, but of course, it is the worst-case example that my mind tends to seize upon.

So, I was driven by fear.  You must understand that it takes quite a lot of fear for me to relinquish certain foods, such as pasta, which makes me feel like I am being deprived of the comfort of my Italian heritage and identity.  You must further understand that I have a lot of issues around weight, food, and exercise.  (I don’t know a single woman in this culture who doesn’t have at least some issues around weight, food, and exercise.)  I was not interested in losing weight.  My extra weight felt like an insulating barrier between me and the world and I’m not all that pleased to feel increasingly vulnerable.  I have a history of trauma.  I don’t like receiving extra attention for losing weight.  I don’t like people praising me for losing weight when it was motivated by fear that I will develop a terrible disease.

Several weeks ago, I came across an item in the newspaper about a study at UMass focusing on prediabetes.  Participants have their blood tested and, if determined to be prediabetic, are placed into one of four groups: placebo, metformin, placebo and exercise, or metformin and exercise.   I was intrigued because I figured I would probably qualify for the study, and I like contributing to science by being a research subject, and I could have the possibility of being guided through a structured exercise regimen for free, and I could get $2o0 at the end.  So I contacted the researcher, Steve.

Eventually, after some schedule juggling, I ended up at UMass for several hours for an oral glucose tolerance test.  I felt pretty upbeat about it, figuring that either my numbers would show I was prediabetic, or even show some improvement after the months of dieting and weight loss.

I was devastated and horrified when all of the resulting numbers were solidly in the diabetic category.  I tried not to show it too much; I had to stay there until the final blood draw, and I didn’t want to fall apart, but Steve could tell that I was upset.  I cried a bit.  Steve tried to reassure me somewhat, reminding me that he couldn’t diagnose me, that I would need to follow up with my doctor.  But I could see from his face that he felt pretty bad.  He talked to me throughout that whole final hour, telling me about his mother who has diabetes, and how motivated he is to change things for people with diabetes.  He was really kind.  I held it together pretty well until the end, when Steve told me that I didn’t qualify for the study, and I wished him luck with his research, and left the building, and shakily got into my car.  And cried like crazy.

I already had my yearly physical scheduled with my doctor for a week later, but I went ahead and called his office and he arranged for me to have my bloodwork done before the appointment.  That whole week was awful.  I was sure the other shoe was going to drop and I would walk out of my doctor’s office with a big D branded on my forehead (or maybe on my pancreas?).  I felt so defeated.  I had put an enormous amount of effort into changing the way I ate and it felt like it was all for nothing, that no matter how hard I might try, I was going to end up sick and ailing and dead.  I couldn’t stand the thought of how this was going to affect Tom and Lily.  I couldn’t stand the thought of Lily growing up with an ever-weaker, ever-sicker mother, or worse, no mother at all.

Most people I confessed these thoughts to were of the opinion that I was blowing things out of proportion.  I had a few people tell me that it was nothing to worry about, that plenty of people with diabetes live a perfectly normal life.  I had to stop them and say, excuse me, but it didn’t feel perfectly normal to me when I had gestational diabetes and I had to prick my fingers four times a day and give myself insulin injections and monitor every single bite of food that went into my mouth and feel like I was being somehow encouraged to develop anorexia.  No, that didn’t feel normal at all.  Nor does it feel normal to have to worry about blindness, amputation, kidney failure, and death as outcomes of this particular disease.

I think a lot of people were so nonchalant about it because of a few factors.  First, diabetes is becoming increasingly common in the “developed” world.  It has become somehow normalized, when in reality it is a devastating chronic illness that usually gets worse over time.  Second, people have become comfortable with the idea of a ready supply of insulin.  I think it is a mistake to assume that everyone will always have access to insulin when they need it, whether because of lack of money, or because of interruptions in production or distribution. 

Looking at the larger picture of economic-environmental-energy decline, diabetes appears to me to be the ultimate disease of the Age of So-Called Prosperity.  Diabetes is often a symptom of a culture that eats too much sugar, doesn’t get enough exercise, and endures chronic stress.  Combine this with genetic predisposition, and it isn’t surprising that the numbers of diabetic diagnoses keep increasing.  Now that the Age of Prosperity is winding down, where does that leave all the people with diabetes and every other chronic illness?  Who will pay for the medications?  Where will the healthy food come from?

I believe my body was designed to function best as a hunter-gatherer who was outdoors most of the time, getting tons of exercise, eating good protein and whole foods, and not a speck of refined sugar cane or sugar beet, high fructose corn syrup, or white flour.  I believe my body was not designed to endure the levels of stress that I have endured in my life, that all of those stress hormones have taken a huge physical toll on me.  I believe that the cultural rewards for being overly intellectual came at the price of extreme discomfort with physical activity and a tendency to feel alienated from the natural world, including my physical body.  In some ways, I feel completely set up.

But back to my visit to the doctor.  I had a fasting plasma glucose done a few days prior, then came down with an awful cold and stomach bug, then dragged myself to the doctor’s office, bracing myself for the worst.  I was shocked again, this time because my fasting glucose was in the normal range, at 99.  And not only that, but the rest of my bloodwork was stellar, with my cholesterol and triglycerides looking amazing compared to how they used to be.  My doctor said he couldn’t diagnose me with diabetes based on my results, but that I should still be concerned and that in all likelihood I was kind of borderline.  He congratulated me on my dietary changes and said he was sure that they were helping, and that now I just needed to add exercise to my routine.  He told me to schedule a follow up appointment in 6 months.

It has been quite an experience to receive all of this bad news and good news all at once.  I don’t think I’m out of the woods by any means.  I don’t get to suddenly throw caution to the wind and eat pancakes with maple syrup.  (And it kills me that the season for maple syrup is fast upon us.)  I don’t get to forget for a moment that this dreaded disease still looms over me.  The good news is only that I may still have a chance to stave off the worst, that I can pull out all the stops in an effort to be as healthy as possible for as long as possible.

I can’t begin to describe how daunting it is to face the knowledge that I have to get more exercise.  Much more exercise.  How can I do this?  This is no simple task for me, in a number of ways.  First, I am pretty terrified of exercise.  Sweating and feeling like I can’t breathe have been known to give me full-blown panic attacks.  If you’ve ever had a panic attack, you know that it feels like you are going to die.  I’m pretty motivated to avoid panic attacks.  Second, there is Lily to tend to.  I could either have Tom watch her, which makes me feel guilty for constantly asking so much of him in so many ways, or bring her with me, which is difficult in winter.  The only kind of exercise I think I can get at this point is walking, because it’s free and doesn’t give me a panic attack.  (A few people suggested that I join the Y, which has child care, but we can’t afford it right now.)  If I try to walk with Lily, I pretty much either have to put her in the stroller or in the backpack carrier, and then I worry that she’s getting too cold even when I bundle her up, and I have limited options with the stroller because of all the snow and ice, and carrying her on my back inevitably leads to a lot of back pain after a while.  I know, this all sounds like a lot of excuses.  I just wanted to illustrate why exercise is so daunting for me.  In addition, I have been feeling sick for weeks, which doesn’t help.

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Responses

  1. I grock your response. When I was diagnosed with low thyroid I had a similar thought process. Albeit a much more easily managed condition than diabetes, it can go down-hill w/o meds and I seriously consider hording a few years supply and or trying some natural remedies/diet changes to see if they work…

    Also when it comes to exercise — think back to your hunter gatherer image. Your ancestors weren’t pounding it in the gym. Walking is one of the best exercises that there is for your body, mind and soul. Perhaps rather than considering it another burden to leave Lily w/Tom you might think of the burden that will be lifted from you both if you are able to walk regularly and maintain your good health.

    Hugs,

    Alison

  2. I was diagnosed with diabetes about 7 years ago. The longer you can keep it away , the better. I have bad times and good times with it. Not having the best time with the condition right now. However, my doctor told me something that might give you some encouragement in the exercise arena. When she said exercise – she means move the big muscles. You don’t have to get out of breath or move fast. ( good new for me , because about 3 years ago I found out I have asthma too) When you move the big muscles, your body uses the glucose in your system. simplest thing you can do — get a pedometer. let it count your steps for a few days and then start trying to up it. If you have stairs , walk up and down a few times.

    Like I said, I am in a less than good place with diabetes right now, but life sometimes gets in the way. Get strong, and even if you do end up with diabetes you will have the strenght to deal with it.

    never fun, but everday is easier.

    egb63.wordpress.com

  3. Jen, Thank you for sharing this. I feel I have a much better understanding of what you’re going through regarding the diabetes. I haven’t had much experience with it except for a good friend who has it and has done remarkably well with it. I’m sorry if I invalidated your experience in any way! It is a scary prospect and you are so right about the insulin. I send you all my love and light in your dance with this borderline condition. And regarding exercise I just want to say that I hate exercise for exercise’s sake! But yesterday I spent the day snow shoveling, sledding and hiking way, way up the mountain in snowshoes and got the workout of a life time (thanks Rill!). It was pure joyful exertion and not “exercise” at all. Lily would have loved being out there like that and I believe you could find a suitable way to bundle her up. I do understand, however, that Lily would likely have to be in a backpack but perhaps over time you could work up to that for your back. I guess what I’m really trying to say is that I don’t recommend “exercise”. I recommend being outside and exploring! Little bit by little bit. But I don’t want to minimize how very difficult and daunting the prospect could be. Thanks again for giving me a clearer glimpse into your struggles and how it is for you. I will think of you. A hoot to you, Lily, Tom and Ophelia!

  4. Jen, I agree that diabetes has become “normalized” when it is anything but normal. Your experience as a nursing student makes me understand your horror over the diagnosis — you have seen where diabetes can lead.

    I do want to offer one thought, though I don’t know if it will help. Whenever I am panicked about health issues and worrying, I try to remind myself that all we ever have is right now. No one knows how much time they get, or how and when this life will end for them.

    Now, does this mean one should not try to live a healthy life, for as long as possible? No. But I think Americans kind of take it for granted that we will all live a very long time. About 8 years ago, when my dad and brother and dog were all fighting cancer and my father-in-law died suddenly, it really hit me that I had been assuming this, too. Thinking about how I did not know how much time I might have really helped me clarify certain things I needed to change in my life immediately — and I have always been glad for that clarity. Just wanted to share that perspective with you.

    I can understand how you feel about your weight loss. It’s hard when something like that has so many layers to it and the outside world keeps interpreting it one way, flattening out your experience and offering you validation that is not what you want or need.

    As for exercise, I hear you! I just hate, hate, hate “going to the gym.” I like being active, and can even deal with being sweaty and out of breath (to a point). But I just hate the whole rigamarole and cost of gym exercise. Ugh.

    I agree with one of the other posters that walking is ideal. As for very cold days, how about doing some yoga indoors with Lily, using a DVD on your laptop to guide you (and Lily, if she feels like it)? I have one for beginners by Rodney Yee that I like a lot. Maybe your local library has some, or people you know that you could borrow from. I also sometimes ride a stationery bike in the house on bad-weather days; we got ours from craigslist for super cheap. The advantage to this for you would be that you could do it while still being with Tom and Lily.

    And by the way, if you worry about burdening Tom, talk to him. Maybe he would be happy to handle Lily for an extra hour if it meant you were healthier. (And you could do the same for him.)

    Constructive suggestions aside, I understand how this probably feels like one more thing to cope with when you have a lot you’re managing already. If you need someone to listen (no advice, I promise), you know you can always e-mail/call me.

    love you,

    Nancy

  5. Jen we should talk more. Typing on iPod here while snuggling a little one to sleep… So quickly, have you heard of t-tapp? I just got her workouts on DVD I’d be happy to share – the kids pretend to do them with me. I’ve just tried the 15 min one and I don’t break a sweat except just at the very end. But they are deeply refreshing. Good for thyroid, fibro, diabetes…

  6. Good luck.
    God bless you.
    Tony
    荔枝角卓越迷你倉
    香港仔時昌迷你倉

  7. Heya LL,

    Have you ever considered writing for a newspaper? Seriously. You should write a column somewhere where tons of people can listen to what you are saying. You have such a way of explaining how you feel and why and what happens in your brain. I think a lot of people could identify with you. I know I do. Think about it. You have a lot to say. And I believe people enjoy listening.

    As for exercising, good luck. The scariest part sometimes is just adding it to your routine. You think–how the heck can I possibly ADD something to an already crammed day?? Well, for me anyway, once I did add it, it was the easiest thing to keep going. Each day I have that one block of time to do my thing. It’s second-nature now. My body literally wakes up at 5:45 and says–let’s run.

    As for your super, wonderful, amazing husband, may I make a subtle suggestion? Ask Tom about taking Lily for your walk. And then when you are back and rested, offer him the same courtesy. Ask him if he would like to go for a walk.

    One of the most amazing things about you is your heart. You give. You hug. You support. You ROCK! Ok, I said it…there…my feelings are out in the open…now everyone knows…:)

    Seriously, though, I think you will manage this exercise thing really well. And then, in summer, we can all hoop together!!!


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