May 8, 2005

How I got here, part 1

Several bloggers have recently shared their diagnosis stories. Maybe it sounds strange to say that I’ve enjoyed these, but I have. They are what got us here, after all, and it’s important to tell them and to have them heard. To quote William Bridges as he quotes The Gospel of Thomas (in his incredibly wonderful book The Way of Transition, which I need to reread): “If you call forth that which is in you, it will save you. If you do not call forth what is in you, it will destroy you.”

So here, in honor of my preference for saving myself vs. destruction, is my story.

I had three symptoms of diabetes for a long, long time. This is a strange experience for a type 1, according to conventional wisdom. Type 1 tends to hit fast and furious, putting the recipient in need of emergency care within weeks if it isn’t diagnosed. Quite a large percentage of the medical personnel I’ve talked with aren’t aware that recent research has identified that in some adults, type 1 has a gradual onset that progresses over a period of months or even years. My diabetes probably falls into that category.

I started dropping weight, without dieting, sometime in 2002. I am 5’5” and weighed close to 130 pounds at the time. I worried about the mysterious vanishing of fat but decided that it was a symptom of depression. My dad had died not long before, and it seemed to me that my body was expressing its grief. It didn’t matter what I ate, I still slowly lost a pound or so a month. In a freaky, eating-disorder kinda way, I came to enjoy this oddity. And I didn’t go to a doctor to ask why this was happening to me.

I was seeing plenty of medical types, however, about my other problem, recurrent yeast. Ack. Talk about misery. Eventually, heavy doses of the right antibiotic got rid of it—but I had to stay on the medication religiously or it came right back. It wasn’t really gone; it was just held at bay by a constant influx of meds.

Then I got really, really hungry. All the time, this gnawing fierce need to eat. I’ve always loved food and always needed to eat at rather regular intervals to feel well. But this—well, this was something else. In the morning, at six, I had peanut butter toast and a huge bowl of yogurt. By the time I got to work at eight, I was hungry again, so I had a big bowl of bran cereal with a banana. (Gosh, I miss that.) At eleven I had lunch, followed by a giant cookie or a scone. At two I had a bag of popcorn or a candy bar. Sometimes I had another treat before supper at six. At seven I started the evening snacks. If it was salty and crunchy, I’d eat it. Oh, and I had soda, the regular kind, mixed with some kind of alcohol just about every evening. Easily 3,000 calories a day or more.

But I was still losing weight. Something was obviously very wrong, but I wasn’t used to listening to my body. I looked the other way with the determination that I now try to channel toward taking care of myself.

Then I got thirsty. You know the thirst if you’ve felt it, and if you haven’t, I hope you never will. It's a beast. I remember visiting my boyfriend—this was April 2004—and drinking my glass of water at dinner, then drinking his, then filling them both and drinking them again. And again. At his mom’s house I hid in the bathroom and drank from the faucet because I was embarrassed by how much water I kept asking for. At home, I learned the location of every fountain in downtown Minneapolis—and planned my lunchtime shopping trips based on the availability of water. I bought two gallons of orange juice a week (shudder) plus a gallon and a half of milk. I was never, ever not thirsty unless there was a liquid in my throat. It goes without saying that I spent a great deal of time in the bathroom—because, I thought, I was drinking so much liquid. I didn’t yet know that it was actually the other way around: I was so thirsty because I had to urinate constantly because my body needed to get rid of the excess of glucose in my blood.

My mom saw me that August and told me I needed to go to a doctor. I knew she was right. By the time I managed, in October, to overcome my fright and get myself there, I was in trouble. I had no recollection of what it felt like to have energy, even though I’d added a 10 a.m. power bar to the day’s food supply. I couldn’t climb stairs without losing my breath. Low-grade nausea had become a constant companion.

I was at work on the third day after my blood test, unable to stand the stress of waiting any longer for the results. I put in a call to the doctor’s office. She called back just 10 minutes later. The good news was that my thyroid was fine. The bad news was that my fasting blood glucose was 281. “That means diabetes,” she said. And directed me to another doctor who would be better able to help me.

What do you do with a piece of life-changing information like that? What does anyone do? I have fuzzy memories of calling my boyfriend, calling my mother, my boss walking into my office while I was crying on the phone. And I have a crystal-clear memory of the conviction that my life would never be the same, a conviction that hasn’t abated since.


  1. Violet,

    Stories like yours are so foreign to me. I was six and a half years old at diagnosis, and I never experienced any real "sickness." My diabetes was caught and tied at a Before-Second-Grade-School-Physical. (That is the technical term, yes.) They had me pee in the cup, it was tested, eyebrows were raised, parents were called, and Life tipped over for a small bit.

    The only indicator I had was that I started wetting the bed again at that age. I was very lucky. No weight loss. No DKA. I was just a constantly thirsty and peeing little kid. Funny thing is, there isn't a trace of diabetes in my family. Anywhere. Very strange. It wasn't until a few weeks before my Nana's death that they diagnosed her as hypoglycemic. Before that, I was completely alone. And the genetic glitch was just that.

    And you saying that you've "enjoyed" the diagnosis stories of fellow bloggers isn't strange. I have, as well. There's something very reassuring about these experiences, even if the only common denominator is the end result of becoming diabetic.

    I'm inclined to rerun a post from my old site now. Hang on...

  2. Hey Kerri. Actually, your dx story was one of those that inspired me to put this one up--I read it on your old site, but then the site went away before I could comment. (Who knew that procrastination could have such dire consequences? Oh...well...the above post would imply that I do, or should...Hmm.) Anyhow, I think a post rerun would be very appropriate. Actually, if you could republish all your old posts, I think people would have much to say about em...

    I agree that the diversity of our experience as diabetics is very interesting. We are, in the end, the same, yet also so different. I am grateful that I lived a third (speaking optimistically) of my life without diabetes. Yet I also wonder if some kids have greater resilience than some adults in their ability to adjust to a life-changing illness. I imagine this depends very much on the individual.

  3. Violet, thanks for sharing your story. To experience symptoms YEARS before diagnosis-- not knowing what you're body was doing-- must have been frightening. I'm glad you made it through to the other side, but sad that it's left you with the all-too-familiar conviction that your life will never be the same...

    I do believe you're right about kids being more resilient... I'll have to write about the hours and days AFTER Joseph's diagnosis. He was definitely handling the whole thing better than mom and dad.

    Take care,

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