Walk To Cure Diabetes--My Perspective

When Elvira was just barely six, we found out she had an autoimmune thyroid disease called Hashimoto's Thyroiditis. It's a condition that causes your own body to destroy your thyroid gland, wreaking havoc on your health. The treatment is a little tiny pill that can help replace the ever-diminishing output of your own thyroid. The annoying thing about autoimmune diseases is that they don't like to be alone. They almost always travel in pairs, which means that having one is an open invitation to any of the other 80 or so autoimmune conditions. You have no idea which one it will choose as its BFF, so symptoms for one can be overlooked while looking for symptoms of another.

When she was diagnosed (after developing significant symptoms when she was five), they started doing routine blood tests to check all sorts of levels of this and that chemical in her body. At the time, I didn't know that Type 1 diabetes was an autoimmune disease. I was more concerned about her developing Type 2, because one of the hallmarks of Hashimoto's is rapid weight gain. In September 2001, her endocrinologist gave us yet another lab slip to take to the doctor. Being the ultra-responsible mother that I am, I promptly misplaced it. It nagged at me for three weeks, until it miraculously resurfaced. I took her right in to her pediatrician, who drew several of vials of her pretty blood and sent them off to the lab. That very night, she got up repeatedly to use the bathroom. Warning bells went off in my head immediately, and the next morning, October 13, I called her doctor to see if the labs had come back. It was a Saturday, but he was in his office anyway. After putting me on hold, his nurse came back on the line and said it appeared that Elvira did indeed have diabetes, and to get her to the hospital that afternoon. She was to be admitted for three days of stabilization and observation. As it turned out, she had probably developed diabetes within that week or so, following a virus she had had earlier in the month. If I had taken her in when the doctor first gave me the lab slip, it wouldn't have shown up.

I didn't know what to say. We talked to Elvira, and tried to explain to our little eight year-old what we didn't really understand ourselves. What would this mean for her? For our family? Would she die? What would her life look like? What was going to happen to us? It was terrifying. The only person I knew at that time with diabetes was my sister's old roommate who was loony as a squirrel and constantly in the hospital with self-induced diabetic crises. The one thing I remember feeling so guilty about was all the many times she had wanted to bake cookies and I always put her off for one reason or another. With all the weight gain from the Hashimoto's, I hadn't wanted to encourage the sugar intake. Now my chance was over, I feared, and I had robbed her of the most innocent of pleasures.

Emily came down and stayed with the other kids, aged 10, 5, and 1 at the time, while we took Elvira to the hospital. They were very nice to her, but they poked a huge hole in her poor little finger to test her blood. Would this be a daily thing? How awful! She settled into her room, and thus began an impressive, and frankly intimidating, parade of specialists. In popped her endocrinologist, a diabetes educator, nutritionist, play specialist, nurses, lab techs (press 'repeat'). I hadn't even known where the pancreas was (confession: I'm still a little fuzzy on that), let alone what it did (I've got that part down better now). The finger pokes became a five times-a-day routine, sometimes more depending on the meter reading.

Part of the deal when you have a child with diabetes, is getting them to "take ownership" of the disease and learn to manage it themselves. In preparation for giving herself her first shot of insulin, our nurse (a big man with a heart of gold) let both of us practice on him with a saline-filled syringe. He kept reassuring us that he really didn't feel a thing, but neither of us believed him. It must hurt a bit, like a wasp sting or something. After drawing insulin from two separate kinds of insulin, mixing it, getting rid of the air bubbles, and wiping her stomach with an alcohol wipe, she sat there, a needle poised above her perfect skin. She was nervous and scared, and I was ready to pass out. After numerous false starts and encouragement from her nurse and me, she finally plunged the needle into her body, slowly pushed the insulin into her body, checked for back leakage from the injection site, and withdrew the needle. She assured me that it really didn't hurt, smiled, and looked relieved that it was finally over.

I don't know that I can ever fully describe to someone who wasn't present the way her look of relief and pride changed to sheer devastation when she realized that all this build-up was not for the one shot, but for the many thousands of shots she would be giving herself every day of her life after that. To see my daughter, the toughest kid I've EVER seen, shoulders hunched and shaking with sobs, will be one of the images that goes with me to the next life. She had thought that by giving herself that one shot, she was fixing the problem, that it was in her power and hers alone to slay the Diabetes Dragon. A shot with two kinds of insulin every morning, a shot before every meal, corrective doses when her body doesn't absorb the insulin at the rate the "chart" says it should, three different insulins as night--it added up to sometimes 13 shots a day, combined with the finger sticks (borrow someone's lancet/poker sometime--it really hurts!). And in the end, she still felt sick, exhausted, and constantly sick to her stomach. That was on a good day!

Not to worry, they all reassured us. A cure was right around the corner, truly it was. So much research was being done, so many encouraging developments. By the time she graduated from high school, there would be a cure available to her.

Five years ago, she got her first insulin pump. It eliminates the multiple injections, replacing it with tubing attached to a site in her stomach that she changes every three days. She still has to test her blood just as often, but the dizzying highs and lows have slowed considerably.

So how is the research going?

Well, for 2011, the budget for Type 1-specific diabetes research is $150 million, with more than 15,000 children diagnosed each year. This does not include Type 2, which affects 24 million Americans. By contrast, in 2009 the National Cancer Institute (NCI) spent $599 million on breast cancer research alone, with an estimated 209,060 new diagnoses in 2010. Now I'm not saying we should take money away from breast cancer research. I doubt I speak only for myself when I say that many women wonder if cancer is a ticking time bomb in their body, waiting to steal their life from them. I am saying, however, that a cure is truly possible with diabetes, and with more research and funding it can become a reality. If we have to take matters into our own hands, then so be it.

Which brings us to The Walk. Every chapter of the Juvenile Diabetes Research Foundation (JDRF) holds an annual walk in their community to raise money for Type 1 diabetes research. Isabelle has started her own team this year, and this post is a request for anyone reading it to join us. Walk with us, support a walker, and send us good wishes/karma/weather! There is a link on the sidebar to join our cause.

My younger daughter, Tinkerbell, was recently diagnosed with Hashimoto's. If Type 1 diabetes is in her future, I want to be able to promise her that it won't be for long.