Journalist? Diabetic? Potential hot-air balloon enthusiast? Miriam E. Tucker has been a type 1 diabetic since 1973. A full-time medical reporter by day, she covers diabetes news for doctors. Her fantastic freelance work has been featured in The Washington Post, The Boston Globe, and Diabetes Forecast magazine. Miriam agreed to subject herself to a handful of questions. (Brave girl.)
Kerri: When were you diagnosed with diabetes? What were the circumstances?
Miriam E. Tucker: September 1973. I was 9 years old, and was just about to enter 4th grade. My parents had decided to take me out of the private religious school I had been attending since kindergarten and switch me to the neighborhood public school, where I knew nobody. I was absolutely terrified, and I’m convinced that the anxiety I’d been feeling all that summer is what brought my diabetes on at that point in time.
I had all the typical symptoms: Intense thirst, frequent urination, blurred vision, and weight loss. My mother, who had just read an article about diabetes in the newspaper a week earlier, called my pediatrician and said “I think Miriam has diabetes.” He said he doubted it, but advised her to go to the drugstore and buy some urine test strips. They turned colors, and I was admitted to the hospital on Labor Day. I missed the whole first week of school.
But, I was lucky in one sense: If you have to get diabetes as a kid, there’s no better place to be than Children’s Hospital of Pittsburgh. It was—and still is—one of the leading research and treatment centers for type 1 diabetes in the world.
Kerri: What are the biggest advancements in diabetes management, in your opinion?
Miriam: In my lifetime, #1 has to be blood glucose testing. When I started out in the 1970’s, I tested my urine with a mini-chemistry set that included a dropper, a test-tube, and foil-wrapped pills. I’d put in 2 drops of urine and 10 drops of water, then drop in the pill. It would fizzle up and turn colors, from blue to green to bright orange. When it stopped, I’d shake it—being careful not to spill or touch the bottom, ‘cause it was burning hot—and compare it with a color chart on the wall.
Blue was “negative,” meaning that my blood sugar could have been anywhere from 0 to around 200. Orange was “4 plus 5.” No clue what those numbers meant, but I did know that it meant my sugar was really high, perhaps corresponding to a blood sugar of anywhere from 250 to infinity. But of course, since it takes several hours for sugar to go from blood through kidneys and out, those values were completely irrelevant to what was happening in my body at the present moment anyway.
Blood sugar testing today is still no picnic, but at least you’re not in danger of scalding yourself…and it actually gives you useful information!
For me, #2 would be the new insulin analogs—both the short-acting ones like Humalog and Novolog, and the long-acting Lantus and Levemir. Thanks to those, I can manage my diabetes with a flexible basal/bolus regimen just like the pumpers do, without having to wear the gadgetry. (Note to pumpers: Don’t bother trying to convert me…Many have failed before you!)
Kerri: What inspires you to take care of yourself? Are you inspired by loved ones? Is there someone or something that fuels your desire to stay healthy?
Miriam: Tough question. For me, it’s not loved ones. I’m single, and my immediate family lives far away. And back when I did live with them, I didn’t take care of myself despite their efforts. I’m very independent, and I do things on my own terms, not because someone tells me to.
In fact, it wasn’t until 1995, when my doctor told me I had too much protein in my urine and would need to start taking an ACE inhibitor drug to protect my kidneys from further damage, that I finally “got religion.” For more on this, please see the story on my website entitled “Taking Charge of my Diabetes.”
As I noted in that piece, the kidney thing startled me into the realization that nobody was going to do this for me: I had to take control of my diabetes, for my own sake. Another way of saying that, I think, is that I finally “grew up,” which of course is not connected with chronological age. As much as I hate to say it, fear is a powerful motivator. I’m terrified of going blind, losing my kidneys, or losing a leg. I will do what I can to prevent those things from happening.
But on the flip side, the self-satisfaction I feel when I see a good number on my meter also motivates me to keep trying. For a funny and slightly twisted take on this concept, please see my story entitled “Real Motivation for a Healthy Lifestyle.”
Kerri: Having lived with diabetes for more than 30 years, how do you feel about the promise of a “cure?”
Miriam: Oddly enough, I don’t think about “cure” very often. So much of what we hear that’s supposedly the Big Breakthrough never gets to the point of even being tested in humans. Seems like diabetes has been cured thousands of times in mice and rats…I mean, if you’re a rodent and you still have diabetes, you need to hire a better agent!
But seriously, we all know science works in baby steps: First there were insulin pumps, then pumps with algorithms to help you figure out your dose, now, a couple decades later, we’ve got a pump connected to a continuous glucose meter. Slowly but surely we’re getting closer to that “closed loop.” Would a fully functional artificial pancreas be considered a “cure?” Perhaps…But that could be a couple more decades away.
Similar story with islet cell transplants, which looked so promising a few years ago. If researchers could just figure out a way to do it without totally suppressing our immune systems and also preventing the islets from pooping out after a year or two, it’ll be great…Oh, and figure out a way to make enough for everybody. There is progress in each of those areas, but again, baby steps.
To me, progress includes advances other than actual Cures. Even if I had to keep taking shots for the rest of my life, I’d be thrilled to have a drug that could prevent or treat complications like retinopathy or kidney damage…And it might happen.
I think it’s important to celebrate the small stuff. At the same time, I try to live each day fully, embracing life despite the diabetes. To be completely honest, I don’t think there will be a cure in my lifetime. Obviously, I’d love to be wrong. But what if I’m right? You have to have a Plan B for happiness.
Kerri: What makes you want to write about diabetes? What are you aiming to accomplish with your pieces?
Miriam: Depends on the audience. In my day job writing for doctors, I try to give them a quick-read update on the latest medical news, reported from the meetings they don’t have time to attend and from the journals they don’t have time to read. Whenever possible, I try to add extra info that they won’t get from the drug company reps who visit their offices.
In my freelance writing for general audiences, my goals have changed somewhat over the years. Back in the 1980’s and early 1990’s there was less media coverage on diabetes, so I often wrote purely informational pieces. But now that diabetes has become front-page news, I try to educate via the personal perspective that can only come from a writer who has the condition.
And when I write for fellow patients, I aim to be inspirational and encouraging. Working on those pieces often ends up producing the same effect on me, which is good because they don’t usually pay money.
Kerri: For many people with diabetes, being diagnosed is a very frightening experience. What “sage words” would you offer up to a newly diagnosed adult? What about the parents of a newly diagnosed child?
To an adult: First off, don’t panic! Diabetes isn’t a death sentence. In fact, you might view it as a positive opportunity to improve your eating, get more exercise, and pay more attention to your overall health. You’ve been meaning to do that anyway, right? Well, this is that Sign you’ve been waiting for.
While it’s important to listen to your doctor, it’s also a good idea to do your own homework. Read up on diabetes from trusted sources, like the American Diabetes Association (www.diabetes.org). If you feel you need more information than your doctor is providing, ask for a referral to a nutritionist or diabetes educator. Doctors often just don’t have enough time to go over everything that diabetic patients need, especially when they’re newly diagnosed.
To a parent: First off, don’t panic! Of course it’s difficult to accept, but there is every reason to believe your child will do quite well.
Let me tell you how different things are for kids with diabetes today than when I was diagnosed. In 1973 there were no insulin pumps or flexible basal-bolus insulin regimens. I started with one shot of NPH a day, then two, and then graduated to split-mixed NPH/regular twice a day, with no opportunity for adjustment or flexibility.
The assumption back then was that children are little bundles of nonstop energy, burning calories all the time and in constant mortal danger of hypoglycemia. So, the prescription for all kids was to force-feed us three snacks plus three meals a day, no matter what. Of course I, being completely non-athletic and an avid sedentary book-reader, ended up chubby with consistently high blood sugars. How high? Who knows…There was no blood sugar testing or hemoglobin A1c measurement. But, judging by my always-orange urine test results, I obviously could have done without the 12-15 starches a day that had been prescribed for me!
But amazingly, despite extremely poor control that persisted throughout high school, college, and beyond—My A1c was 11.9% when I finally saw a physician after graduating in 1986—Here I am at age 42 with only minimal complications: My kidney function is normal now, thanks to better diabetes control and the lisinopril pill I take every day. I have mild “background” retinopathy, which was treated with a laser and has now been stable for almost 10 years. My vision is 20/20.
Of course, I’m not saying anyone should spend 20+ years in poor control — it’s now proven that controlling blood sugar as close to normal as possible reduces the risk for complications. However, my story does demonstrate that a few bad readings don’t necessarily spell disaster. Your child will have high sugars. Please, don’t panic.
One more piece of advice for parents: Try not to treat your diabetic child differently than you do your other children. After all, your non-diabetic kids shouldn’t be eating junk food, either! Once I was diagnosed, my mother began cooking healthy meals not just for me, but for the entire family. And my attempts to get out of chores and other responsibilities by “crying diabetes” never worked with my parents, either…It made me mad then, but looking back, I’m very grateful!
Kerri: And lastly, of course, if given the chance to have an aerial view of anything from the vantage point of a hot air balloon, what would you chose to fly over and why?
Aacckk…I’m afraid of heights AND of hot air balloons! But, if I’m liquored up enough to climb aboard, I’d have to say New York City. It’s one of my favorite places on Earth, and I’d love to see its gorgeous skyline from a new angle. Seriously though, I’d have to be drunk first…Can I go by magic carpet instead? J
Kerri: Of course you can. Thanks, Miriam!
You can visit Miriam’s website and take a spin through her impressive online portfolio.