Diabetes Self-Management Blog

"Living with diabetes sucks," my friend Sara Smarty Pants (SSP) wrote in her letter enticing people to donate to the Juvenile Diabetes Research Foundation, "but it has forged a strength that you may not understand."

Yes, it does. Suck, that is. And, also yes, it can give us strength—not to mention knowledge and a sense of accomplishment we may not have gained otherwise.

Toward the end of October, I was watching a show on Discovery Health about mysterious diseases. A man told of going to his doctor several times, complaining of abdominal pain, diarrhea, rectal bleeding, and the like. This went on for two years, as the doctor kept telling him “Hemorrhoids bleed a lot.” I was sitting there, yelling “Fire the doctor!” at the television. (I tend to talk to inanimate objects—they seem to listen about as well as the carbon units that hang around the house.)

Fortunately for the man, his employer changed insurance companies, and Dr. Ho-hum was no longer on the list of docs. His new one quickly ran the proper tests and diagnosed stage III colon cancer. Not so good, but maybe better than if he’d stayed with the original doctor. He could also have used a healthy dose of knowledge about when to listen to your body, because his was clearly telling him something was wrong, and changed doctors. With that, he might have accomplished catching the cancer earlier.

I’ve harped on this before, but it’s worth saying again: Do your own research. Find out what your doctor is supposed to be doing. If the doctor seems to be ignoring you or not following guidelines, fire the doc and find one who’s “with it.” It’s your health and your life. Believe me when I say that nobody cares about you as much as you do.

SSP gets a lot of her strength from standing up for herself. As she says, “The knowledge I’ve gained from fighting with Dr. Death and Nurse Ratchet [sic], insurance companies from hell, juggling food, insulin and exercise, empowers me and makes me Sara!”

Those of us who are fortunate enough to count ourselves among her friends—and those who read her posts to the Insulin-Pumpers.org mail list—have learned from her via some very amusing (albeit sometimes hair-raising) tales of her dealings with “Dr. Death…Nurse Ratchet, insurance companies from hell,” hospitals, and more. I think that hearing tales of her fights and stubbornness when it comes to looking out for herself have empowered many of the rest of us to follow suit. I know that I haven’t placidly sat back and unquestioningly done what the doctor said since I figured out that they really don’t know everything.

She and others have also taught me not to let diabetes hold me back.

Diagnosed at the age of 10, “I was darkly warned about the complications, and how difficult my life was going to be,” SSP says. “I was told that ONLY if I followed the rules, and took care of myself (taking 1 shot a day, and testing my pee in a test tube and not eating candy), that when the cure came around in 20 years, I’d be able to have my REAL life back.

“Thirty-four years later, I am still waiting for that cure and my so-called REAL life.”

But in the meantime, she says, “I am a director, a writer, a teacher, an activist. I build model rockets and crochet. I ski and camp, and I stay up all night and sleep all day. I travel all over in planes, trains, automobiles, sailboats, and hot air balloons. If this isn’t my real life, then this fake one is pretty great.”

As for me, I read, ride a bicycle, travel (in planes, trains, cars, and cruise ships), am basically a second parent to two teenagers, teach religious school (and I’m the director, too), bake bread, knit, serve on a board or two, can throw a party for a new baby on three hours notice, cook dinner for 50 without breaking a sweat, and more.

Yes, living with diabetes sucks. But I like SSP’s philosophy: Don’t put off living your real life because of it. She didn’t throw in the towel; I don’t intend to, either. If I do get to the point where I feel like throwing it in, I think I know whom I can call.

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Comments
  1. It’s always good to have that 1 person who will hiot you upside the head when you think of throwinf in the towel.

    Posted by Ren |
  2. Don’t be too hard on the guy with the bad Dr. Sometimes its the insurance. I know. When I was first diagnosed, I had one choice in Drs none of the others on my insurance was taking new patients. He ran tests, yeah, but never answered my questions and didn’t think diabetes education was important. “Just take the meds and come back next month.” I HAD to educate myself. I thank GOD fot this newsletter, the ADA, and Joslin online!

    When a new Dr opened up… I changed. It was even worse! She didn’t even check my A1c for a year!

    Finally, an insurance change allowed me to find a GOOD Dr.

    I do not regret doing the research myself. It lets me know i DO have a good Dr this time! This is my body, and I need to be the one “in charge” of my medical team.

    Posted by Ephrenia |
  3. This is the second pcp I have with this HMO, and he is as helpful as my gold fish. When I asked him to run some tests by emailing him, he either did not return my email as he should be or he was not available, away for a month. One good thing I can say about him; I asked for an Endo, instead he referred me to a Dermo and Uro specialist. I call that passing the bucket.

    Posted by nkwong |

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