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Replied Jun 24
A little bit about me (this is long, so bear with me!)…
My diagnosis: I have had T1 since I was 6 years old. My mom, who is a nurse and now a CDE (among other certifications) noticed that I was dropping weight, throwing up, and drinking tons of water. Apparently my brother (who is two years older than me) and I had both been sick with a virus, but my mom figured that it was normal—after all, it was January and we were kids. My brother got better, but I never did. My mom brought home a ketone strip from work and held it while I sat on the toilet and urinated on it. She took one look at the strip and then looked back at me, and, I swear, if I live to be 100, I will NEVER forget the look on her face. She did not cry or do anything to scare me, but she immediately went into the next room and grabbed the phone, telling me I was sick and needed to go to the doctor. My dad later met us at the hospital, and I remember my mom standing up holding me (even though I was 6 years old and she is a tiny lady!) next to a window at the end of the hospital hallway. We felt so alone. My mom tried to explain to me that I would never be the same, but I was unable to grasp what she was talking about, as I was only 6 years old. I didn’t think it was a big deal.
The shortcomings of the health care community: Another nurse in the hospital tried to make me feel better by saying, “don’t worry, you won’t have this for long. They are working on a cure right now, and you will be cured by the time you’re 12 years old.” What an idiot. I am still angry at that woman for telling me that. I truly believed that what she said was true, and I was obviously sorely disappointed on my twelfth birthday. I honestly thought I just had to hang in there for six years, and then be cured. When I was 11, news of islet transplants made headlines, and we thought that was a cure. Boy, were we wrong. Another big shortcoming of the medical community was the emotional beating I took from my endocrinologist every time I visited him. Back then, the adage, “don’t blame yourself, blame the disease” was non-existent. My endocrinologist blamed my family and me whenever my A1C was high, and when my logbook had “bad” numbers. But he was the only endo in my town who treated children. For years I wished that he would be diagnosed and know how it felt to battle numbers constantly, even though I knew that was an evil thing to wish!! I’m so glad that medical professionals are finally trending away from placing so much blame on patients; blaming the patient only leads patients to feel daunted and powerless, so it discourages them from even trying to maintain good control. Thankfully, I now have a FANTASTIC endo, and after my first visit with her, my A1C dropped over 1%. That’s proof that an endo who doesn’t blame the patient can be more effective.
I don’t know what I ever did to deserve such a great husband, but I thank God every day for him. The other thing that has helped me is the diabetes OC. It is amazing how motivating and uplifting it is to know that you’re not alone! I recently agreed to donate my "data" to the JDRF artificial pancreas study at UVA in Charlottesville, Virginia. I'm excited! I'll be heading down to Charlottesville in a couple of weeks to get started on the Dexcom 7. I'll wear it for one week to get used to it, and then get hooked up to an Omnipod. After that, the researchers at UVA will download my data from the Omnipod and the Dexcom each week. They won't be making any adjustments or suggesting any changes-- that's still my endo's job-- i
… ContinuePosted on August 17, 2010 at 8:53am — 4 Comments
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