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. My childhood with T1:
I remember a nurse in the hospital giving me my first injection, in my right leg. She brought the needle close to me very slowly, and I freaked out and cried. I remember she was very callous, not at all sympathetic, and told me that I would have to get used to shots, because I’d be giving myself plenty. That made me freak out even more. What no one prepared me for was the fact that I was different from everyone else, and I came to absolutely hate that, because I had always been shy and just wanted to fit in. Here's a photo we came across recently of me giving myself an injection. I was probably in the second grade or so: 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. Will there ever be a cure?
I know it’s a controversial topic, but I’ll go ahead and add my $0.02. I am convinced that islet/beta cell transplants will not result in a permanent cure for T1. T1 occurs because of an autoimmune attack on the beta cells. This autoimmune tendency, virus, or whatever you want to call it will always be present in those of us with T1. So the immune system will always attack beta cells, whether those cells are from our own bodies, from embryonic stem cells, or from organ donors. In my opinion, there is no way to cure the disease without getting rid of the autoimmune attack. I believe the media has acted almost unethically by spinning the embryonic stem cell issue to make everyone believe that stem cells can cure T1. In my opinion, the best hope us T1’s have is the research of Dr. Denise Faustman, who has cured T1 in mice by halting the autoimmune attack. She is now attempting to translate this research to humans. Although it may not work, at least her research is finally opening the eyes of the scientific research community to the fact that they need to take care of the autoimmune element of T1, rather than simply replacing beta cells and expecting the immune system to refrain from attacking them. For more on Dr. Faustman, go to The Iacocca Foundation website
. My treatment:
I have been on an insulin pump (Minimed) since 1992. I cannot imagine treating my diabetes any other way. I love the flexibility of the pump, with regard to diet, exercise, and scheduling. I still eat low-carb and tons of vegetables, but can’t imagine following a set meal plan or schedule! I also keep my A1C’s low by running (or doing some other type of cardio) at least 4 days a week. Overall, though, I have my family and husband to thank for my health. My parents took excellent care of me when I was growing up, even through the times when I was a teenager and went through the notorious rebellion stage. I don’t know if they will ever know what a blessing they have been to me. My mom constantly researched new therapies and asked tons of questions of doctors and other nurses she knew; even before we knew to count carbs, and before anyone said the term, “insulin-to-carb ratio,” we were already doing carb counting, thanks to my mom being smart and innovative. I also thank my older brother for helping; he used to go and find me under the bed or in the closet when it was time for my injections or finger sticks. My family always encouraged me, and never allowed me to believe that diabetes would limit me. Without my parents' encouragement, I would not have made it through college, law school, the bar exam, my judicial clerkship, practicing law, running races, and a host of other challenges. They truly empowered me. And I have my husband to thank for helping me through the lows and being an excellent emotional support system. I rarely ever tell people I have T1, and sort of live “in the closet” with it, and he is understanding, nonjudgmental, and offers me hope when I feel hopeless. When I first told him I had T1, he was very interested and intrigued; he almost made me feel like it was “cool.” I had never felt that way before; many relationships I’d had ended because the guy made me feel like a freak. Here is a wedding photo of us. :)
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! Best Diabetes Resources (in my opinion):
By far, the best book on diabetes I have ever read is James Hirsch’s Cheating Destiny: Living with Diabetes
. The author and his son both have T1, and it’s full of true stories of the history of diabetes, those living with diabetes today, and researchers. It’s excellent; anyone who has diabetes or cares about diabetes MUST read this book. I also love the blogs www.diabeticrunner.com
, although I don't always have time to visit them as often as I'd like! I also believe the magazine Diabetes Health is helpful, although a lot of the information it usually contains concerns products on the market, and I do not find that information as helpful, because I am somewhat wedded to my OneTouch Ultra, my Minimed pump, and my Humalog insulin! Last, but most importantly… Why do I have T1?
I don’t think I’m the only one with diabetes of any type who has ever asked, “WHY ME? Why can’t I be like everyone else? What did I do to deserve this?” I have struggled with this question for a long time, and it’s difficult for me because I am a Christian and believe that God is in control of every aspect of my life. And knowing how powerful He is, and knowing that, with the snap of His fingers, He could cure me, I wonder why He doesn’t. I believe I finally found the answer a few months ago, when I was listening to a podcast that brought me to tears while riding the Metro. The podcast is entitled, “The Great Physician,” and is part of the Diabetes Without Complications series
. I agree with the podcaster’s take on the “Why Me?” question, which is found in a really short passage, at John 9:1-3: 1. As Jesus walked along, he saw a man who had been born blind. 2. His disciples asked him, “Rabbi, why was this man born blind? Did he or his parents sin?” 3. Jesus answered, “Neither this man nor his parents sinned. Instead, he was born blind so that God could show what he can do for him.”
I believe I have T1 so that God can show His power in me. Maybe it will be in running my first marathon, even though years ago, doctors would have thought it would be impossible for someone with T1 to run a marathon. Maybe I will one day be cured, so that God can show His power in me. Or maybe God will exhibit His power in me by keeping me free of complications over the years, or having a baby one day. I leave it up to Him, but submit myself to being a tool that God can use to demonstrate His power.