I suppose I should begin by introducing myself. I am a 26 year old newly wed. I just graduated from law school and have just begun a job that I hope to someday love. I was diagnosed with Type 1 Diabetes when I was 9. At that time, things were strict, and by that I mean that I was not able to eat one extra grape nor 15 minutes out of my designated time frame. I hated birthday parties and Halloween. I was very well controlled for a while, thanks to Mom.
Then I faltered...and began a very long journey to very very poor control, for reasons that I shall not go into, as to not encourage such poor behavior. Let's just say I was too smart for my own good. I switched doctors probably 6 times in less years. No one wanted me. They couldn't figure me out. I was in and out of the hospital almost 15 times in about 4 years...actually, probably closer to around 20. The day I would get out was the day I would stop taking my insulin again. Our insurance almost dropped us. My mom asked me once when I was in high school to please at least wait until after the New Year to go back in ICU... So I stopped going to doctors once I hit college. There were times when I did really well, but most of the past fifteen years I have spent swimming in A1c's that average around 10...or more. A 300 blood sugar (when I checked every 6 months or so) didn't seem that bad; to be quite honest, neither did a HI. Finally some reluctant Dr. put me on the pump. I went only long enough to get that taken care of. The first Dr. who ordered the pump for me decided I wasn't ready. So I had it in my attic for almost 6 years. I must say, though, it is a lifesaver.
I have encountered a LOT of really bad diabetes educators and doctors who did nothing but discourage me and reprimand me. They compared me to "Good diabetics" and asked me why I couldn't just take care of myself. One compared me to her diabetic husband. He was diagnosed at 30 and was a "perfect diabetic". I was nine when I was diagnosed, and as she could tell, was far from perfect. I don't need to be compared to others. I need help getting to that place. Why would I go back to them? Like I said, I am highly educated and certainly not stupid. I know its bad. I just need someone with patience to help me get back on track...What I now realize, is that I am the ONLY person who can get me back on track.
What I lacked as a child was a support group for ME. Mom had one. She loved it. It was nice for her to talk to other Moms about how to "deal" with their diabetic children. However, I don't need someoen to DEAL with me. I need someone to be there for me so that I can talk things through and process them. Someone to share their own experiences and encourage me when I was down. I tried to start one of my own, but of course that didn't work. I was in high school. I recently went to a Juvenile Diabetes Research Foundation (JDRF) support group where I live. It was more of the same. Lots of Moms with their children. The children play and the Moms sit around and got tips on how to "deal" with their children. I need something for ME. I am 26. I neither want to play with 5 year olds nor feel pity for the Moms. I want to talk to someone with my own experiences. I want encouragement, because quite honestly, I am scared shitless. Terrified of what the future leads. I never used to think I HAD a future...but I really really want one. I now have a husband, and I hope to have a family. I BIG one. Who knows if I can? Terrified. So, I tried to encourage the local JDRF chapter to start a young adult support group. I told them I would be in charge of it. I told them more than once. It has been 6 months since I first brought up the idea and still no response. Of course, they are mostly Mothers...
So, that is why I am here. I need help. I need to get on track. I NEED to go to the Doctor. I don't even care if anyone reads this. I will pretend that people do and that they need me to do well, also. That whoever is reading this needs that little bit of encouragement. I will pretend that we will do it together. I am starting now. (Actually yesterday). I checked my blood sugar 4 times...most were not good. But today was better. We have to start somewhere, right? I want this to be an open forum, but I dont' mind talking to myself, either. As my name suggests...this is my SOS.
You can email me or chat with me at firstname.lastname@example.org
6 days ago