Wednesday, November 28, 2007

This is my SOS.

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


Minnesota Nice said...

Hi there. I saw you joined Tu Diabetes. I am a member too, and also a blogspot blogger.
I have had db for 33 years and had no control for about 25 of them. I think it is a miracle that I am still here in reasonable health.
I came from an extended family of 30+ type l's, and even before I developed the condition I had witnessed several lives unraveling, a thread at a time, with horrible complications. When I was diagnosed I figured, "what's the use - if I'm gonna end up like them I might as well enjoy myself on the trip out". So, I ate whatever I wanted, and, back then there was no home bg monitoring so nobody knew the difference.
I have been working on my control for the last 6 years. Two of those years I was a "model" patient and had consistent AlC's in the low 6's. And now, again, I am slipping. Each day I vow to begin anew and then end up eating someone's birthday bagel at the office and the day just spirals downward.
I have been blogging for a year and a half now, and it has helped a lot. But, still, I am the one who has to make the day to day, meal to meal decisions, and I am not very good at it.
I gotta run.
Take care,

Bernard said...

Best of luck on your quest. This is such a tough disease, but it sounds like you can take it on.

FYI, I'm going to add your site to the diabetes search engine.

I'll bet you get a lot of support from the crowd on TuDiabetes. Handling this disease is a lot easier when you've got friends who know what it's like to live with.

Adjoa said...

"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."

As you can see we do read and we do need you to do well. keep talking.