This is my SOS!


#1

I am copying my post from http://thisismysos.blogspot.com/ to here. I will try to keep them both updated for now, but we will just have to see which one prevails ;)

I suppose I should begin by introducing myself. I am a 26 year old newly wed. I am highly educated 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 this.is.my.sos@gmail.com


#2

Suzanne—i was diagnosed at 4 years old…i think some of the best advice i got throughout the years were to set goals that are reachable…all the talk about keeping your BS between 80 and 120 seems unacheivable to me…so for a long time (years) i set my goal to keep my BS below 200—then a few years ago i lowered that to 180. I still hit the high 200’s often, and even hit the 300’s at times. My doctors never cared much for my BS goals of btw 80-180—but that is what worked for me and i didnt get overwhelmed with such a tight range.

I eat what i want, when i want—minus the 20-30 minutes delay of waiting for my insulin to get working… but for the most part, Diabetes doesnt rule me.

I got a CGM in June and my A1C’s have improved to the point of insanity…my overall is great…but i still bounce from 70 - 280 and back to 70— From the CGM i learned that i am terrible at Carb counting…and insulin takes alot longer to work for me than the 10-15 the companies claim—i am 30-40 minutes.

I had 2 cousins that were also diagnosed as kids…so we all grew up together with shots, urine tests, fingersticks and no candy on Halloween. I feel lucky that i had them, and my mom had her sister to go thru it all. My brother was diagnosed with T1 this summer, he is 33.

Anyway, my point is, take baby steps and set realistic goals…it doenst only work with diabetes, but in almost all aspects of life.

Mollie