Hi,

I just read a’s post on the SSI archive.  What a horrible horrible experience.  In honor of you and your daughter’s horrific experience and also for my Chelsea’s benefit, I promise NEVER to be without a solu-cortef injection on my person. I don’t care if I have to hock the cat to get one I will never trust EMS to be informed.

SSI in CT is a pain in the large butt area. I can’t get it and I have severe fibromyalgia and must take pain meds to function in an at home type situation. It takes every thing out of me to even go out on an activity such as to a fair or something and last year I did the big fair in MA in a wheelchair. They (SSI) have denied me twice. There is no way I could work to support my daughter or afford her healthcare and meds (one months worth of meds WITH HEALTHCARE for Chelsea is over $150......that is CO-PAYS!!!! Cortef, Lupron, allergy meds such as Zyrtec-D and Singulair, not to mention the doctor visits.....$45 co-pay at Endo, $30 for regular pediatrician to get Lupron shot once a month....and GOD FORBID she should get sick) So I have to be REALLY nice to my very workaholic husband who supports us very well, but things are tight.  I haven’t even tried to get SSI for Chelsea as I figured if I can’t get it and I AM DISABLED, how the heck can I get it for her when she functions like any other "normal" kid....just needs meds and extra attention when sick.

As far as MA goes, it took my severely diabetic sister who suffers terribly from many of the things diabetics do such as the syndrome where they can’t feel it if they break a bone (I forget the name), almost constant UTI’s, eye problems and all...it took her 5 years to get approved.

I agree with all of you that SSI should take a better look at CAH and the needs brought about by the meds required for these kids.....and while they’re at it, bone up on the severity of Fibromyalgia too. What really really irks the heck out of me is that I know of someone who is a DRUNK and gets SSI for his "condition" with no problem. Where the heck is the logic in that??????