Dear Gretchen,

I hope everything works out for your daughter and you could just to prove a point print out every condition that needs steroids for life...hummm asthma ....Addison’s... and give it to the teacher for her I believe you wrote her sister the nurse but I know you have better things to do : ) 

My own NP stated she didn’t know anything about CAH and it’s one thing not to know or even to be wrong but to say nobody" takes steroids for life" is scary and disrespectful to the vast, vast field of medicine. I was getting my prescription from the local pharmacy like I have down here for the last 15 years and I rolled up to the drive through on Friday only to be told by the tech that my 25mgs/ day of hydrocortisone was alot and they called the endo office to confirm that and could I please come back on Monday since the Endo office was closed when they called and were waiting for a call back

I thanked the tech for their cautiousness considering Hydrocortisone isn’t a narcotic and can’t kill me if I take to much and then I briefed her then as to why I’ve taken steriods my whole life with my elementary knowledge of being 11-hydroxylase deficient vs. 21 and why we all with CAH need the hydro to keep the endocrine system running like hers and the dude behind me that was waiting for his script. It wasn’t until I stated that I was going to stick the store with the ER visit if I didn’t get my hydrocortisone right now ; ) that she produce the Hydro just like that ..lol most of all this comes down to communication and not understanding on their part but don’t let them get to you or her. She likes school THAT’S wonderful!

Dear MarthaF,

Thank you for answering a question for me that I was going to ask about us being at risk for autoimmune disorders because I have SVCAH, Ceilac Sprue--my immune system attacks the protein gluten found in wheat and other things or is it the gluten attacks the immune system not sure anymore. I need the final biopsy though but I have the antibodies. Thyroid Hashimoto’s antibodies- I was diagnosed with that after the cancer and I was furious ---just lovely my immune system is attacking my thyroid but it is borderline and the Endo is watching it.

Going to need a filing cabinet soon, I started wondering about all this with the gyno cancer and reading hydro lowers your immune system away but the docs do say that we don’t take enough for that to happen but I’ve also read about long term steriod use lowers immune system. Now this type 1 Diabetes? Lupus? Rheumatoid Arthritis?  anything that might be coming around the bend will be managed- you just file it and go on with life. I want to walk/jog/run a 5K.