Megan - Thank you so much for the explanations. Where do you work - to know so much? 

I have always known that my experience ...several crises and two 4 day stays in the hospital, as well as really dealing poorly with stress...seem to be more than most with LOCAH. Even my endo last week mentioned that I really have a hard time with stress - and he treats more than 25 patients with CAH. For me too much stress manifests itself in shakiness, jaw tightness, headaches, sleeplessness, and no energy. Being a teacher, there are several times a year where as a teacher I am under a lot of stress... the beginning of the year, before Christmas, and around now (school year winding down) I remember my first day of teaching 7 years ago... I actually missed the first day of work because the stress got to me so much.

While I was in college I had to take a medical leave the first semester of my teaching program... my meds were too low of a dose (.25 of dex) and with the stress I couldn’t even function to take my daughter to school, say a whole sentence without forgetting what I was saying, I was white as a ghost, no energy to even walk 1 block, exhausted from just taking a shower and washing my hair. I didn’t know enough about CAH at the time... didn’t know I was in bad shape BECAUSE of the CAH. I finally had a crisis and the hospital thought it was meningitis (I didn’t know any better at the time either). Well - after I got home I still felt horrible - called my endo (a lousy one at the time) and said I wanted some labs done.... my 17OHP was 1797. For me that is unbelievable. I doubled my dose and amazingly recovered just about overnight. This same doc when I asked for some info on CAH - he gave me a textbook he had in his office from 1960something with 2 pages on CAH. This was in 1996!

Its amazing we make it, so little info out there (though getting better now and thank God for the internet) I started coming to this website about 8 years ago and it’s been a lifechanger... before I couldn’t do anything where I exerted myself physically - just couldn’t do it... now I can pretty much do everything I want to do. Of course I’d never go anywhere without additional meds on me at all times.

I do try to pace myself and I know to not take on too much at one time. For me, emotional stress is just as bad as physical stress. I know not much is written that concurs with this (that I’ve read, anyway) - but I know it to be true for me.  I can’t even watch scary movies... I feel sick afterward from the stress.

Thanks again Megan.