Dear D:

I have Simple- Virilizing CAH that was diagnosed at birth. I have empathy for where you are coming from, I’ve had my frustration in this area also. My way of dealing with it was to create a mental time-line of the advancement of aspects of CAH (one of these days I’m going to get to writing it down). My time-line starts about when the first person that was thought to have CAH was diagnosed, to the discovery of cortisones, through the ever changing surgical techniques, and up to  taking dex during pregnancy. By doing this it makes me feel better, I’m able to rationalize that although it bites having an "orphan" birth defect things are getting better in regard to CAH but it takes decades and some of the improvements might of not had an effect on me but if the next person down the pike has it better then it was all worth it.

There is a TV show that comes on called Scrubs and the theme song goes something like this" I can’t do this on my own ...I’m no Superman ..." That little bit is so true about the medical community and they don’t really know about so many things such as CAH but they are learning thanks to studying people that came before. Even though they study, most likely they don’t have the right answers but they do have the best intentions.

The energy thing perplexes me because usually I’ve always had tons of energy, only because I kept moving but when I didn’t  wham ! no energy and almost like a clock running down. This is all very much related to metabolism in my opinion, what does your Endo say about the lack of energy?

I used to have jobs where I stood on my feet all the time too! The ones where I could move around where good for me but the ones where I had to basically stand in one place were not the best thing in the world. I also noticed that some of the same people that I worked with had the same symptoms. We tried to always wear good shoes with thick socks and we also put foam and rubber mats on the floor. We were even allowed to sit on stools for a bit as long as we did our jobs but nothing really helped, I had this pain in my knee for the longest time and then I got another job but the pain went to my hip maybe, it’s brusitus (sp) at least that is what the doctor said and who really knows. Like you there was times where the pain was so bad that my legs didn’t  want to work at all. I came remember pulling myself out of bed and holding on to the table next to it and pulling myself along the doors of my closet with all the while cussing as I stumbled into the shower. For awhile, my doctor gave me Vioxx but I wanted Vicadan to make everything colorful, pretty, and carefree. The Vioxx was good stuff and the pain did go away when I switched to another job which is half sitting and walking. Could you switch to another job at your company? or someplace else that is better suited for you? As long as your house runs :) that is all that matters and there is something that is called good enough and anything else can wait utill you feel up to it :)  

I don’t have any pain now but I am on my way to osteoporosis due to taking the cortisones my whole life but I’m also taking a perscription drug and calcium supp to bring the bone mass back (you could do this ) plus I’m also now into a calcium rich diet (having my yougert right now). For the most part except for special occassions like trips to the Endo, I  gave up alcohol for this flipping birth defect because I read that alcohol can leech away bone mass too. I must remember to drink after the office visit to the Endo or bring someone for everyone (lol) The poor guy is stuck with me until they ask me to leave which I hope not because I like him and he is very pro-active in treating my CAH. It’s about time that I found and Endo like this after so many years.

Optimal dosing?...  hummmm... I don’t know if anyone even today has that automatically, I think from reading this board that the optimal dosing comes from the request of these parents. As for myself, it was me that wanted to see if I could lower the dose of the pred and my Endo at the time was very happy with dose until I convinced him with a CAH mood swing that "we" as a team need to try something different (hehehe). The Endo after him took me off the pred and put me on Hydro and after 32 years, I found the cortisone that agreed with me :)

 Required stress dose? Yeah, I agree and thank God for the internet to inform me of the importance of that one! It’s weird though, I remember as a 15 year old instinctively taking more pred after barfing my guts out. I had one lady Endo tell me when I was 18 that, " I needed to learn how to give myself an injection of hydro" and when I asked her why she stated,"In case you get your head stuck in a fish bowl" I was so mortified of her flip sarcastic remark that I completely emotionally shut down. Really, some of these doctors are more harmful than good, I never had any illusions about these people anyway. I knew as a kid that I was just a curosity to them and anything that they did was a guess. All they wanted to do was examine my genitals out of fasination that I wasn’t born looking just like them. A clitoridectomy was their answer ? I knew as a kid,  it was their world and anything different was to be pondered and disected. DO NO HARM ? well that doesn’t really apply but does it apply to anyone ?

I’m just happy that those fine doctors didn’t kill me (smile) and looking at my medical records is chilling because there was a few times where I was very lucky to escape from the hospital to see another day.

Maybe, The Endocrine Society would like to do some research on ageing & CAH but you might have to be the one that brings it up.

We take what we have in life and we do what we can with it, Ya know?

I actually have a side line business for my old age and I’m going to get there by shear will and anger (I’m not crazy ...really..lol)   It seems like the people that make it in their golden ages are the ones that stay the most active and I thought it would be cool to open up a small kennel and board dogs. I might be wearing glasses and walking with a cain or maybe with one of those fancy ones with the three pronges on the end but the point is that I’m always going to be doing something.

Attitude for the most part is the only thing that I can control                                       the adrenal gland ?? mind of it’s own ..who knows ? the side effects of the replacement dose of pred and now hydro ? who knows but I’m not going down without a fight :) that reminds me, I need more Citracal.

I’m sorry to get all God on you but somehow God really does give me a peace about everything.

Sincerely,

A.P.Morgan