Anon,

Are you on anything like Actonel or Fosamax (sp?) to stop more loss of bone and increase bone mass?

Have you ever tried Vioxx to help manage pain?

It wasn’t until my late 20’s that I started to really look into the side-effects of the cortisones. Bone-density test need to be started when someone is in their early 20’s at the latest (In my opinion). My former Endo’s never brought up bone density tests or calcium. I was the one that had to ask them. I finally fired them and looked for an Endo that was more proactive. I knew that I found my man when he brought up going for a bone density test before I did.    

I understand your anger and I fully realize that CAH is different for all of us in many ways. You have a right to your anger and I hope you find a way through it somehow. We don’t have carbon copy bodies or lives : ) So each person’s reaction is different. Heck, the surgeries aren’t even the same. Some people wanted them and some feel that we could of waited : ) Some had clitorectomies and others had recessions. Some are happy with the outcome of the vaginoplasty and others aren’t. A very kind man once wrote to me and offered this, " Medicine isn’t always right but it is forever changing." That one sentence really goes along way for me.

I get angry at times and I have dark mean anger but I find that having a sense of humor seems to help more. My anemia put me back in the hospital and I was furious about that but the one bright spot is this doctor that makes me laugh. He is so funny and it takes away the fear and anger of "Oh man, I have CAH and this too ? What else @#$@% ?" and replaces it with well OK ...it could be worse and I can deal.

Also for me and there is no way around it but I’ve found that any form of exercise ( swimming, walking etc.) not only helps keep the weight down but also helps keep me out of depression. Stress ? Any stress that comes in, I must give it right back out or let it bounce right off me Because  my health is more important. Most problems can be solved somehow and the ones that can’t ..well ..I tried and that is what matters.

JUST KNOW THAT BY POSTING YOU HAVE HELPED some kid or parent become more aware about the possibility of osteoporosis and that means something right there.  TAKE CARE   AIMEE

 

Dear Cherry,

Thanks, that means a lot to me!

Aimee