Hey all. Just thought I'd share. I've been very ill and in the hospital since 12/22. Though not directly related to the AD, it certainly played a role in this mess. And, of course, the usual frustration of providers that don't know what they are doing with treating AD patients.
I was admitted because I grew bad bacteria in my blood, had a bad infection on my face, all following a foot infection in November from stepping on a nail. It got way out of control and I ended up with MRSA bacteremia, MRSA cellulitis on the face, MRSA in my lungs, and some undefined infection in my foot. The dang bug did its best to do me in, but at the moment it would appear we are winning the fight. I am slated to go home tomorrow. The docs tell me that part of the reason for the infection getting so out of control is my AD, and the fact that I take steroids on a daily basis. It makes us immunocompromised and that is never a good thing. This is one of the big reasons they want us to stay on the lowest dose of steroids possible to maintain ourselves.

Then of course there is the issue of stress dosing steroids when we are ill. Through the course of this illness, I started to go into adrenal crisis when the fevers hit and I got really ill. I was able to take extra steroids at home and fight it off. When I got to the hospital, the ER doc was amazingly well informed about AD and gave me extra steroids there. But that is as far as it went. THe docs that admitted me did not think I needed any stress dosing of steroids despite continually running fever and being sicker than hell. The one arrogant little jerk had the nerve to tell me my doctor was managing my AD wrong and he wasn't going to give me any more. Thankfully, the anesthesiologist that did my surgery yesterday was more well informed and did give me stress dosing for the surgery yesterday (They had to open up my foot and clean out the area that the nail had penetrated back in November). I had, however, anticipated this problem, and brought my own steroids with me so that I could take extra myself if they did not prescribe it, which is what I did.

I now face 6 weeks of IV antibiotics at home, and ongoing care for this miserable infection and trying to clear it from my body. I don't know where it will all end up. I don't know how to proceed with the steroids. I hope to taper back to my normal dose soon, if the fevers quit, and I have kept my stress dosing to a minimum. My doctor is away til the 11th, so I'm on my own til then.

In any case, it just goes to show that we are vulnerable to problems in more ways that just the cortisol deficiency and need to be vigilant. We are vulnerable to poor care and need to know what we need and when so we can be sure we get it. It has been quite an experience to be in the hospital like this, so sick - and it is really hard to fight for what we need in that condition.