Update

hi barbara, im new to the site and i have been reading the threads that you guys are posting. my best friend had a stem cell transplant at northside hospital. thats in atlanta georgia. i was with her and the day of the transplant was considered her new birthday. it really made a change in how she felt for the better. once done she didn have any problems.

i guess what im trying to say is the transplant really helped her. we were also in a sterile ward of the hospital. i know in that ward they try to make it like home for you guys.

i hope your pain gets better with the morphine. i will pray for you to feel better. i know lots of people on this website are thinking about you. janet

Hi Barbara

I just wanted to say I am sorry you are still suffering so much. I wish you could get some relief that you need so badly. Just know that I care and my prayers are with you.

Hugs

Suzane

Thanks I appreciate everyone kind words. Janet I'm glad to hear that your friends stem cell worked for her. So far I've not been told that I will even qualify for a transplant bone or stem cell. There are age limits and they also are worried, with my auto immune disease of complicates from either type of transplant.

WB, yes I believe you found the Dr that treated Dede the Tree Man, Dr Gaspari is a great Dr, and my Drs at NIH speak highly of him. Their concern is that he has only had one patient be successful using the drug he's trying on me. With my kidneys not working at full potential, my NIH Drs feels they will HARM me more than help me.

As to your question, Bethesda Naval Hospital, is across the street from NIH. However, they are not run by the same people. The US Surgeon General is at NIH, and Public Health is there at NIH too. NIH is strictly a research hospital, they do not have an ER and your everyday person can't use the hospital. Folks come from all over the states and world to either be evaluated or treated their.

SB, things are cool, I truly didn't mean anything by the caps. When I was well and living in Europe I would travel to refugee camps to help people. I certainly don't think its shameful to have any physical or mental disease.

As to how I'm feeling my ribs really ache. I'm also aphrensive as my Dr at NIH, feels IF we can wean me off of steroids, possibly my warts will improve. That is a theory, she gave no promises. Of course, a plan on paper is way different in the here and now. I've been on high dose steroid use for almost 12years.

I know as we taper the steroids I'm going to feel pretty bad. I'm frightened, if I'm not taking something to control my Lupus/RA I'm just not to sure what my disease is going to do.

Well I'm gonna go, I need some lunch and then a nap. Hope you are doing well.

Hugs,
Barbara