Thanks to everyone! plus an update

August 6, 2004

I just wanted to say thank you to everyone for your wonderful welcome

and much needed advice! It's comforting to just read what a lot of

you have to say even if it's not meant for me. I too am having a new

symptom of itching. Mine is on my feet on the insides of my arches

and is made worse by warm water! Now that I've done some reading I'm

realizing that maybe this is something I should mention when I see a

doctor again. I survived the cold turkey prednisone withdrawal but

did have night sweats which I learned later were probably from drug

withdrawal. I did flare big time too but I think the doctor just

needs to see symptoms, well here they are. I broke out in major

mouth sores and had tender mouth, also had sores in nose, ears, and

one on my vagina (has anyone had one there before?? it really hurt)

I also have swollen lymph nodes. Even though I'm feeling bad, I'm

still not feeling as bad as I was before the prednisone YET. I

haven't had shortness of breath or much chest pain either which is a

blessing. I am going to give this doctor one more shot (he's

retiring next month anyway) just because he'll be ordering bloodwork

and I'm curious to find out what it says even though I realize it

will probably be repeated when I see my real rheumatologist October

26th. I'm trying to learn as much as I can in the meantime and

organize a concise symptoms list, history, etc... I'm feeling a

little shy still but learning some of your stories. I'm sorry to

hear of those who have spent time in the hospital and those who are

having serious life stresses going on right now. My mom is dying of

cancer now and I'm struggling with my disease, dx, whatever but

trying to cope and stay out of depression land. I'm finding the my

new mantra is ONE DAY AT A TIME and when necessary ONE MINUTE AT A

TIME. Hang in there all!

Love,

ee

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