About myself

[Guest guest]

Hello Folks,

I was originally diagnosed with Stills Disease while I was in the hospital

with " FUO " , fever of Unknown Origin. Lots of other things also happening, heart

attack, enlarge lymph nodes, rash and skin hives, aching muscles, joint pain and

swelling. The doctors ran the full gambit of tests, even removing the skin

while it was " hiving " (seriously, they just removed the top layer of a hive).

But they couldn't figure it out. I was two step from a full exploratory when

this visiting doctor from the UK, Dr. Brown, came by the room (I was always

being examined by doctors, visiting or staff all the time), and he felt my hand

joints and looked at the chart and said, she has Still's Disease. Treat her

with yada-yada (I learned it was prednisone) and within 2 weeks I was better and

able to go home. I had been in the hospital for almost 6 months. It wasn't

easy after I left the hospital cuz the doctors were treating most of the pain

with opiates (and yes, I got

addicted,,,morphine and Demerol were given to me daily). Lots of pills to

sleep at night and others to wake me. What a ride. The problem was when I got

out, there wasn't much support except for follow-ups. I had to " cold turkey " by

myself. Did I mention that all this took place in 1975...before cable, ipods,

and the Internet.

Because arthritis was not consider a " disability " , I had to register for

welfare just to get insurance for the medicine. It wasn't so bad really as I

was taught " pain " therapy so I could live with the pain. I had to walk with

crutches for a little bit but I was able to eventually wean them off and use a

cane. My cane was stolen twice so I made adjustments and eventually forced

myself to walk without any assistance.

The doctors at that time also had a conference about me as Still's Disease was

rarely heard of at that time. I was told that my prognosis was either to get

worse, stay the same or get better. I was also told that there was only myself

and 2 other women who had this disease in the entire Los Angeles area. With no

information, the only treatments were aspirin or go back to hard-core pain

killers. Gee, what a choice.

I happen to find an article about this diet that helped people with arthritis

and I found the book and followed the diet. It worked. It was called , The

Chinese Arthritis's Diet " . No red meat, no alcohol, no nuts, no spicy food (not

even pepper). At first it was hard because I am Mexican and spicy food was very

much my diet and I loved steak. But I made the choice and ate lots of fish and

veggies. It really seemed to work. For about two years I followed it

religiously and then went back to red meat, wine, spices and sugar.

I was mostly worried about having kids but my doctors assured me that I would

be alright and getting pregnant always seemed to put arthritis systems into

remission. So after 2 years, I finally got pregnant. There were problems

during and after the pregnancy; heart and otherwise but I overcame most of them

as I try to stay positive about life.

My daughter is 30 years old today, thriving and very healthy. I thank God for

that. Everyday, there are aches and pains but after 30 odd years with pain,

it's hard to tell what is going to kill me and what is just me, getting old. My

knees ache and I cannot dance as much as I used to but I can still work and earn

a good living. I have my hobbies and friends and now there is a web site for

people with Still's.....who would have thought???

It has been very interesting reading other people's stories and I hope I

haven't gone on and on and on....

Feel free to drop a line and discuss. Thank you all for listening and if

there is anything I can do, let me know.

Toni Osbon

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