Carole “Cat” Triller
Greetings Dragon Slayers
I am divorced, and have a son Darrell who lives in Winnipeg, MB, Canada. I live in Vernon, BC Canada. The sunny Okanagan, where the grapes turn into some of the finest wines in the world. (Too bad I can’t drink it I was on Disability for 17 years, and now, I have arrived at the autumn of my years, and am on a Pension now.
I believe I have had Still’s since the mid-eighties, but wasn’t diagnosed until 1994. Even then it was a “working” diagnosis. I went through the lesser drugs, Plaquenil, Methotrexate ( all there was in those years ) I wasn’t able to tolerate Enbrel. So, there was the dreaded ‘roids, and pain medication for me.
My onset was life-altering. The SD ( undiagnosed ) attacked me systemically and the ER Docs thought I had Cancer, and my outlook looked pretty bleak. There was Pericarditis, renal failure (they thought) Liver and spleen involvement, I was in such distress, I was as sick as I have ever been .My GP put me in hospital where I was tested for everything from Rocky Mountain spotted fever, to TB and Lyme Disease. There was no definitive diagnosis, and when my blood work and everything else went back to normal I was told that it was just a freak event, and I should go on with my life. Easy for them to say! There were many other instances that I ended up in the ER. Only when I was sent to a rheumy did a light come on.
He was one of the best, though now retired, and he did what he could for me. I find that if I’m tired or stressed out things go wonky!
When I was diagnosed, I called the Arthritis Society and they’d never heard of it, and asked if they could refer people to me if they were called. Of course I said it would be the blind leading the blind!!!
The Internet was in its infancy, but I searched for something, anything on SD. I was on AOL and in a Chatroom with Dr. Wallace, and I asked him if he knew what SD was. Almost instantly I rec’d an IM from Joyce Irving saying “I have SD,” and there are about 25 people who have it, and have joined the group that our Founder Tom Kufahl began so long ago.
I was over the moon, and joined immediately. We were a small group, but being able to “talk” to others, share our stories, and information on this disease lifted my spirits, and gave me hope.
Few years later we started a SD group, called Stilligan’s Island. It was Jennifer Jay who created and researched a great deal of what is “still” the heart of our International Still’s Disease Foundation, and we thank her for her amazing work!
Our website is being updated and we want your input.
Remember that we are an all volunteer crew, and rely on Donations to keep the website up and running, as well as our programs; such as the Brochures, the Crisis Line and the cards that Melly sends out to our ill members. ( I recently was the recipient of such a card) I was so pleased and had a huge grin on my rather wan face! LOL
I have enjoyed a semi-remission with intermittent flares, so I consider myself fortunate. Some of us don’t get a reprieve, to those of us in that position, my heart goes out to you!
There are other health issues I deal with every day, as so many of you do!
So, welcome to our world, join us, write your history/herstory, perhaps someone will learn something from what you write here!
Smiles and regards
” what doesn’t kill you makes you stronger, but even the strongest among us can grow fatigued” Nietzsche…