Q:Oh my god, I'm actually crying right now. I'm the only person I know of in Toronto Ontario that has Still's and RA. I tried to commit suicide because i was afraid that I would never get better and only had doctors to talk to about the disease. I'm so glad I discovered this blog. Yes, we suffer and it's hell, but at least i know I'm not alone anymore.
Oh jeez, well now you’ve made me tear up! Especially because I know exactly how you are feeling and have been where you were.
I still catch the fear of 30+ years of agony creeping up on me and I don’t know about you, but I’m not sure that fear ever goes away. I do know, however, that you can learn to turn those thoughts off when they become too much, accept that you have no way of knowing when or if you may reach remission, and focus on the beautiful parts of every day— the beautiful parts being the little things in life. Have a good hair day? Eat an awesome meal? Get a good parking spot? Measure your success and positives by what you can do, not what you can’t.
You’re definitely not alone and I’m glad you’ve found this blog too. There’s a great community here all going through similar things and we are glad to support you in any way we can. Check out the #rheum and #spoonie community on Twitter too. If you make an account, send me a tweet @chroniccurve and I’ll ask fellow rheummates (get it? lol) to say hello.
Have you looked into going to a Lupus support group? That might sound odd, but most Lupus groups will accept Still’s and RA patients since their symptoms tend to be nearly identical and equally systemic. Here’s a list of ones in Ontario and around Toronto with contact info. Email the coordinator, explain your situation, ask for some basic information about the group, and see where it leads.
Please let me know if you want some great RA and Still’s Disease resources, links to forums, etc. I’ll send you an email with a bunch if you think they’ll be helpful to you.
Followers, if you are anywhere near Toronto and know of local resources, please send Horsemadeof- a message.
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- paperpoppystorebywheeliewifee said: “tooyoungtofeelthisold” is a private group on facebook for young people with chronic illness which is an AMAZING means for support!
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