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.
*permission to post publicly granted
Happy Rare Disease Day…and happy leap year birthday to me! Officially five years old today ;)
So do me a birthday favor and buy a bracelet? Support those of us who suffer from these diseases but want to make a change in the lives of others. Support the next generation of kids with autoimmune arthritis and give them a chance at a cure, a chance at a better life without pain and suffering. A better treatment for those of us who don’t respond to the usual, a cure is all I could ever ask for or hope to see— the ultimate gift.
Today was an absolutely awful day, full of incompetent doctors (wait until you hear about this one. He trumped all of the ones previously mentioned), horrible weather, and excruciating pain while running on quite literally no sleep, but I cannot tell you how amazing it is to read messages telling me how that last post resonated with so many of you, and how many of you took something away from it.
Coming home to such great responses definitely brightened up a dreary day, along with:
- Chronic Curve made the Wego Health February Newsletter
- The International Autoimmune Arthritis Movement is has offered to promote my CURE RHEUMATOID ARTHRITIS bracelets and work with me to support World Autoimmune Arthritis Day. Details to come, but I am so excited to be a bigger part of the movement.
- I have a tiny amount of chocolate hearts that I am going to enjoy so long as my stomach permits.
- Envelopes for the first shipment of Rheum Awareness bracelets are addressed and ready to be stuffed and sent tomorrow, thanks to the help of a good friend.
For those of you that use twitter, I post/retweet a ton of great advocacy/activism opportunities on there and facebook. Both are usually updated faster than this blog and occasionally I give sneak peeks into upcoming projects and posts, so like/follow & share!