1. The conditions I live with are called:
Systemic onset juvenile idiopathic arthritis (Still’s disease), fibromyalgia, asthma, Sjogren’s syndrome, psoriasis, gluten intolerance, scoliosis
2. I was diagnosed aged:
Still’s – 6, but sick at 5
Fibro – 24, but had it most of my life
Asthma – 5
Sjogren’s – 24, but had it most of my life
Psoriasis – 20, but had it most of my life
Gluten intolerance – 23
Scoliosis – 24, caused by Still’s
3. How my conditions most affect my day-to-day life:
I have spurts of energy throughout the day, instead of getting tired at the end or being tired at the beginning of the day. I have to be careful what I eat, because several things can cause flare ups on their own (i.e., gluten) and cause additional issues. I have to wear sneakers/tennis shoes every day instead of cute shoes a 20-something should be wearing.
4. A new hobby / interest I’ve taken up since my diagnosis:
Basically everything right? I’ve been into gaming again a little bit, but mostly have been focusing on behind-the-scenes awareness raising. I recently met with my Representative about HR 1827 for example. And of course, there is always wedding planning 🙂
5. What living with my condition has taught me:
Theoretically you can do everything you put your mind to, but in reality that’s not true – even if it is something you really want to do. Sometimes we just can’t do certain things. And that’s fine. That’s why we have others in our lives – to accomplish together what we cannot do alone.
6. My advice for other people living with my condition:
Never stop fighting. A great person (Laura) once told me that “life with Still’s is still life.” I miss her more every single day and it still floors me that Still’s took her from us.
7. A gadget I couldn’t live without:
My smartphone. So much easier than pulling out the laptop – plus I have games!
8. What gets me through a tough day:
My fiance. Between his humor and his kind heart, I know that I’ll be okay no matter what comes our way.
9. How my friends and family help me:
See above! I have many friends who didn’t realize I was ever sick, and now that I’m vocal about my situation they’re being incredibly supportive. It’s very heart-warming.
10. This National Arthritis Week I’d like to say thank you to:
Laura. Even though you’re gone, you taught me so much about life. I know more about how to fight from you than I ever would have alone – and now I know so many others whose lives you’ve also touched. Fighting together against this disease makes it easier, and you were the first one to show me that. <3 nbsp="" p="">3>