Monday, October 7, 2013

10 things you may not know about my conditions

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="">

1 comment:

  1. Thanks for sharing this post, and I have to say that it was emotional and uplifting because despite these diagnosis, you have been able to see the good in situations and life. I was especially drawn to what you said about not being able to accomplish certain things even if you put your mind to them, and that is why we have special people in our life. Thank you for sharing.

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