Thursday, October 10, 2013

Want to get more involved with National Arthritis Week?

So you want to get more involved with National Arthritis Week eh? Well, you're in luck! Check out some of these resources:

Also, don't forget World Arthritis Day is on Saturday, October 12th!

Whatever you do, get involved and promote awareness. Diseases where arthritis is involved aren't always bone-focused (though those can be life threatening and scary as well); sometimes they're mistakes in the immune system. These diseases can - and do - take away adults and children that we love. The only way things will get better and change is if we make that happen.

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="">

Sunday, October 6, 2013

National Arthritis Week (7-13 October) and World Arthritis Day

This week is National Arthritis Week in the UK. I live in Wisconsin, but you know what? Arthritis Research UK is an amazing organization and I'm happy to be helping them out this week by spreading the word. The late great Laura of Still's Life was a huge supporter of theirs and I've been working with them to try to pick up a bit where she left off, even if it isn't anything huge.

All this week, I'll be posting information in general about arthritic diseases (like I don't normally anyway haha). You can feel free to ask how to get more involved, or contact many organizations directly. A great example is World Arthritis Day, coming up this Saturday, October 12th. You can visit their site to learn more about their activities.

If you'd like to make a pledge, feel free to snag the pictures above and post "My joint effort pledge is..." with what you're planning on doing. It could be something as simple as waking up despite your arthritic/rheumatic/autoimmune disease, or as involved as volunteering with an organization. More info can be found at the Arthritis Research UK site for National Arthritis Week or by asking questions of me and others participating.

Watch for some more posts this week (GASP) and upcoming information. If you tweet or use hashtags elsewhere, the following are the hashtags for this week: #pledgend #nationalarthritisweek and #jointeffortpledge