Monday, July 9, 2012

July is Juvenile Arthritis Awareness Month!

Ahh, I have had a lot of craziness going on you guys! I'm so busy this summer. It's great, but it also means my fatigue monster is super strong so I've been letting things slip over here. I'm sorry :(

But hey! July, huh? Did you know it's juvenile arthritis awareness month? Well, you do now!

At 24 years of age, I know I'm not a juvenile anymore... at least physically ;) That still doesn't change the fact that I have a form of juvenile arthritis. So understandably, this is something that I really support. The word arthritis entered my life before I even had a chance to learn names of bones or even my colors in Japanese. It is very tough to grow up with one of these illnesses and not know how to explain how it feels to others. I still find myself running into this problem, often making up ridiculous (though accurate) descriptions like how it feels sometimes that my bones are filled with gel they use to make ice packs instead and it can't decide if it wants to be a hot pack or an ice pack. I know how it is to get teased through school, to be bullied because you are different and physically otherwise capable. And I know what it's like to transition into the grown up world - finding your own healthcare, navigating employment options and collegiate activities. It sucks. But you know what? The other kids that I know that grow up with these diseases too... well, they're the toughest bunch of kids I know.

The rest of this month, I have some great things to share with you guys. All that time on hiatus hasn't been exactly spent not thinking of you :)  Coming up, I want to focus on children dealing with juvenile arthritis - posts on dealing with schooling, with bullies, etc. But I mostly want to focus on the awkward transitiony stages - transitioning from child care to adult care, navigating insurance on your own, explaining your illness to jobs and professors, etc. I'll also be posting tips on how to do every day things easier, like dry shampooing instead of hopping in the shower on high disease activity days. And I'm even working on a video! Or maybe a few. Whoa!

For now, I'd like to share some great books and further sources of information on arthritis in case you are interested. These might not just be juvenile centered, but I have found them to be helpful for me.


  • A Primer on Rheumatic Diseases by the Arthritis Foundation - This book covers essentially every disease in the rheumatology field as you might expect. It has some great information on Still's diseases as well as other forms of arthritis that I didn't even know but that made so much sense. Very very helpful, but keep a dictionary handy. Plus, um, did you see you can buy it for like a cent used? Seriously, get it.
  • A book on anatomy - Just find a generic classroom copy, preferably one that focuses on the whole body and not just the skeleton. Did you know that your tonsils are a part of your lymph system? I didn't until I did my anatomy research and now I know why I get sore throats!
  • Out of Joint - This book is about the journey of a young mother who falls ill with rheumatoid arthritis. Her story is not only comforting for its honesty and truth but also inspiring for her strength and character.
  • Partners in Healing - This book can be very helpful for those who need care as much as care givers. It offers care givers a unique peek into our minds though, and helps them to understand what they can and cannot do in order to help us on our journey with chronic illness.
  • This website has a few documents on making the transition from a child to an adult when it comes to healthcare.
I'm going to try to keep things more generic this month instead of focusing so much on Still's just in light of JA awareness but I will probably have a post specific on Still's research I've done and a comparison between AOSD and SOJRA. 

1 comment:

  1. KirBir!

    I am sorry the fatigue monster is creeping out of its' cave! However, I am ecstatic about all of the topics you want to discuss. I am so thankful for your websites and book recommendations. I am going to check out the book about a young mother. As you know, I have been struggling with the idea of being a mother. This topic is on my mind a good bit and I'd like to read someone else's perspective. Yet, my perspective is different because I full well know I have RA and am on many medications that do not want pregnancy to be an option. I ponder about genetics, abilities, disabilities, drug treatments (or the lack of). Do the questions ever end?

    Thank you for making us aware that it is Juvenile Arthritis Awareness Month. Although I was not diagnosed as a child, every doctor thinks I had JRA but no one would listen to me in the early 80's. Ugh, oh well.

    Take care and rest when you need to!
    Hugs!
    A

    ReplyDelete