Friday, July 20, 2012

"Jordan has Juvenile Rheumatoid Arthritis."

In February 2005 those 5 words changed our world -- Jordan had the official diagnosis. I had no idea what JRA really meant or the fight J would have just to be a normal kid. I believed our first rheumatologist, and everyone else, who said she would be fine in a year or 2. Well, we are now in 2012 and Jordan is in her seventh year of this disease. Guess what? She wasn't fine in a year or 2.

In 2008 we did our first Arthritis Walk and I started this blog. The blog was intended to keep family and close friends updated with what was going on with J. Little did I know that 2 of ladies I would come across by chance, just by searching for other JA/uveitis blogs, would become family to me.

I don't remember who I found first but Amy and Joanne are 2 fellow JA/uveitis moms. I followed both blogs for quite a while before we found our way to a JA support group on Facebook. We've made new friends over the year via our blogs, Facebook pages and private groups but there we have a core group of JA moms that have become sisters. We vent, celebrate our kids JA victories and set backs. We laugh, we cry and we make fun of some silly southern sayings. Those of us who are within driving distance see each other as often as possible and those of us who aren't, talk or text just about daily. 

This week is the annual Arthritis Foundation JA conference. Every year I say, "We'll go next year." Well, that has yet to happen. Until this year. Thanks to my awesome, wonderful, ever so funny sisters, I'm there. Kinda. Someone had the brilliant idea of bring "flat" versions of those of us who couldn't make it to St. Louis.


Throughout the conference we are getting photos of our flat selves seeing the sites, having dinner and participating in the conference.

Here is flat Stacey at dinner last night

 
See, even flat Stacey takes her meds! 
 

If you really know me, you know how much something so silly means to me. Every time I look at these photos, I cry. Apparently flat Stacey cries too because her face is a mess ;)

I love you girls.

Wednesday, July 18, 2012

The "Old" Me

Summer is here. I have a love/hate relationship with summer. Usually summer is miserable for me. I swell, I hurt and I'm generally very, very grouchy. This year I was hoping things would be different. So far they are.

A month ago I had extremely swollen feet and I was unable to walk. My hands and hips hurt so I was needed pain meds and  muscle relaxers pretty much 24/7. I had my second upped infusion on 6/20. Within a week I noticed I didn't need the meds. Over the next week or so my swelling went down. As of last week, my swelling is GONE. I have some mild swelling in my right ankle when I'm on my feet all day. That's it.

My feet, 6/11/12 (By the way, this is the day the LA Kings won the Stanley Cup)



Last week I decided to take the chicklets to the beach. Totally random, spur of the moment type thing. We tried going to our usual beach but it was crowded. I decided to go further north to the beach Rick and I started going to about 13 years ago. There is a long path/trail heading down to the beach at a pretty steep incline. I didn't have a problem with this walk before getting sick. But after, it became almost impossible for me to do. 

I went from those feet, to being able to walk a couple of miles and climbing rocks at the beach in less than a month.


It's the very small things that I get excited about. Things that I haven't been able to do in years that I can do now make me so very thankful for our current medications. I've got a little part of the old me back.