Wednesday, January 29, 2014

Rheumatoid Awareness Day



Rheumatoid Awareness Day is observed on February 2.  One goal of having our day is to overcome the misconception that rheumatoid disease is just a form of arthritis.  Rheumatoid Disease/Arthritis has often been confused with osteoarthritis. But joint pain and stiffness is only a part of RD. Throw in extreme fatigue, balance issues, brain fog as the disease is attacking our joints, eating up cartilage, and sometimes attacks vital organs. It causes severe pain, frequent disability, and increased mortality.  It's a challenging painful disease at best. Outwardly we appear healthy but the pain inside is very real to each and every one of us.  

While there is no cure, we do have several treatments but most provide little relief nor give us any long term hope.  We often hear "I have arthritis too" or "just excercise, you'll feel better". Perhaps one day there will be enough money for research that they will find a cure so future patients won't have to endure what we are going through.  For me, my plan is to  just live day to day.   I keep getting out of bed and go do the best that I can do every day.  Sure I make plans but they often get rearranged or even cancelled. 

I am on the verge of a epic ride coming up this summer.  Right now it is all hinging on my RA and I'm looking at a 50/50 shot of getting to go.  Stupid RA!  I will tell you more later, hopefully while announcing that I'm going.

3 comments:

Anonymous said...

Terry
Day to day sucks but sometimes it is what it is. I had an amazing 4 months of remission followed by a nasty comeback with limited tools to use due to liver issues. I'm waiting to see if Orencia by itself will do anything and I know that it will be slow at best.
On the plus side my friends wife wants to unload a 09 KLR with only 1200 miles on it. As soon as things warm I can take it for a spin. Might be worth it even on a day to day basis if only for short adventures. Yup this sucks, but it could certainly be worse and I think that if we look for the bright side we can at least get a glimpse of it. I went hunting in the fall, ice fishing last week, and have an archery league tomorrow night. I guess it's not too bad after all.
Keep moving.
Phil - Syr NY

livingwithra said...

We need more awareness about this nasty disease. Thanks for helping bring attention to it!
Andrew

Terry said...

Phil, hate hearing about your liver issues, hoping that the Orencia will work for you. My KLR is a 09 and I can tell you they may not be cool or stylish but what they are is tough and dependable! plus there are so many aftermarket parts for them, you can do just about whatever you want to one. Sounds like you've been busy, keep up the good work and keep me updated on the KLR!

Andrew, wouldn't it be nice if we got a quarter of the attention that breast cancer gets. Not wanting attention for myself, just for the research and better treatments, possibly a cure.