Year Two with RA: Learning to Live with Autoimmunity

Hi All,

I have not created a post of my own for some time and thought that I would share what things are like with me.  I've completed my second year with RA and am entering into year three.  Year Two has been one of learning:  Learning a lot about RA and automimmune disease; learning how to live with a chronic disease, and learning a lot about myself as I face this major life challenge.

Meds:  Starting on Embrel marked a real turning point for me and since then I have slowly been weaning off prednisone (and I mean slowly).  With a flare in the fall and in the spring setting back on my weaning schedule, I am just now down to 0.5 mg every other day.  Believe it or not, even with that tiny little dose I have more joint pain than I did when I was taking 0.5 mg daily.  I guess my adrenal glands have really taken quite a vacation!

Energy:  My energy levels are better, although far from normal.  I have learned that it is imperative for me to pace myself, and so I do.  I really seem to do best with ten hours of sleep, which seems like a lot to me.  Unfortuantely after about eight my joints start to hurt so I compromise with eight hours of sleep and a nap in the afternoon.  My previous schedule would never have accommodated this, but managing RA is pretty much priority one these days, so I now have a schedule that I previously would have regarded as cushy.

Work:  What work? Okay, okay. I am working some and for the ability to do that I am greatful.  I have not however, returned to Nursing.  I went through a period of grief over that, and then this gentle feeling of relief came over me.  Sure, I miss the things I loved about nursing, but nursing is a hard, stressful, and demanding line of work, and it really seems to be better for me to let it go.  I haven't entirely given up on this, but unless I could find a position that really suits my needs I am considering retiring from working in health care.  Twenty-five years is a long time in the trenches for anyone.

Tai Chi:  My new line of work.  As a movement educator, becoming a Tai Chi Instructor with the Arthritis Foundation was a natural fit.  The two day training was stressful for me (I was the only one in my training class with RA) but I got through it.  I am about to launch my third Tai Chi for Arthritis class and so far, so good.  Now, if we can just keep me moving.  BTW, I really recommend Tai Chi.  It really does help!

The latest challenge:  Still dealing with joint pain and easily injured joints and tendons.  As a former athelete, this has been one of the hardest adjustments.  I simply can't do what I used to do.  Any overdoing on my part leads immediately to joint pain and inflammation.  I am still working on this one.  My rheumatologist loves to inject joints with cortisone.  I'm not so sure.  He injected my knees last fall but beyond the immediate post-cortisone high I didn't really notice much relief.  When I tell him that my joints hurt, his only response is to offer to inject them.  My hips are becoming increasingly painful, and I am reluctant to have an injection into such a deep joint.  So I booked an appointment with an orthopaedic doc and he has scheduled an MRI to check for the possibility of avascular necrosis from all the prednisone that I've been on over the past tow years.  Yikes! Once we get the go ahead from the insurance company for the MRI I guess we'll find out what's what and go from there.