Wednesday, August 15, 2012

RA Ups and Downs

Rheumatoid Arthritis (RA) is one of those funny diseases.  It is an autoimmune disease that attacks the joints.  A person will appear perfectly normal and not sick in any way.

And then, a flare happens.  Swelling of affected joints can occur and the person with RA can barely get out of bed, walk, stand for a period of time, do minimal household chores, get in or out of a car, grocery shopping or other tasks that need done.  Unless a person runs their fingers over the sensitive joints in the fingers, toes etc., it hard to see or feel the bumps that are a by product of the damage.

Many RA sufferers hold jobs, teach, craft, ride bikes, dance, cook, clean and we all exercise like mad to retain motion.  Depending upon the severity of the RA, different users get relief from different medications such as Humira, Enbrel, Cimzia, Orencia, Remicade, etc.  Pain control can be predisone, Tylenol or something stronger.

Over the last six years I've learned a some best practices.
  1. Exercise every day, even if it is nothing more than walking.  It helps with the motion and pain.
  2. Take all medications as prescribed.
  3. Rest and try to get 7-8 hours of good sleep.
  4. Know when to ask for help, especially moving something, lifting something or getting something down from a shelf.
  5. Meet frequently with your specialist and maintain an open complete dialogue.  The RA doctor is your newest best friend or as my granddaughter would say "besty".
  6. Document when and why medications are changed including dosages.  I keep mine on a spreadsheet on my laptop.
  7. Ask if there are interactions with other medications and possible side effects.
  8. Participate in a national study, if possible.
  9. Interact with others who have arthritis, Lupus, RA, Fibromyalgia  or other autoimmune diseases so you don't become isolated and feel alone.
  10. Read everything and learn everything you can.
My challenge days normally mean, I cannot sit at my sewing machine for more than 30 minutes and only if my hands are working that day.  I want to sew up all of my quilting ideas and stash before I cannot any longer.  I've learned to read on a Kindle since holding a book is painful and awkward now.  I've learned that the heels I wore when I worked have had to find new homes, I can only get about well in flats or running shoes.  And if it zips up the back and my husband isn't around, it just isn't going to go out the door on me.  Pain management is an everyday job for someone with RA.  Some of us manage better in summer than winter.

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