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Wednesday, May 4, 2011

Reaching out to others is really difficult....but so worth it!

     Not to long ago, it was fairly easy to identify someone with Rheumatoid Arthritis.  There were distinctly misshapen hands and feet, often stooped posture and a cane or wheel chair were part of the whole "look".  Nowadays, thanks to the medications and treatments available, we are a less distinctive looking group! 
     Today's treatments can delay, postpone and maybe even prevent the disabling erosion of  joints and the accompanying appearance.  So that is the really wonderful news.  But, RA is still characterized by pain, pain and more pain as well as fatigue and depression which others may not "see" but is still there, silently invading and impacting our lives.  
     As time has gone on, there has been more and more evidence of the disease for feet are...lets just say...not pretty....I have some RA nodules scattered around and my wrists have some lumps and bumps.  One of the worst things about my new "look" that I really despise is the weight gain that came with the prednisone use and really has never entirely gone despite diets, exercise, etc.  Add to that menopause and it really gets ugly.  For me, that is one of the most difficult aspects of RA.  I never, never, never, had to worry about weight as I was always active and a type A person that never stops moving.  RA changed all of that and I still hate that I can only have a granola bar for breakfast, an apple and yogurt for lunch and MAYBE a salad for dinner or I gain weight never mind loose any!  I am not giving up but I have lost and regained 20 pounds probably 4 times in the last 5 years and I hate this roller coaster ride! 
     So, dealing with diet is another one of those issues with RA that kind of sits in the background but is there nonetheless and venting and talking to someone else who knows how you feel is really important on so many levels.  
     First, knowing that someone else can completely relate to what you are dealing with is priceless, emotionally and otherwise. 
     Second, the wealth of information sharing that can occur when you talk with someone else in the same "boat" is tremendously useful.  
     Third, knowing you are NOT ALONE in this battle and that there is someone you can call, vent to, get advice from, is such a comfort there are no words to adequately describe it.   Family and friends are crucial too and their support is worth another whole blog post but they cannot imagine what you are experiencing and so there are times when you get frustrated.  
     So if you can find an RA Support Group in your area give it a try and go!  I am really excited to be starting one here after 15 years without that!  I know that it has the potential to be a really important link in the management chain we all need to deal with RA long term.
Hug a loved one today and remember to smile and laugh!

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