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Tuesday, June 14, 2011

One of those days...weeks...months...

     After reading about the passing of a thirty something year old RA sufferer who's blog I had not had the pleasure of following but have since checked out (RA SuperBitch), I have spent some time reflecting on a few things that have recently struck me....
      I have decided to openly acknowledge that I don't seem to do very well at expressing my frustration and anger at having RA.  Not sure if this is good or bad, just sayin, I read other's posts and often they are filled with wonderful, righteous anger and I wonder why I struggle with that.  Is it my German ethnicity (but I am also Irish so it could either way!) - that stoic type that does not do well with expressing strong emotions of any kind, or maybe I just cannot truly accept the reality of RA?  Is it that I want to move on and not let it consume me?...even though I have days where I am so sad and just cannot quite put my finger (painful and crooked I might add) on why.  Could it be that I am fearful that if I go into that place of self-pity, however well-deserved I KNOW it is, that I will not get out of it? Or is it that I am really terrified that if I express it that others will not listen, truly listen to my tale and instead will reject me...I have never been very confident about myself socially so it is not a leap to assume that having a disease that not only negatively effects your health but also your appearance would limit your appeal to others beyond the current situation.  I wonder if it could be that I worry that if I submit to the sadness and anger it would limit my ability to continue with my professional life and the demands and challenges that are so much a part of it...parts that I treasure and that give my life meaning and satisfaction.  I know I worry that my family and friends would react in ways that I am not sure I could survive.. What does that mean exactly? Well, I hate pity, despise it in fact because it leads to lower expectations and it means giving up and giving in and feeling worthless and useless and a burden and no longer a vibrant, caring mother, wife, sister, daughter, friend, co-worker...and that would kill me.  It is that simple, clear and defined for me. 
     Staying positive, finding the joy, dragging myself out of bed (literally at times), swallowing the pain and the anger and the grief can be a good thing!  I know that because 99% of the time it works for me.  I just need to figure out how to embrace the other 1% and let it be OK to vent and to share and to let myself be sad in a guilt free way.  I thank all of the wonderful bloggers I have recently read, including RA Guy and RA SuperBitch and all the others. There courage and ability to so articulately express the feelings I so often bury has been so liberating for me I am at a loss to truly convey its impact.  I can tell you that I am typing this with compression gloves and wrist braces on AND it really pisses me off that I now need to, once again, move on to a different medication because the one I am on is failing again (this will be the 5th one) and each time this happens I struggle to stay ahead of the pain, fatigue, and yes, the depression, that comes with it. But guess what?  I will do it! Because I am not ready at 57 years of age to stop the fight...I want to see all of my sons settled into a wonderful life, with rewarding and satisfying jobs, spouses and children and happiness.  I want to retire somewhere really wonderful with my amazing husband so we can do all the things we love together and enjoy our sons and their families, my brother and extended family members and our friends as well.  I cannot do these things if I succumb to the pull of anger and grief and sadness that at times tug relentlessly at my mind and soul.  I know that with the strength that I get from my "support team" I can do this and do it while also allowing myself the necessary outlet of expressions of frustration and sadness and anger that are, I now realize, just as much a part of managing RA as any other component.  In fact this may be the most important lesson yet for me to have learned.
Nan

2 comments:

Anonymous said...

Nan, I know you can! BTW it is not so bad when you feel sad and cry because of you condition it is human nature to question WHY? Why me? I can speak for all your friends and family that we all love you so much and we are here for you. Anytime... Hope you can choose Sarasota , Fl to retire.. I want to walk on the beach, when we are old and gray.. ( maybe not gray...) with you, Richard and Jay and remember the fun we always have and had with our children, and perhaps grandchildren.

deb aka murphthesurf said...

You go ahead...rant, rave, scream at the top of your lungs with rage, fury at the injustice of it all. After all has been said and done, you will feel better for it and I for one will be listening, waiting to welcome you into the fold of support and empathy. Yes, once in awhile this is needed and it is good.