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Friday, May 6, 2011

Handling the unpredictability and fear

     So once I had carefully sifted through the options and chosen my treatment protocol in collaboration with my Rheumatoligist I naively though that I was all set and it would be smooth sailing from there on out.  NOT. Without a doubt one of the biggest challenges for me relative to the management of RA, is the unpredictability of the disease and the fear that comes with that.  
     A word that is often used in RA to describe the periods of disease activity is FLARE.  That is a word that has become a natural part of my vocabulary since the onset of RA.  A flare means that your RA is rearing its ugly head and has decided to make itself known once again through joint pain, swelling, inflammation, fatigue, etc.  But here is the kicker:  Despite medications which certainly curtail them I still get flares...they come unannounced and often with no warning. 
     So early on I literally lived in fear of having another flare each and every day as I woke up and went about my daily life.  As a type A, highly organized individual, I found this level of randomness terrifying.  I like to plan ahead, know what is coming, and have control over as much of my life as possible.  Along comes RA and POOF! Gone is my sense of control and security in knowing how my life would proceed and most of all the calm of a good nights sleep leading to a feeling of peace and renewal when I awoke.  
     I literally walked around in fear and a heightened sense of awareness of my movements, joint discomfort and overall sense of well being 24/7.  Well, clearly something had to give or I would not have been able to keep this up without suffering some sort of breakdown, both physically and mentally.  Now, I know and can share with people that having these feelings is very normal and in fact, part of the process of accepting and moving forward when faced with a chronic disease that has periods of activity or flares.  
     In fact, I think acknowledging these fears, sharing them with your doctor and support team (family, friends, etc.) is critical to managing RA.  I think I struggled the most with this because of my own personality and my initial unwillingness to re-define myself as someone with RA and all that entails. 
     Once I came to terms with it (not easy but time, tears and tantrums are OK) I knew I had overcome one of the biggest challenges of RA.  It was such a relief to finally accept that fear of flares and the changeable nature of RA is OK.  I just  needed to turn it around and use it to make me be more careful and deliberate in how I moved, exercised, and generally dealt with the daily living activities I took for granted before RA.  
     I now paid attention to all kinds of fine motor activities that I did without thinking before, like cooking and gardening.  I had to think about gross motor activities now like tennis and running and whether I could continue to do those things.  So deliberations began and through trial and lots of error and flares I figured it out!
Gently hugs and lots of laughing!

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