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Monday, April 23, 2012

RA CAN be beautiful!

“Everything has beauty, but not everyone sees it.” 

― Confucius

     This quote has so many nuances that apply to our journey with RA....first of all, as cliche as it sounds, beauty is in the eye of the beholder.  I am not sure I ever truly embraced this concept until the last few years.  I like to think I have always understood its meaning and believed it was true...but...RA and aging and the wisdom that has come with both have certainly driven home the truth of this statement.
     Perhaps this new found appreciation comes from some recent experiences that have sharpened my understanding.  I recently had eye surgery and had to go without my makeup for nearly a week.  Now I know this may sound trivial but bear with me here.  It will all make sense.  As a result of this need to go without make-up I assumed I would feel ugly and not want to go out of my house and that somehow I would not be "me" until I could wear it again.  At one point during this time, my wonderful husband said to me "I am getting used to you without all of the eye make-up and it looks kind of nice".  Frankly, I was stunned since I thought that he would think I looked unattractive without my usual mascara and eye shadow and eye liner.  

     I have worn make-up since junior high school.  I even had make-up on for all three of the deliveries of my sons!  I would not go out without make-up unless I had absolutely no choice - translation - never!  That said since the eye surgery I have to put 3 different eye drops in 4 times a day so that can really wreck havoc on eye make-up!
      Add to that the need to still work and go out into the world and I had no choice but to bite the proverbial bullet and venture out sans eye make-up.  Well, to be honest it was somewhat not to the extent that I will no longer wear eye make-up but maybe I will be less obsessive about it in the future.  My point about this specific situation is it gave me pause as to my own perception of what my own "beauty" meant.  Is it tied that completely to my own outward appearance and my very specific ideas or is there room for differences in how my beauty manifests?  If I am not at XXX lbs. does that make me unattractive?  and to whom?  If my hands have become distorted from the ravages of RA does that make them abhorrent to others?  

Why do we not see these as badges of a well fought battle to be admired?  WOW, I suddenly realized that these definitions of beauty are self imposed sometimes and that is something maybe I can control.
     A much tougher nut to crack are the notions that society has imposed on us as to what constitutes beauty.  A quick look at the magazines on the newsstands will give you a good overview of what our society thinks is beautiful today and it is not only nearly impossible to achieve but I believe it is shallow and sad.  In fact, I think we often equate beauty with being a kinder, "better" person.  As Tolstoy put it, "It is amazing how complete is the delusion that beauty is goodness".  Instead of appreciating the amazing and unique look that each of us brings to this world we have decided that there are certain things necessary to be considered beautiful...1) be as skinny as is humanly possible whether it is healthy, attractive, achievable or not.  2) follow the fashion trends set forth for this same population of overly thin people whether you look good in those clothes or not.  3) do nothing that makes you look unique or individual as fitting in and following the standards of beauty is the only way to be considered attractive.
     The end result of this is a population of people who are constantly striving for some random idea of beauty that has no basis in reality and no respect for the individual differences we all have.  We need to cherish those differences not demean them.  Is this easy?  Absolutely not!  We have all been programmed to perceive beauty in a very defined way....
...and yet if we truly embrace the notion of "beauty is in the eye of the beholder" we will "see" beauty in all its many forms.  That said, the effects of RA and other diseases that change our body in ways that may not be conventionally attractive could actually be seen as beautiful in that they represent the will and strength and management required to cope with RA.  If, as a society, we can learn - and it does take learning - to truly appreciate what is beautiful we would surely have a much more lovely, diverse, joyous life experience.
     And above all, look to the inner soul as Ms. Hepburn suggested to find the true beauty that we each possess.  
    I have discovered that I now smile when I see someone who may not follow conventional standards of beauty but who walks with confidence and self-assuredness in who they are.  That is truly beautiful to me...and something I strive to achieve as I journey through life.

Tuesday, April 17, 2012

Time to renew!

     This time of year brings with it a sense of renewal thanks to the budding landscape that I see each day.  I truly feel a sense of starting fresh in the spring.  I guess it comes from the end of winter and the feeling of hibernating that has come to an end.
    I really am one of those folks who loves all the seasons of the year and I think part of the reason is that each time a new season begins it gives me this sense of renewal that I think is really helpful when it comes to managing RA. How? First of all, whenever you "start something over" it offers you an opportunity to take stock of where you are in your journey with RA.  That means you can examine the various components that need "renewed" every so often.  For example, pull out that medication list and make sure it is up to date.  Have you done or considered an Advanced Directive or Living Will?  Might be time to take that step.
When did you last see all of your various medical support team members?  Check on those appointments and make the ones you need to.  With spring comes the opportunity to do some new exercises that can include the outdoors after a winter of being confined.  Try something you have wanted to do but maybe were reluctant to try in the dead of winter.
   A walk on the beach is one of my favorites!  The feeling of getting outdoors can be so liberating after being indoors for several months.  Not to mention that daylight stays with us well into the evening now giving us more chances to enjoy  being outside, soaking up the sunshine and getting that much needed vitamin D that is so crucial to both our physical and mental well being!
     Another opportunity that this time of renewal offers is taking stock of your environment and how it works for you and not against you.  Do you put safety first in your home?  That means safe flooring, safe lighting, etc.   With RA, having a home that is a haven and not a hazard is crucial to your well being.  This is a good time to examine your residence and make sure it is a safe and "user friendly" place for you.
One example is night lights.  Many of us with RA get up several times during the night to move our joints around to ease pain and stiffness and/or make that necessary trip to the bathroom that seem more and more frequent as I age!
I have night lights placed all along the path I take and in various room throughout my house!  This is a good time to stock up on them so you have them in case they stop working.  They do have a shelf life!
There are some really charming ones out there but be sure they illuminate the path well.  That is the most important role they play!  I have a really cool one in my hall bathroom that has an aquatic appearance and many colors alternating and it is so fun to look at!
     What about gardening?  Is there anything more wonderful than spending some time outdoors digging in the dirt, planting whatever catches your fancy be it flowers, vegetables, etc.?  I cannot do what I used to do in this regard but I sure can still put out my flower boxes now filled with silk flowers and plant real ones in my hanging baskets.  And I love to go outside and walk around my house and see all the flowering shrubs and perennial plants coming back to life.  Spring really is a time of fresh starts and new life.
     We have a rafter on our lower deck that has been a home for a bird's nest for over 20 years.  Each spring a new mother and her babies make it their sanctuary for a time.  We get to enjoy this each year and it is still touches my soul each time I watch and hear them.  A different family inhabits it but is serves them well year after year. What a lesson in "starting fresh" this is and another chance for me to reflect on the beauty of renewal.  I hope you take the time this spring to "take stock", start fresh and smell the roses of your life!

Thursday, April 5, 2012

One Step At A Time

     Well, step one of my surgery journey is complete!  I had the first cataract surgery done this week and I have to say it went fine despite my anxiety.  It is still too early to declare that it is a complete success but all the signs look good.  I am a bit gun shy about avidly saying that it is 100% successful since my numb mouth episode last summer!
     That said, all signs point to it being a success.  One really big lesson for me that is unfolding throughout this process of having several surgeries in fairly short order is that despite my resolve to plan so that I can essentially eliminate all anxiety, that simply is not the case.  
     Not sure who this author is but I love the title of her book and could not resist starting my discussion with this aptly titled book.  I am one of those people that believes the better prepared you are for what lies ahead the better you will be able to handle it.  Well that is all well and good but there is only so much you can plan for and inevitably reality is often a bit different than what we anticipate.  Stepping into the unknown can generate a lot of anxiety and I am living proof of that!
     I was sure that I knew every step of the way what the eye surgery would entail, fooling myself into believing there would be no surprises...not true.  It is virtually impossible to anticipate every possible step along the way when you are having a medical procedure done.  That is a fact that I now accept and hope it will guide me through these next several surgeries.  I am hoping that fully embracing that fact will make me less anxious as the "surgical surprises" unfold.  
     As I was chatting with my son last evening he said to me that the way to approach these surgeries is to plan for what you can, understanding that you can only do so much in advance.  Then once you are home and the surgery is over, realize that each day that passes is a day closer to full recovery.  That was so simple yet profound I was in awe of his insight. 
     He is just coming off of leg surgery that has had him on crutches for nearly 10 weeks so he speaks from experience and I listened intently to his advice.  He seems to have a way of relating to my circumstances with a compassion and wisdom that far exceeds his years on earth.  All of my family members contribute to my ability to manage RA and I hope that others have that same support.  It is crucial to my chronic disease management.
     Another lesson learned was to allow myself some "time off" from the day to day responsibilities.  I tend to get right back on the horse as I don't do well with disruption of routine.   I think that is a direct side effect of the fact that RA manifests in exactly the opposite way...that is it is a constant unknown, always changing, never allowing a moment of constancy.  As I have said many times in my blog that is the single most disruptive, difficult aspect of the specific chronic disease of Rheumatoid Arthritis.  The Change Meter is always set on high for those of us with RA.
   That is a challenge that seeps into every decision, plan, action and reaction that we have in our lives.  Given that, it really explains why we try so hard to regulate other areas of our life, like surgery prep., for instance.  I think unless you truly can put yourself in the shoes of an RA patient (and why would you 'cause let's face it our shoes are NOT comfortable!) you cannot really appreciate what I am talking about.  
    So, knowing that about myself, I realized that I cannot expect that routine I so treasure to offset the inconsistency of RA to be without some disruption now and then, especially as a result of surgery!  I gave myself permission to stray from the routine this time and it has helped me to better heal, cope, and hopefully move on to the next surgery with less stress.  If I achieve that than I have added yet another tool to my bag of RA management tricks and that is always satisfying.