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 liberating...now 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.
Nan

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!

Nan

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.
Nan

Mental agility and RA

          I am really zeroing in on the number three these days as I am about to embark on three surgeries in three consecutive months starting in April.  

    The first two will correct cataracts in both eyes, courtesy of the long term use of prednisone.  Turns out that even low dose usage (I currently take only 4mg per day - and have been for about 4 years) can impact the development of cataracts.  

     Having said that, I am in my late fifties (58) and they are not unheard of at that age irregardless of other diseases.  In reading about cataracts I have discovered that there is some valid research that supports the notion that not wearing appropriate sunglasses can hasten the development of cataracts, particularly as Earth's ozone layer shrinks.  So now I tell my sons to wear their sunglasses all the time!  

     Of course anytime I have to have a procedure I tend to study it to the point of absurdity...that comes from years of managing a chronic disease. I suspect that many of my RA friends out there do the same thing...just sayin...no judgement, just stating the facts.  The point is that I will come out of this with an implanted lens in place of the "cataract" lens and I will no longer need glasses for distance!!! That's right - after nearly 50 years of wearing corrective lenses I will be able to see the alarm clock from across the room in the middle of the night! Yippee!  The trade-off is that I will now need "cheaters" for reading most likely. I had hoped to get the implant that corrects for all distances but alas I was not a good candidate for that as I have Sjogrens  Syndrome and that combined with an astigmatism tossed me from the pool of folks likely to have success with it.  No worries though.  I am happy to be getting better vision back.  
     There are some signs of cataracts that those of us with RA and users of corticosteriods need to be aware of.  Without a doubt the worst symptom was the discomfort and distorted vision while driving at night into oncoming traffic.  

     For me this picture comes close but it was even more pronounced than this. Some folks see a blur, some halo's, but I saw a splintering/glare effect that was really horrible.  I live in a rural state where we primarily drive on two lane roads so oncoming traffic is the norm and that means that anytime I was out past dark driving I had to cope with compromised vision.  This symptom was the key reason I am getting the surgery.

     Another slow building but persistent symptom is the lack of clarity and sharpness with colors.  Clearly this is not pleasant and although it does not effect your actual ability to see, the truth is, that over time it really impacts your enjoyment of life.

     Additionally, having "clouds" or "fog" appear within your line of vision is another and often first sign of cataracts.  This photo shows it directly in the middle but in my case this is off to the side in both eyes and not quite this large an area...thanks goodness!

     Lastly, for me anyway, is the problem of looking into any type of light head on and having it literally block out whatever is in front of it.  The best example I can give is if you are talking to someone who is standing directly in front of a window and light is coming in..you can barely see the person's face and it is almost painful.
     So, all in all, getting this simple corrective surgery done will be quite a blessing indeed and I am actually looking forward to it!  I will blog again post surgery to update you on how the procedure goes, what, if any, RA medication adjustments I need to make before the surgery, etc.
     The third and by far most complicated surgery is the foot reconstruction I am having done in June, first on the right foot and later in the year, the left one. 

     I, like many of my fellow RA sufferers, have seriously compromised foot mechanics.  Not only from years of RA, but also from having lousy feet to begin with!  In fact, when the orthopedic surgeon looked at my xrays he was pleasantly surprised by the almost total lack of joint erosion, which was welcome news to me as well.  We both concurred that this was a real endorsement of the treatment and medication choices that I and my RA Support team have made over these last 15+ years.   That was the really good news....

     Then we got down to business about what this would actually involve and I quickly realized that this is a major challenge I am undertaking.  For me that instantly translated into 1) ask every question you can possible think of that needs answered 2) plan ahead for all contingencies 3) panic 4) now calm down 5) call everyone who is willing to listen to you talk about this and finally 6) reflect on how this will be a successful and positive step you are taking (pun intended) with good outcomes.

     I will have to tell you that despite being an upbeat person who usually is unafraid to take on a challenge no matter the size, this really did overwhelm me initially.  When I think back on it I think it was because I was naive about the aftermath and recovery more than anything else.  I did know what the procedure would involve (will share that in a future post) but I did not truly understand the limitations on my mobility short term (if you consider 8 weeks of no driving short term!) nor did I understand how long the recovery will be until I am able to resume normal activity.

     The point of this is that when you are dealing with RA and all of the challenges and "opportunities"  (AKA obstacles) associated with it, you have to keep in mind that flexibility, not physically but mentally :)  is absolutely critical to successfully managing chronic diseases like RA.  Don't misunderstand me, I had my moment(s) of self-pity and crying and still do.  That is an important outlet and quite healthy in my opinion.  What I am referring to is being "agile" mentally.

     If you can achieve the skill of adapting to rather sudden changes and/or unexpected barriers or obstacles it will serve you well in handling the day to day challenges of RA in all its glory!  Being resilient is a huge asset in dealing with RA and a wonderful tool/trait to add to our RA toolbox.  I have learned to refine this over the years and feel it is perhaps my greatest achievement in dealing with RA.  I encourage anyone with a chronic disease to explore strategies to enhance resiliency and mental agility.  

     I have no doubt that my belief that I can defy the odds like the flying cow pictured above is largely responsible for the successful and positive way I have managed RA for 15+ years and...I know it will get me through these next challenging months.  I will keep you posted.  

Nan  

chicken or the egg?

     Believe it or not this perennial question actually has applicability when it comes to RA, especially as it relates to pain and depression.  At first blush you may think that it is an obvious answer.  You may think, well of course, pain is first and depression follows.  Let me be clear that I am not talking about the day to day pain associated with RA that we all deal with.  Clearly when the disease takes  hold, pain is one of the leading symptoms and it occurs, in my opinion, before depression enters the landscape.
     That said, I recently read an intriguing article on the Mayo Clinic website by Dr. Daniel Hall-Flavin in which he explores this question and discusses if there is a link between pain and depression.  Here is the link to the article and I would recommend you check it out.
http://www.mayoclinic.com/health/pain-and-depression/AN01449 

In it Dr. Hall-Flavin really gets into the way these two issues can be "married" if you will (my term not his).  He relates how pain and depression can be a viscous cycle that can really spiral out of control if not kept in check.

     The result is that pain worsens depression and likewise depression intensifies pain.  According to the article, depression can often manifest first in the form of headache or back pain for instance.  And in fact, he stated that in some cases it may be the first and only sign of depression.  
     By contrast, pain can lead to lack of sleep, stress, emotional and mood problems.  One side effect of pain that I found particularly profound and common with RA is low self esteem over time that can come from work, financial and other personal issues that can arise from unending and disabling pain.  These are all elements of depression and yet we often overlook this in our drive to control the physical elements of RA.  

    So we need to attack this from a two pronged perspective that examines and treats both issues concurrently and perhaps even with the same treatment. For example, anti-depressants can help both pain and depression because of shared chemical messengers in the brain.  Psychological counseling can be effective in treating both chronic pain and depression.  Stress reduction techniques, physical activity, meditation or guided imagry, and journaling have also proven effective. 

     It may seem like there are just too many options and that can become overwhelming when trying to sort through the various treatments which can lead to a tendency to do nothing.  That personal paralysis needs to be addressed and resolved.  When I hit that barrier I find that turning to someone I trust from my RA Support Team helps me to get through that and move forward.  

     Knowing that there are people out there that you can trust to listen, advise, assist and care is, in itself, uplifting.  Sharing your choices, talking about the dilemma of pain and depression can go a long way in helping you to sort through the many options for treatment.  
     So, in the end the question of which came first the "chicken or the egg" "pain or depression" becomes far less important than understanding and addressing the link, once again adding to our strategies for managing RA.
Nan

birthdays and beginnings

     Having my birthday on a holiday like Valentine's Day and also having the last name Hart has been a very interesting conversation piece throughout my life.  It is a great way to share information about yourself in a way that often brings a smile to the faces of those you tell.  And I always like to make people smile....

     Nothing brings me more pleasure than to be with others and generate laughter, smiles, and a sense of joy.  So here I am, just a few days into my 58th year and I have been reflecting on the new beginning that each birthday gives to us...a gift if you will....to be received and hopefully used to its fullest in the coming year.  For whatever reason this notion has really struck me this year. Odd it has only taken 57 years to pass for me to come to some significant realizations.  I believe that many of them will not only change my approach to how I proceed with the rest of my life, but will help me in my management of RA. 

     Yes, indeed.  We need to be open to fresh starts and new goals forever!  Shooting for new heights to achieve gives our lives meaning and purpose.  Don't "settle" when you can have so much more!  If we do, we will simply exist and that is surely not the way I want to conduct my life.  And this is a message that applies to RA as well.  If you are not open to new goals (a little more physical activity for instance) you are not managing your disease in a way that will provide you with any degree of relief.  

By shooting for the moon you can land on the stars....a great place to be by anyone's standards.  I want to live my life in a way that says failure is not a negative but rather a lesson to be learned in an effort to accomplish my goals. 

     What would you attempt to do if you knew you could not fail? What a great question this is...think about that the next time you are trying to decide what to do in life.  This surely applies to RA management.  Just imagine if you knew that every time you opened your mind to a new treatment or suggestion for a way to better manage your RA, you knew it would succeed.  That would, without any doubt, make you much more open to trying them out.  Well, I am going to try to assimilate this into my coming year.  I want to consider that it will succeed and go from there instead of the other way around...which we have often been programmed to do.  I understand why....disappointments can lead to having that negative approach and to closing our minds off in an effort to avoid failure and the disillusionment that comes with it.  But...it also means that any chance of success is greatly reduced.  That is not how I am going to live.   

     The fresh start that each new year of my life brings is something I intend to celebrate.  It really is a chance to let go of whatever may have held you back and to explore new options.  I love the lessons the ocean teaches us and one of them is really simple yet quite eloquent.

     Just as the ocean tide each day sweeps out the "footprints" of the day before and leaves a beach untouched and new so we can start each day with a new outlook, wiping clear the "footprints" of the days prior, open to new adventures, new options, fresh beginnings.  Only then can we truly learn to manage chronic disease.  

    Seize the day has always been a favorite tenent of mine and in this new found time of reflection I now understand that it applies completely to RA management.  We have to learn to grab and hang on to each and every wonderful moment when the pain has subsided, when a treatment is working, when an experience presents itself that we can enjoy despite the RA.  Our lives will be so much better for it.

     Many times in the past I have found myself feeling sad as holidays unwind, my sons head back home, vacations end.  I have been trying to flip that around and not feel sad in those moments and this wonderful quote by Dr. Suess really presented me with the perspective I needed.  So as my next year of life begins, I will focus on the joy of those events, not crying because they are over and done, but smiling because the memories and joys of those times are so wonderful and with the knowledge that there are more to come.  Again as it applies to RA, I want to focus on the successes of the past year, no matter how few they may be, and take the positive attitude into my new year.

     I intend to live my next year knowing that I am braver than I believe, stronger than I often give myself credit for, and smarter than I may think I am sometimes.  With those new attitudes in place, it will help me to be confident in my ability to manage my RA, to advocate for myself when the need arises, and to find the right options for my own unique set of circumstances.

     A particularly tough one for me and for many of us with the body distorting consequences of RA, is the notion of not letting my body image get in the way of having a great next year.  It is difficult enough to age in this society of ours that has so little respect or appreciation for the aging body without throwing the body changing effects of RA into the mix.  I am resolving to work especially hard on this one next year.  I will do my best to "see" the beauty in myself when I glance in the mirror.  Funny how seeing a photo of myself from years ago, long before RA, triggers me to ask "where did that woman go?".  Well, the truth is, she is still there below the surface, wiser, more open to new things, less judgmental, more curious than ever.  That is what I will look for in the mirror from now on...

     And so as I start my "next year" I feel blessed with a new outlook that will allow me to "soar to new heights" and in so doing better manage my RA.
Nan