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Sunday, August 2, 2015

There is a point to this...

     Over the last several months some unusual and interesting opportunities have come my way and as a result it has prompted me to consider where I am at in life and what matters to me.  All the while keeping in mind my need to manage and balance RA, work, family, fun, etc.  There is a point to this which I will explain and it is all about purpose.
     While carefully considering the options before me, I began to reflect on what each one offered and beyond that why would I consider any of them?  Through that process of reflection it became clear to me that whatever I am doing at any point in time if it has a purpose that holds meaning for me I am much more likely to embrace it, much more inclined to consider it.
     Over the years I believe that I have learned to appreciate and fine tune those skills that most align with my purpose in that moment in time.  So for instance, I enjoy community involvement whether it be serving on boards, volunteering on a variety of projects or simply helping others in some way.  This practice has always been very tied up in how I live, be it work or home.  My purpose feeds that sense of contentment that comes with doing what you love and making that a guiding principle.  So when I was diagnosed with RA, I knew that in order to manage it and move past the overwhelming notion of a progressive, painful chronic disease, it would be necessary to find out how it "fit" into my life's purpose in a way that I could deal with.  
     I can say with certainty that handling and coping with some of the tragedies that have come my way has pushed me to refine what the meaning of life is for me and what purpose I have in it. RA is just another example.  I was not content to simply treat the disease, I needed more, I needed purpose. I truly believe that is what led me to launch and facilitate the RA support group in our city.  Another example was discovering Tai Chi and what an amazing form of meditative movement it is - leading me to get certified to teach it and to start a class.  Sharing my own journey of RA through this blog and other writing opportunities was yet another way to find that meaning in my life.  
     I know without a doubt that discovering the purpose in my life and engaging in activities that support them, be it my work, my recreation, my family life, volunteering, etc. has improved how I feel physically and mentally.  When you are excited to participate in each day of your life, your body and mind sense that! 

     Keep in mind that there is no need to limit yourself.  The sky is the limit in finding purpose.  In addition, your meaning and/or purpose may and likely will change as you move through life.  As a young woman my purpose was centered around my family and raising my sons.  I loved and embraced every moment of it, knowing full well that the time would come when I would need to find a different purpose.  They are all grown up now and although they surely are still a part of my purpose, they have moved beyond that day to day need for guidance and attention.  So, I had to move beyond it too.  I had to take some time to examine and reflect on what was next?  Where would my wings take me now?

     Being flexible in sorting out meaning and purpose is a key as well.  Taking time to consider your own needs, talents, desires, skills, etc is crucial to finding your own special meaning.  And you have to be a bit fearless...
    Listen to your heart and not those cautious little comments that sometimes creep into our mind in the middle of the night.  What harm is there in trying something new and different?  Even if it does not work out, you will have learned some very useful lessons! Explore what you might enjoy, try listing the areas of your life and then considering those areas that are the most satisfying. 


          Once you zero in on that you are well on your way.  And don't be discouraged if it does not happen quickly.  This is a process that takes time and reflection.  Don't give up. Don't give in.  This is your life, your time to find what holds that special meaning for you. 
     I am 100% certain that discovering my purpose was the key to a satisfying life.  It proved to be a magical and unforgettable moment and is the guiding force I live by today. 


Sunday, July 5, 2015

Which came first - the chicken or the egg?

     I cannot help but consider this age old question at times in terms of RA and the surrounding circumstances.  For instance I know lately I am feeling so much better and even though I am enjoying this new state of better health I can't help but consider all of the potential reasons and try to determine what accounts for this good fortune.
     I consider this mostly because I know from past experience that as much as I hope this lasts for the rest of my life, that is unlikely, given the serendipitous nature of RA.  Which is precisely the dilemma.  I often say that if I could figure out the formula for this current state of well being I could go back to it when times are not so great.  If there were some road map that clearly told me what to do, when, where, etc. I would be good to go forever!
     The fact is I do know what to do and what goes into healthy living.  It is hard not to be aware of that in our world today.  We are bombarded with all kinds of information and it is overwhelming at times.
     I try to remember and recall all of the components necessary to ensure that my health stays on a good path. What do I need to do each day, every day to stay on this path of wellness?  

     If I think of health as a circle of elements, each with its own set of suggested strategies maybe I can simplify this process.  If I look at each element and try to consider if I am being careful to attend to each one will that be the answer? Perhaps but the chink in the armor comes when you throw into the mix a little something called chronic disease.

     I am currently doing great on the particular treatment protocol I am following but just as night follows day so can my level of control of RA go from light to dark in an instant. RA has a mind of its own and even when all else seems to be going full steam ahead it can stop you dead in your tracks.
     I sometimes find myself not even relishing in the moment of healthiness I am experiencing because the past has taught me that this may be short lived and so I better not get too accustomed to this or I will be disappointed yet again.  
     Well, this pattern needs to stop and I am going to try my best to see that it does starting now!  I may not be able to control my disease most of the time (any in some cases) but I sure can try to control how I handle that and most importantly how I deal with the areas I CAN control.  

     I can control my own thoughts and attitudes and I can continue to educate myself about what makes up "good health" in all its glory.  Life need not always be about the RA and the chronic disease I live with but rather it will be about how I live with joy and passion and success.  
     No matter if this works or not I at least can say I did the best I could at that point in time and I have nothing but certainty that it was the best choice for me when I made it. So whether it was the chicken or the egg makes no difference as long as I am in tune with my own choices. Whether it be my treatment, my exercises, my diet, etc. I want to have no regrets.  If I can do that, I will be content and satisfied. Works for me!


Thursday, June 18, 2015

Making progress

     Although I am feeling the need to knock on wood when I say this, I do believe I can safely declare that I have made real progress in the last two months towards feeling better!
     Don't get me wrong, I am still very much in the improvement stage as it has been a long few years with various surgeries, treatment alterations, etc. but I believe I can see the light at the end of the tunnel!
     The key is to never loose hope that circumstances will get better.  Of course that is easy to say, not so easy to assimilate.  Particularly when you are wrapped up in the pain, fatigue, stress, etc. that is the reality of RA.  I surely did have times when I began to wonder if I would get past the latest hurdle thrown my way.  
     But somehow during those times, maybe because we have been there before, we dig down and find that strength, that voice that says it will get better. Or maybe it is the support systems we have nurtured for ourselves. 

     Having people around who remind us of the possibilities and can see beyond the current stressors is immensely crucial to our progress.  They can help us see beyond the moment to what can and will be in time.  
     I am not the most patient individual and so I need to constantly remind myself that any step forward is progress no matter how fast we take that step. Fortunately I am in a place currently that has me seeing that progress and feeling really good about it!  I am back to regular exercise, always a critical part of progress for me.  My current medication regimen seems to be working adequately which means that stress is alleviated for now. Flares are manageable and not as intense or long lasting, also a blessing! Other issues often associated with RA seem to also be taking a break.  All this adds up to me feeling pretty darn positive and content at the moment.  

     I find myself appreciating the simplest joys again.  Walking my dog in the early morning light and seeing the beauty of the day starting to unfold and being able to truly embrace that moment is such a delight!  Lingering on my back porch, listening to the birds and reading a great book are times I treasure!  Sharing a nice dinner and a movie with my wonderful husband holds renewed joy and fun.
     So I will re-visit this post from time to time when the light seems to dim and hopefully it will sustain me and move me through the darkness once again into the light of better days!


Friday, May 15, 2015

The case for Tai Chi

     A little over two years ago I had the opportunity to take a Tai Chi class and I was thrilled!  I had been trying for several years to find a class in my area after reading about it's benefits and obtaining Dr. Paul Lam's Tai Chi for Arthritis instructional DVD. 
Not only did it meet my totally obliterated them!  I had no idea how much it would change my life for the better in so many ways.
     I had a vague awareness of the benefits of Tai Chi - better flexibility, increased strength, a sense of tranquility and peace. All of these are certainly a core part of the practice. Beyond that however I was not really in touch with the more nuanced aspects of Tai Chi and how closely they are related to managing RA! 
     First up, mindfulness. For those of us with RA, being "in the moment" is not only difficult but sometimes not even where we want to be depending on the that moment! I have discovered though that immersing myself in the experiences, feelings, sights and sounds of the moment not only keeps me grounded but actually clears my mind and improves my judgement, disposition and functioning. 
      And...believe it or not, that translates into less discomfort and better management of my RA! I know what you are thinking and I was skeptical too but I am telling you that since I started to practice Tai Chi in earnest (not just hap haphazardly) I am feeling better in all areas of my health. I believe that by practicing focus and mindfulness in the truest sense you are more informed and better able to cope with RA.
     Stiffness is a huge issue with RA. The gentle continuous movements that are integral to Tai Chi have really reduced the discomfort of joint stiffness for me! By strengthening the muscles and allowing for gentle range of motion in my joints Tai Chi is responding to that issue. And by using those joints every day through the practice of Tai Chi I am keeping them working without overworking them which is the balance so necessary for true RA management!  
     Balance can be a serious problem with RA thanks to pain and stiffness and joint erosions in our feet, hips and knees. Tai Chi, as an integral part of the practice, involves learning proper weight shifting and being mindful and fully aware of where your body and your limbs are in space!  This simple concept has been a true epiphany for me.  Now as I go down steps, turn corners, walk my dog, etc. I am conscious of how I shift my weight. As I practice Tai Chi more and more I am finding that it has become second nature to me now to properly shift my weight meaning better balance and a far less likelihood of falling - a huge worry for many of us with RA.
     There is an energy shift that happened almost beyond my realization once I became a regular practitioner of Tai Chi. Over time, RA drains our energy until we find if difficult to do so many of the things we enjoy in our daily lives. Tai Chi gave that energy back to me!  Perhaps it is the meditative way you practice Tai Chi. Perhaps it is the simple yet focused movements. Perhaps it is the exercising of joints not used to such purposeful yet gentle movements. I believe it may be all of these.  Regardless I have more energy now then ever before.
     For so many of us with RA sound and painless sleep is a rare blessing at best and an elusive dream much of the time. Since practicing Tai Chi I am finding that I have many more "good sleep" nights than in the past.  I attribute that to the many benefits I have just discussed like tranquility, better body mechanics during the day translating into less "angry" joints at night and the fact that when we move our bodies during the day they reward us with a better rest at night!
      One of the most wonderful side effects of any exercise is the improvement in our temperaments.  Without a doubt, I am a much more pleasant, contented and overall happy person when I exercise.  I have known this for years and it is a key reason why I truly crave some form of exercise in my life. 
     I don't want to forget breathing and the fact that through the practice of  Tai Chi one becomes more aware and mindful of one's breathing which in turn means better health as we all know.
     So hopefully this post about Tai Chi has, at the very least, made you curious to check it out and, at the most, made you want to run out and join a class!  I recently got certified as a Tai Chi Instructor and so I am thrilled to be able to not only practice with others but teach them and share my passion for this wonderful movement practice! Maybe I will see at a Tai Chi class somewhere in the future.


Monday, April 6, 2015

Is it Spring yet?

     So without a doubt this has been one of the most severe winters I have experienced while living in New England.  Not only from a snow and ice perspective but also it was sooo cold this season!
     I have always been one to embrace whatever season we are in.  It is one of the many reasons I could never live in a region that does not have 4 full seasons.  I truly enjoy the change in climate and landscape that each season brings.  
     So this year I expected to feel no differently.  Wrong.  I found myself truly dreading getting up and going out some days.  The prospect of facing another bitterly cold day filled with icy and/or snowy conditions was just overwhelming at times.  So why did it bother me more this year than in the past?
     I think it may be related to age and RA.  With age comes some fears associated with ice - falling being the one that terrifies me the most. I have witnessed far too many folks that I serve suffering a catastrophic fall that sadly puts an end to their independence (if not their lives).
     The fact is our balance is compromised as we age.  Add to that the effects RA has on balance and it can translate into a paralyzing fear of going out in the winter.  I have to say that fear has been slowly building for me over the last decade and now that I am 61 it has really blossomed.  And of course this winter we had record snow falls and the cold temperatures led to more ice than usual as well. 
     We went two full months without the temperature getting above freezing this winter!  So all told it added up to a less than enjoyable winter and one I am so glad is ending, making way for spring.  One thing I have noticed is that as we move from one season to the next my RA seems to react. Having had this disease for nearly 20 years now and therefore 80 seasons, I can say with some confidence that as we shift from one season to the next, my RA also seems to "shift" right along with it.  I find that I am much more likely to flare during those shifts.  Often when I look back on the times my medications have begun to fail, it often starts at the launch of a new season.  I am not at all sure why this is but I have speculated.  Could it be because our bodies are already coping with the need to adapt to new temperatures thus placing it in a compromised place? The perfect environment for RA issues to rear their ugly heads.  I wonder too if it could be due to the increase in colds/flues that accompany the change in seasons.  I have had three colds this past year, each one as the season shifted.  That really speaks volumes to me about the challenge of coping with season changes.
     All that said, I simply cannot give up the beauty of 4 seasons.  We hope, in retirement, to move to a more moderate climate, perhaps back to the mid-Atlantic region. But I cannot give up the beauty of summer, fall, winter and spring.  I have chatted with others who live in a consistent climate and to be honest aside from the things I mentioned I don't think there is a significant difference in the severity of symptoms of RA.  
     So as I sit and gaze out my window at the final days of winter and the early stages of spring it makes me once again feel gratitude for the beauty of the 4 seasons and our decision to live in a part of the world that affords us that option.  Wherever you live and whatever climate you are in, embrace the beauty that surrounds you.  


Thursday, February 5, 2015

How low can you go?

     I can sometimes predict when I am going to have a bad day.  Like when coping with RA - the pain, the fatigue, the brain fog, the sadness are just too much and I dissolve into tears easily.  Or when trying to put on a brave front and keep on smiling just gets to be too much.  Other days it seems less predictable.  Today is one of those days.  
     I have been struggling with several issues with my RA for several months now and for whatever reason today it is all hitting me.  Usually I can smile my way through the day and by doing so it keeps me from falling apart or giving in to the sense of hopelessness that sometimes creeps into my mind when I least expect it.
     I can respond when someone asks me "How are you?" by saying "Fine" even when I am very far from fine.  But people really don't want to know the answer to that question.  Most times we ask it as a greeting and not to check in with someone's health and well being.  So I never say "Well actually I am feeling really lousy today thanks to the ever present pain and other issues surrounding my RA".  Really? They would run as far and fast as they could! So I don't.
     But the fact is I am feeling very weak and beaten at the moment.  I usually get some sort of break from the pain, etc. but this time it has been fairly non stop and it is breaking me down day by day to the point of feeling weak and hopeless. I am venting here because writing down what I feel has been a safe and helpful outlet in the past and I am sure hoping it does the trick again this time!  Time will tell.
     These are the times frankly that I have to almost let myself accept the sadness, hopelessness, etc. so that I can start to find my way again.  I have to remember that it is OK to feel these emotions from time to time.
     I used to think that immersing myself in these emotions would just make it that much worse and, to be honest, I was, and still am fearful that if I fall too deeply into the hole of sadness, etc. I may not be able to get back....that really does haunt me.  
     But the fact is that if you hold all those tears inside you very well may drown.  Even though I know this in my mind, I still find myself trying over and over to not acknowledge it.  I know why....because once you let those emotions in the door, it means you have to move forward or sink deeper.  By holding them at bay as long as I can I somehow convince myself (subconsciously) that it will pass and there is no need to revisit the sense of helplessness and hopelessness that is such a part of the RA picture. 
     So I am going to give myself permission to have a good day or two or three to just let those emotions surface because in the end that fear and helplessness will give way to an opportunity to be brave and fearless once again.
     In time, and it does take time, good thoughts will hopefully fill my mind to replace the discouraging ones that come to visit sometimes.  I want to KEEP GOING for me, my family, my friends, my co-workers, my community, etc.  
     I have to reach out not just when it reaches a crisis but long before that.  I have to trust that my family and close friends will be there to prop me up when I need it.  I tend to not want to burden others with my issues but there is a fine line between relying on others and sharing when you need someone to listen or help out.
     It has always been important for me to remain independent and I think that is the scariest part of a disease like RA.  It can rob you of that freedom and I live in terror of that becoming a reality.  I know full well that the specific RA road that I am on is different than anyone else's so I have to be the one to forge my own path and make that journey in the best way I know how!  But that also means looking to others to help me "map out" that journey and provide me with the necessary "supplies" along the way.  
          If I can run these thoughts though my mind almost like a mantra then that gives me hope that things will get better, that I will see improvement and this flare will subside, the fatigue will fade and postive thoughts return.
     I will carry HOPE in my heart in these coming days because if I can believe that Hold On Pain Ends I just might be OK.