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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!

Nan






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 expectations...it 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.

Nan  


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.  

Nan

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.

Nan

Wednesday, January 14, 2015

How to work out when it's not working out

          I am going through a very frustrating time right now around working out and the fact that at the moment my attempts to do so are NOT working out.  One of the many issues that those of us with chronic diseases like Rheumatoid Arthritis face is that despite knowing how beneficial it is to workout AND having the desire to do so, our bodies are not always so cooperative.  We hear from virtually everyone in our lives that exercising is the key to longevity, good physical and mental health, etc.
     I GET IT!  I really do.  But the reality of RA is that because we live with a disease that flares with NO RHYME OR REASON or rationale our best intentions can be dashed in a moment.  A moment you say?  Yes.  
     People with RA can literally be getting ready to head to the gym, pool, etc. with every intention of exercising and when they get up to move their _____ (fill in the blank with any joint) they experience pain, swelling and limited mobility.  It happens to me over and over and over.  I swim.  I prefer early morning for a variety of reasons.  My routine is to get my gear ready to go the night before so in the morning I just throw my bathing suit and warm ups on and head out the door.  Far too many times lately this is simply not happening.  I get up and this hip or that shoulder or this ankle or that wrist or all 4 are saying "nope, not today Nan".  It is so very discouraging.  I want, no need, so badly to exercise.  It is what gives me energy, a clear head, better sleep, weight control, etc.  Without it I am none of the above! I try to tell myself it is OK I will do it tomorrow but that is getting old and so am I!  I need to find a way to get through this.  More medication is not the answer...tried that...it just gives me more problems with its various side effects.  I have been on dozens of them at this point and although I am under moderate control....
....the reality of RA is that unless you are in remission you WILL FLARE! It is that simple.  I have said here repeatedly that the single worst aspect of RA is its chaotic nature.  Never knowing when the pain, swelling and overall discomfort will strike without any apparent reason. It is that complete lack of control and being at the absolute mercy of this master, RA, that makes living with this disease so challenging on a daily basis.  Living with this disease for over 18 years now you would think I would be able to adjust to this and move on....well not true.  I think it is simply in our nature to try to establish control over our lives and so when you are continually hitting a brick wall when it comes to RA management it makes one weary, frustrated, depressed and discouraged.  I have to try to find a way to get through this and I will but it sure is a challenge!  
     So now that I have had my rant....what exactly can we do? Well, here are a few thoughts I have.  First of all if we cannot work out on a given day or week even, we pledge to not feel guilty about it.  That is easier said than done.
Everywhere you turn these days from TV to ads to social media we are confronted with the attitude that if you don't exercise you are 1) lazy 2) overweight 3) weak minded 4) will never be healthy and on and on.  Although these are meant to motivate us I suppose, they just serve to make us feel even worse than we already do.  That we have no chance of even being OK let alone perfect!
     Well, time to accept that we are who we are and although we can make some choices and decisions and will do that as much as possible, there are simply some things out of our hands thanks to RA.  A reality I hate but one that has to be assimilated into how we operate day to day.  Next up, some tidbits of information I offer that we can read over and over when we are feeling discouraged in the hope they will get us through the tough times and we will emerge stronger and ready to take on the world (or at least our little part of it).                                                           
                           
     This needs to be our basic premise....because RA is so individual we need to get away from listening to and comparing ourselves to anyone else!  The smallest gain is still a gain.  

    I know this is true because in the summer when I am already in light weight clothes I am much more likely to go for a simple walk than in the dead of winter here in Vermont where I have layers of clothes, boots, etc. to put on before venturing out.  So knowing this is half the battle I hope and even putting out your clothes or bathing suit so they are ready to be put on helps. 
     Despite the constant barrage of information about "no pain no gain", intensity workouts, etc., an easy workout is incredibly beneficial.  I repeat, incredibly beneficial!  There is no need to lift 20 pound weights or do kickboxing!  
     Moving our bodies for even a short time is better than not moving them at all.  So if you are feeling good enough to simply walk around your house, do that 5 times instead of 1 time and you have helped yourself immensely.
     Try to remind yourself that the mental benefits of exercise are many!  Not only the chemical release of endorphins that are proven to enhance mood, but the simple knowledge that you got up and moved your body is a powerful emotional uplift!  YOU DID IT!  Repeat that throughout the day and you will find that you are smiling a lot more and feeling a whole lot better about yourself.
I cannot say often enough how perfect water workouts are for folks with RA.  It is joint friendly because the buoyancy of water makes it joint neutral and that means you can do just about anything in the water from jogging to strength training to the traditional lap swimming.  The key is to get yourself there.  I get discouraged when I don't get there because of the pain of a flare but eventually it passes and I get my butt to the pool and feel so much better for it!  If you try it you will never go back!
     This is the time of year when it seems every TV talk show and every magazine we pick up urges us to diet, diet, diet.  I HATE THAT WORD.  I literally cringe when I hear it.  The key to eating is to do so with an eye to making good choices without depriving yourself of the foods you enjoy. I simple refuse to face a life that will not allow me to ever have a glass of my favorite wine and some pretzels because the carb count is to high.  Moderation, a varied diet and portion control along with some form of exercise are all we need to get control of those things we CAN CONTROL.  
     This is a great mantra to repeat to ourselves this year and I encourage you to follow it.  It is yet another device to put into our RA Management Toolbox!

Nan