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Tuesday, November 5, 2013

Hidden behind door number 1....

     I find myself often reflecting of late on why it is that so many of us with chronic diseases like RA tend to push away confronting challenges and emotions that we face as a direct result of our illness.  At a recent RA support group meeting I found myself coming face to face (or door to door) with this exact predicament. 
     I think it is can be traced once again to the unpredictability of RA and our constant desire to have a day that goes EXACTLY as we planned...meaning no pain, no unexpected symptoms.  I have been facing a full frontal three (maybe even four) pronged attack lately.
     My flaring that has been going strong since decreasing my corticosteroid to 2MG in August is still raging...shoulders and wrists and hands.  Not a day, not one single day has been without pain in several months....and added to that is back pain which I never had before and am completely unsure why it has joined the party. Is that wearing me down?  More than I realized.
     Number two on the hit list is my continuous and still to be determined stomach/digestive issues.  Test after test have revealed lots of things I DON'T have but no answers....eating is an ordeal and this has been going on with little relief for 6 months.
     Finally I recently found out I have surprise really given all the risk factors I have.  I am now on Fosamax, reluctantly.  Will be having a lengthy discussion with my Rheumatologist at our next visit on all of these issues to see what are options are. 
     Oh and I forgot to mention that although my foot surgeries went well I do have to have one of the screws removed from the left one next month as it is rubbing painfully against my shoes to the point I am limited to one type of shoe at the moment.

     So you are probably wondering what all of this has to do with pushing away emotions.  I have come to realize that  often times in order to not completely devolve into depression and self pity I kind of "keep the door closed" as a strategy to keep on going.  It is so much easier to ignore than acknowledge....but...that begins to wear on us and eventually we have to open the door a crack and see what might emerge....

     Last night at our RA Support Group I "opened that door" a crack and thanks to the wonderfully supportive folks who share RA I was able to let the some of those feelings/fears/anger emerge.  It was tremendously validating.  

     I had been "keeping that door locked" for months in the hopes it would magically get "cleaned out" but the truth is that is not going to happen.....I needed to share my frustration, my concerns, my anger...
     I began to throw open lots of doors and it felt very liberating to not hold it all in.  Many of us with RA are so conscious of not wanting to vent or burden friends and family with a constant refrain of the pain and problems we face that we bury them deep inside.  Not a good idea!  The hugs, both literally and figuratively, that I got from my fellow RA Support group members were more healing than any medications or other treatments have been for months!
     They let me know that now that those "doors" have been flung open I can take the time to rest...body and mind....what a gift..


Wednesday, October 30, 2013

Second Guessing

     There is a nasty habit that often comes along with a chronic disease such as RA and it is pervasive and difficult to break if carried on for too long!  Second guessing is second nature to those of us who have to cope with the ups and downs and uncertainties of RA.  It is a disease that by its very nature instills doubt around every corner...
     No sooner do we think we have it all figured out in terms of treatments, medications, workload, lifestyle adjustments, exercising, diet, etc. and comes the doubt.  Controlling doubt and second guessing is a tool you need to add to the ever enlarging RA toolbox!
     Where does it come from?  I think it stems from the fact that RA is so unpredictable that it keeps us off balance just trying to achieve some sense of stability and routine.  Flares seem to come from nowhere, striking without warning.  That very fact makes us hesitant to go forward with decisions that could mean pain, sleeplessness, lack of mobility, decreased quality of life and on and on.  Sometimes it just seems easier and even more sensible to not make any choices rather then risk making one that could bring on a dreaded flare.
     I find myself not being as decisive as I prided myself on being for so many years.  And I know the root of that is firmly entrenched in the pain, etc. that could result in making the wrong one - be it a new treatment possibility, a new exercise option, a new job, whatever.  I am loathe to make changes these days and find myself second guessing every choice I face.  What I do know it that I need to break that cycle if I am to continue to successfully manage RA.  
     The truth is that second guessing CAN be a good way to examine all the many options we face in our management of RA.  Perhaps it is not only good but necessary to question the choices, the decisions, the options and then make an informed but distinct decision.  The trick is to not let it get too extreme....
     We need to learn  that trusting that our years of dealing with RA and its many facets will serve us well as we make choices.   Tap into the years of experience that we all bring to the table instead of shying away from it.
     Often our instincts will guide us as we journey through this process of decision making relative to RA management.  Learning to trust those instincts is yet another valuable tool to add to our arsenal. 
     Another pitfall to avoid is the "what if" scenario.  When I was facing my foot surgeries, I found myself going through this thought process for a bit...I had to stop myself and decide that I knew what I wanted to achieve and that this was the logical and best solution. Going through that process helped me to be more confident and I believe even made the healing process more efficient.
     It is so easy in these situations to begin to focus on the potential negative outcomes and loose sight of the more likely positive results.   The old Coulda, Woulda, Shoulda is a dangerous path to follow.

     That is when it behooves us to list all of the reasons for making a specific choice and counter that with the reasons to not go forward with a decision.  In that way you have done a thoughtful and considered examination of the facts and you will be much more likely to be able to handle the outcomes no matter what. 

     Knowing when to stop the second guessing process is a whole different matter and takes a degree of experience before you are really able to do so with regularity.  The pitfall of thinking TOO much is that you create problems that are so unlikely they are not worth considering.  And to consider them too much breeds more doubt and confusion.

     Questioning for the sake of questioning is not healthy or beneficial.  It should always have a purpose, a time frame and a final decision at the end of the process.  In that way you are in control of the second guessing so that in the end you are the master of your destiny and as much as possible in control of RA and not the other way around!


Thursday, September 19, 2013

Standing Tall

     My mother (and yours I suspect as well) always impressed upon my brother and me the need to ''stand up tall" and "sit up straight" throughout our childhoods.  We were told in no uncertain terms that poor posture would lead to humped over shoulders, bad backs, sloppy appearance, etc.  
     Of course she was so right!  I was often one of the "slumpers" and I do wonder how much of that continues to effect me, especially in terms of my RA.  Back and neck pain are surely intimate friends of mine and have been since RA struck but I do wonder if I had been more diligent about my posture if that would have alleviated or even prevented any of nasty discomfort I now have.  I guess I will never know for sure but one thing is for certain, even now if I can stay tuned in to my back and neck positions I do feel better. 
      I am hoping that getting back to Tai Chi will help with this.  I have tried to do Yoga but find that holding the positions is too much strain on my joints.  I was really enjoying doing Tai Chi at home but had to put that on hold till my foot surgeries and the rehabilitation was complete. Now it is and I think I am ready to go!
     Another favorite that helps with back and neck issues is the gravity ball workout that I have.  I do the 10 minute one and it is perfect!  The ball is firm but has give and is just the right size to allow for your hand to wrap around it without having to use too tight of a grip, a dilemma when my hands are flaring.  It also has a core strengthening element which I really like.  

     Simply bending over (with soft knees) and touching the floor and also wrapping my hands to the inside of my calf's is an easy stretch to do throughout the day to help with back strength and to relieve pain.  
     Neck stretches and strengthening exercises are another wonderful way to maintain proper posture and relieve and prevent discomfort.  I am sure you have all heard from various health care professionals that pain from the neck can be "referred" to many other parts of the body and often getting the neck back in shape and straightened out provides relief in your back, shoulders, head, etc.  I have gone to chiropractors for help in this area and it has worked sometimes though not always.
     Remembering how to position myself at my desk at work is probably the single item I need the most work on!  I have a tendency to sit forward and on the edge of my sit which is terrible for my back and neck!  I need to really work on getting this "straightened out" as I am sure it will make a significant difference. 
     The back/neck region is so complicated and when you throw in RA and the inflammation associated with it the picture becomes even more cloudy, making it a pain that is a challenge to treat.  
     the red color going down the spine is this photo pretty well illustrates how uncomfortable it can be when RA back and neck pain are flaring.  It "travels" up and down and into hips and shoulders.
     I am a firm believer in massage to alleviate discomfort from back/neck pain and RA in general.  I have been getting at least monthly massages for over 15 years and it is one of the best "tools" I use to combat RA symptoms.
     Of course my go to answer for most of my RA symptoms (other than medications) is swimming.  Without a doubt when I am regularly swimming my entire body feels better including my neck, back, etc.  I cannot recommend it enough as the perfect joint neutral way to relieve and prevent pain, osteoporosis, neck and back strain, build strength, increase flexibility and equally important provide a mental health break from all the daily chaos and responsibility we face.
     So get started today and "stick your neck out" by adopting some of these suggestions and adding them to your RA will be glad you did! 


Tuesday, July 16, 2013

she loves me she loves me not

     Just like this classic paradox, many of us with RA have the same love/hate relationship with the corticosteroids we often have little choice but to take to keep our RA under control.  For many of us it is the one medication that will put a halt (or at least give some measure of relief) to a flare.  Sadly there are not a lot of options that serve this purpose.
     This is one of those areas that has not come a long way in my opinion and yet it is probably one of the most critical from the standpoint of daily living and management of RA.  
     How much more important can it get when you cannot function or sleep or enjoy life when the pain of a flare takes over your life?  Yet there seems to be little useful research out there on this and sadly and certainly no viable options or substitutes for corticosteroids from my viewpoint.
     Despite some wonderful and upcoming medications in the pipeline from a DMARD (Disease Modifying Anti-Rheumatic Drug) perspective there is nothing much to report in the NSAID (non steroidal anti inflammatory drug) category...which is where we need some help!  There has not been anything new in this arena since the Cox2 inhibitors which turned out to be a bust since their proposed benefits were not what they were purported to be.  I wonder if that has not been part of why little has been done from a research perspective.  That said, the pronounced negative side effects of long term use of corticosteroids is well known and not very pretty...   I have experience with most of them including easy bruising and rash..just one of many.
    Bone loss issues are surely another one that is very serious.  So far I have not had this problem but I suspect it is just a matter of time till it becomes one.
There are many, many more negative and serious side effects.  The list is long and can be found by doing a simple web search.  Ironically there is a place for the use of corticosteroids in the treatment of RA:
     The issue comes in when one stays on it for extended periods which often happens as a result of our own adrenal gland not being able to "start up" the natural form our bodies produce after years of using the synthetic version.  That seems to be where I am at currently.  I have had RA since 1996 and over the years, used many, many medications to treat the disease.  Once the DMARDS, now biologics for me, became less effective about 10 years ago, I was unable to completely halt the use of prenisone without suffering intense flaring and all the fun components that go with it.  

     I am currently trying to get down from 4mg to 2mg and have used the method of "rocking" between 4 and 2 with a strict schedule of alternating.  The problem is that in the interim I had some work to do that meant heavy use of my wrists and shoulders and so sadly I flared really intensely and despite suffering through three weeks I could not get it to settle down without doing a burst of prednisone to get it back under control.  Not sure if it is going to work at all at this point.  No sooner do I settle on a plan to wean off of it then something comes along to make it a daily kind...enters into it and makes the process almost impossible.  

Not sure where it will go at this point.  Thus the reason I so wish that more research was being done in this area.  I understand that DMARDS are often successfully blocking joint erosions but that does not take care of all the components of managing RA, particularly the pain and intensity of flaring joints.  I cannot and will not take any pain medications for a variety of reasons I have highlighted in past posts, so new and less harmful alternatives to corticosteroids is crucial and should be advocated for by everyone connected with arthritis.  We also need to make it clear to our physicians what we are going through so that they understand the complexity and seriousness of this issue.
     I remain hopeful despite my own frustrating experience that an alternative can be developed...I just hope it happens before the negative side effects become too serious.

Thursday, June 20, 2013

A Chance encounter

     I had one of the most uplifting experiences of my life last week and I want to share it here on my blog because it is surprisingly tied to my RA journey.  
     I was at the pool where I do my water workouts, enjoying the solitude and physical pleasure that I derive every time I get into the water!  This time, thanks to the relative calm I am enjoying with my RA at the moment, I decided to up my workout by adding some time to my jogging and laps. I also added 5 repetitions per strength training exercise (I do about 20 different aqua strength training exercises).  All of this meant that it was a more vigorous workout than usual and the occasional sounds of exertion I made supported the intensity of the work I was doing!
     I had been alone in the pool for the first 15 minutes or so when another woman came into the pool area and after a brief glance/smile of acknowledgment to one another she entered the pool and began her own workout.  To be honest I really did not pay any attention to the woman the remainder of my time in the pool as I really enjoy my time alone and I listen to music on my waterproof MP3 player while working out.  So it came as a surprise when she entered the locker room later and as I was finishing up and getting ready to leave she said hi and said "Thank you so much for being here today.  You were a real inspiration to me!"  I said thanks but in what way?  She proceeded to tell me her story.  
     It seems her mother to whom she was very close, had passed away just a few months ago and she was really having a tough time handling her death which was quite sudden.  She had not been able to "get out of bed" for months and she was really trying hard to change that pattern. She said they had both been very physically active, ski instructors, etc. and she worked out at the gym we were both at.  She even pointed to her locker and commented on how it had been sitting there, filled with her workout gear for months, untouched, unused.  She said when she had awakened this morning she decided to come to the the gym and see if she could give it a shot.  She said she really did not expect to do much of anything but something told her to give it a try.  As she came into the pool area and entered the water she noticed that I was really working hard and as she said "I could tell that it was not easy for you and after watching you for several minutes I decided that if you could do it so could I and it worked.  Your dedication and attitude shown through in every exercise and movement and it was so motivational I cannot thank you enough.  I felt so much better when I got out of the pool knowing that I had taken that first step back.  I really believe this is the first day of the rest of my life and I have you to thank!"
     We both stood in silence, tears in our eyes, really unable to speak for a moment.  Finally I said how lovely it was to know that I had made a difference for her, even though I had no idea!  We chatted some more during which I mentioned that I had RA and as a result my workouts were a real respite for me...something I cherished as I had given up so many activities over the years because I simply could no longer do them.  Pool workouts offered me the chance to stay physically active and psychologically healthy as well.  
We exchanged names, goodbyes and said we likely would see one another again. I headed out to my car.  I have a short but lovely drive home (every drive in Vermont is beautiful!) and as I drove I began to quietly tear up again as I considered the "chance encounter" I had just had and just what it meant to me.
     Over the 17+ years of having RA I have come to accept that I have to make adjustments in many areas of my life.  Not a big deal.  Just a fact that is part of successfully managing a chronic progressive disease.  That said, changing and adjusting what I am able to do to stay physically active has been one of the areas that is the most challenging to adapt to.  I used to run, play tennis, dance, etc.  Over time I have had to give up a number of these but I have learned that it can be done!  And it can actually open up new avenues of movement and exercise that I would never have explored - like Tai Chi AND doing strength training and jogging in the water!
     The point of discussing this is twofold.  First of all it tells you the level of persistence you have to have and nurture to continue to find ways to stay active and keep moving when dealing with a disease that seems to rob you of your choices and ability to freely move.  Secondly and this is where the story comes back full circle.  Due to the fact that I have some limitations on what I can do and how well I do them, I never in my wildest dreams would have expected someone to declare that I had inspired them with my physical activity!  That fact alone was so uplifting and thrilling to me it made me feel elated for some time.  And now when I am feeling frustrated with what I cannot do, with my pain, with my limitations, with what has been taken away, I can look back on that moment, that conversation and remember that feeling of pride and joy.  I am sure it will sustain me for a long time and the hope it generates will keep me going even when the dark times find there way into my life as they surely will.
     So when you are wondering if your actions or attitude impact another person, remember that when you least expect it you may positively effect someone.  So stay open to those "chance encounters" because you just never know what joy and happiness it might reap.  Always know that the wheel of humanity is what keeps us all living a happy and successful life!