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Monday, September 26, 2011

Distractions have real value in RA!

     We were back in my hometown of State College, PA not long ago, spending the weekend with family, friends and 110,000 of our closest friends at a Penn State football game.  Despite my digestive maladies and RA issues, it was so wonderful to get away and enjoy the spectacle that IS big time college football!  
     To be united in support of our Nittany Lions, cheering, singing our school Alma Mater and fight songs is so energizing and just plain fun it makes me smile for weeks afterward when I think back on what a terrific day it was. 
Of course sharing that with our family and seeing everyone again is a large part of the joy.
     Which brings me to the point of this post.....distractions get a bad rap in most instances.  We tend to view them as something that takes us away from our intended goal or task and towards something that is a waste of time and focus.
To be fair, there are many bad distractions - in the workplace, in our cars, and so on.  We all know the ones that pull us away from important tasks - like working and driving!  
     Good distractions, however, are those that take our minds off of heavy issues, intense thoughts, illness and chronic diseases like RA.  I am not suggesting that we succumb to distraction to the point of neglecting our health or the necessary items we need to attend to in order to successfully manage RA.
     What I am recommending is that we take a "timeout" now and then.  Let go of the burden of dealing with the day to day  "stuff" that makes up our lives with RA and just allow our minds and bodies to be "distracted".  For me that meant a weekend away - from work, from home, from the worry that really does weigh on all of us who are managing RA and the other "sidebars" that go with it.  It is so easy to get into a pattern of never ending worry about our health.  I find myself often waiting for the next "shoe to drop" as I am certain it will.
      Allowing ourselves the luxury of a good distraction now and then is just what we need to break that cycle of worry that often is one of the hallmarks of RA.
     I never thought of myself as much of a "worrier" pre-RA but since getting it I have noticed that I am much more inclined to worry and "stew" over things than in the past.  While some of that may just be age, mother of three boys, etc. I do believe that having a chronic disease is part of it.  
     Which leads me to the facts about worrying.
     When you really take it apart it seems so sensible to just let our worry go...if only it were that easy. That said, here is where the "good distractions" can really serve us well!  If we allow ourselves to step away and really let go of our day to day concerns it will, in the long run, replenish our minds, spirits and bodies to be better able to handle the "real" issues we face and need our strength to contend with.  
     Each of us knows in our hearts when it is time to take that time off and/or welcome that "good distraction".  Trust your instincts to guide you to that place of peace and contentment.  If it means being surrounded by 110,000 screaming fans then go for it!  I did!


Monday, September 19, 2011

Rome wasn't built in a day.....

     So how does this famous phrase tie into RA?  Well, this post is all about patience and the need for anyone with a chronic disease to possess this trait if they are to successfully manage RA.
     Anyone who know me personally can tell you that I am a person who likes things to get done yesterday.  As a full blown type A person, I am one of those people who does not handle "puttsy" folks who just take their time accomplishing tasks.  I have always envied those who can "take it in stride", "smell the roses", and all those wonderful attributes associated with patience.  I have to wonder if the lack of patience is there from birth...must be cause I don't remember every having it!  

         Having said that, there are times that my non stop, get it done now approach has proved valuable and all things considered it has served me well.  BUT....when it comes to managing RA impatience is a disaster waiting to happen!  
We are told to "wait" from the first moment we step into the first appointment with the first physician.  
     Waiting becomes the catch phrase - we wait months, often years for a diagnosis of RA.  We go through trial and error with medications and treatments to see what might work.  We are told to "wait" 4-6 months to see if a medication will work.  We wait for lab results, CT scan, MRI's, etc. to find out if we have joint erosions or other nasty problems associated with RA. We wait for years to see what lovely side effects might be unfolding in our bodies from the wonderfully evil medications we take.  Case in point - my current battle with longstanding GERD.
     I have had reflux for many years as have most of us with RA who have been on NSAIDS and other GI irritating medications.  It is one of those other really bothersome issues we have to handle along with all of the "normal" aspects of RA.  Thanks to being on a corticosteroid for 6+ years the GERD I was having has recently blossomed into an ulcer.  The syptoms of GERD versus heartburn are distinctive.
     Unlike heartburn, which is treatable with OTC medications and goes away, Reflux requires ongoing treatment guessed it...another my case Prevacid -60mg a day.  For a variety of reasons some of which I touched on in my previous posts, I suffered a nasty GERD flare starting in July with nausea and a nearly constant upset stomach.

 In August abdominal pain joined the crowd followed by all the other "bathroom" associated activities you can imagine.  I am certain that the long term use of Celebrex, Medrol and aspirin are the main culprits.
The common use of NSAIDS in the "general population" is astonishing enough!  I would guess most if not all RA patients are on some type of NSAID and will be for the rest of their lives.  So it not surprising we suffer from GERD and represent a huge percentage of those with GERD which is surprisingly common in our world today.
     One of the really annoying aspects to this is the fact that RA folks NEED Non Steroidal Anti-Inflammatory Drugs (NSAID's) as part of our arsenal of weapons to combat RA.  Unfortunately, this particular weapon happens to be a double edged sword.
     While it helps us on the one hand, it wreaks havoc on our GI tracts.  By its very chemical nature, it induces the production of acid in the stomach that is toxic to our body's digestive system.

 So much so that it requires we avoid certain foods that can irritate like chocolate, caffeine, mint, fried foods, alcohol, and the list goes on...and on...and on.  Sadly, many of the GERD inducing foods are items I enjoy and so the fact is that now and then I "cheat" and hope that I will not have to pay the price.  When will I learn?

We are told to "raise the head of our beds" by at least 6" and to avoid eating 3-4 hours before much for my evening munchies. 
     This latest bout has left me so sick that I am not yet able to eat "normal" foods.  So my diet currently consists of:
      Lots and lots of water....I mean I love water but a nice diet Pepsi would taste soooo good right now.   
     Bottom line - I need to make a fresh start and get re-focused on this GERD business because the fact is I have not been as sick as I have been with this in a long, long time and I do not want to go through this again!  
     I hope my memory serves me well so that I recall this discomfort and pain when I am tempted to eat at 10PM or have a big bowl of chocolate mint ice cream.    
     Once again it is crucial that I look on the bright side of I have lost 7 pounds thanks to the spartan diet I outlined above.  And I stopped taking Celebrex and the baby aspirin with no bad outcomes as of yet.  Two less medications is fine by me!
     By choosing to see the bright side of this I find it easier to comply with the lifestyle changes I need to make and it occurs to me that this approach works in other areas of RA management.  This patience trait that I so struggle with is beginning to worm its way into my personality it can become yet another tool in our RA management toolbox.  
     I have discovered that the ability to be patient breeds postivity since you are naturally more optimistic and relaxed.  I am determined to not allow myself to sink into negative thoughts and attitudes as studies show that having a negative approach to life leads to poor outcomes health wise.   Staying positive and leading our battle against RA with a strong, purposeful and yes, patient approach will help us reach our goal of successful management that much sooner! 

Monday, September 12, 2011

The sun'll come your bottom dollar

     So much has happened since my last post I can hardly believe it has been only a few weeks!  Just as the sun rises over the green mountains of Vermont in the photo above, so we here in Vermont are rising up from the terrible devastation of the floods from Irene.  My family and our personal property (home, etc.) escaped the wrath of the storm but thousands and thousands of Vermonters were not so lucky, including many folks in our city and nearby communities.   Over 100 roads were closed and at least 3 of our historic covered bridges that have been around for centuries were lost. 
     Despite the tragedy and loss, one of the most compelling things to witness throughout this crisis is the resiliency of the human spirit.  It has been truly awe-inspiring to see first hand how friends, family, people from all corners of the world come together in times like this to help one another.  Because of my work with seniors and volunteers, I get to see on a day to day basis the giving nature of people through volunteering so I was not surprised by the response but it was and continues to be beyond anything I have ever witnessed.
     So how does this tie into RA?  Well, while all of this was going on, I was having a really tough time - switching RA medications once again, finding out that my list of available activities is shrinking (as my height is with aging) and trying to keep a positive outlook.  Perhaps worst of all I began to develop some other troubling issues starting with relentless nausea.  8 weeks later it became clear when other symptoms entered the "party" that my reflux was back with a vengeance along with a likely ulcer.  For a good 2-3 weeks I was pretty much "out of commission", just trying to get through each day and getting very little sleep thanks to the night time pain that ulcers are so well known for.  
     It has really driven home to me how important other areas of our health are beyond the routine (i.e. day to day) care of RA.  Because the truth is that even when the "typical" symptoms of RA (joint pain, swelling, redness, fatigue) are not as severe as normal other "secondary" issues can creep up on us and become real problems.  In this case, the reasons for the ulcer are numerous and some I must take full blame for.  Out of my control but a real issue were the medications I take to control the RA (ironic, right?).  NSAIDS are horrible on your stomach and 15 years into RA my gut has had enough.  Secondly, I had cut back on my Reflux medications thanks to them not being covered for some time by my insurance (they are again, thank God).   What I also had become far to carefree about were the lifestyle items that one needs to attend to in dealing with GERD.   Stress was a nasty little gremlin that was contributing to the problem. 
      Even good stress can be a problem and I am not good at saying no to requests for my time and so it got pretty out of control this past year from a work perspective. 
      And though exercise is my primary release, because of RA issues, I have had to curtail and cut back and readjust, etc. my exercise and that in itself is stressful to me. 
     Lastly, I really stopped watching my intake of caffeine, chocolate and mint and often nibbled late at night.  Its like I just ignored the list of foods to avoid!
          So, the end result was a perfect storm (which is precisely  what it felt like in my stomach) and I was getting more sick by the day and just did not know how to cope anymore.  Now, as I reflect back, I realize that for a time, I was just not able to psychologically juggle all the demands, including the work, personal, health, leisure, travel, exercise, volunteering, etc. and something had to crash and boy did it!
     Now that I am coming back to a better place, I can feel such a difference it makes me realize just how lousy I felt!  Often you don't fully appreciate feeling good until you don't. One of the most difficult parts to this is the sleeping aspect.  As everyone who has RA knows, sleep is often elusive for us and so to have something OTHER than the RA be the reason is even more annoying!  I am currently sleeping in an upright position...even with my bed propped up to nearly 90 degrees I have to nearly be in the sitting position to sleep without pain which is all I care about at this point.  
     It really does look rather odd to see me at bedtime.  My one son was home and as I always leave my bedroom ajar when the hall fan is on to circulate air he could clearly see in as he was heading to his own bedroom one night.  He mentioned the next day that I was sure "up late reading" and I explained that I was not reading that was me sleeping!  
     Bottom line here is that as we continue to work to manage our RA we really must remember that there are "outlying" issues that must be attended to or we run the risk of being OK RA-wise but in bad health anyway!  Not a result I want.
      So just as my friends and neighbors rise above their difficulties with courage, strength and resiliency I hope I can model that same attitude as I regain my strength.