Testing 1,2,3

 

     So...I think I may finally be done with testing for awhile and I could not be happier!  As much as I needed to figure out what was going with my stomach, etc. I was not looking forward to this latest round of testing which involved both a colonoscopy and endoscopy.  Thankfully it all went well despite my worries.  Best of all the tests showed no signs of an ulcer.  Instead I have a hiatal hernia.

    This is a pretty simple diagram of what it is.  Suffice it to say that I don't need surgery and it fully explains my nausea, chest pains and reflux.  Treatment is pretty much the same as what you do for GERD....or surgery, which is not recommended for me at this time as the doctor believes mine is treatable with life style changes and medications (which I already take).  That was very happily received news!

     I had begun feeling better while we were away and as I discussed in my last blog post, I am working to reduce stress to go along with my new attitude about exercise and my activity choices.  Reducing stress and slowing down my pace is not easy for me.  I tend to go at 100 miles and hour and in fact, have always thrived doing just that.  I needed to learn to walk, not run through my life.

     This may be the most difficult strategy yet for me to add to my RA tool box.  But, I know that in the long run (pun intended) I will be better off mentally and by extension physically, if I can assimilate this into my daily life.  I am often reminded by my family, friends and co-workers that I need to "slow down" so I know that it must be pretty evident that I tend to overdo.  

      So, the last few days I have really started to do just that.  Now most people who have been around me may not have noticed but I truly have changed my pace and more importantly my attitude.  I am no longer over committing myself each day to the point that when I get home I am exhausted and too tired to enjoy the remainder of the day.  By just stepping back a bit and not overextending my time I am seeing a big difference!   I am waking up more relaxed and ready to start my day.  I am finding that by being more selective and measured about what I am doing each day, I am actually being more effective overall in what I am accomplishing!  By simply stopping for a moment through out the day and "taking a breath" I am reducing stress, which is really what this is all about.

     Funny how something so simple can lead to something so profound.  I will admit that this week I was "tested" in more than just the physical sense.  This was a particularly busy week at work and one that was not short on stressful and demanding situations.  However, because of my new found commitment to "slow down and breathe" I was not only able to handle the pressure but I felt a lot more effective and actually enjoyed the challenge!  I feel like a thousand pound weight has been lifted from my shoulders (and boy is that nice for someone with RA!). 

     I find myself smiling more, breathing deeper, sleeping better, handling the daily demands of RA better and that is what I continue to strive for each and every day.  I know that I will likely slide back into the old habits now and again and with the holidays just around the corner it will be a big challenge.  But I am up for it and with my RA under control at the moment I think now is the perfect time to really commit to my new found approach.  Once again I am adding to my RA management toolbox...which is actually getting more and more complete with each lesson I learn.  I can really have a full and rich life filled with joy and beauty, not pain, frustration and stress.  Mission accomplished.

Nan

Lesson learned...I promise!

     The last few weeks have generated some big-time lessons for me and they come from a broad range of experiences.

     I just returned from a very special and amazing trip to Brazil with my family to attend and participate in the wedding of a young man who is like another son to me and my husband. We then had the pleasure to stay on in Brazil and visit with his parents who are close friends (his mom is like a sister to me).  The trip was one we had planned for months and months in advance.  

    An international trip of such a great distance was new to me and so I was eager to go but still anxious about how my RA would fare.  I was also in the midst of this whole stomach/GERD business which had not been resolved when we left but had improved enough that I was not going to let it stop me from taking the trip of a lifetime!

     So, what lessons did I learn?  Well, lesson number 1 is that I  discovered that a few decisions I made in advance really paid off.  I gave myself my Simponi shot 5 days early rather than 8 days late.  My doctor agreed that would be the way to go and he was right.  I also upped my corticosteriod from 4 to 8 mg. for the duration of the trip.  Another wise move.  The flight down was 11 hours, 13 hours on the way back (different route) so between the confinement of the flight itself coupled with the miserable seats and lack of leg room I would likely have spun right into a flare before our trip began!  Although I did have some minor pain issues they resolved within a few days.  

     Lesson number 2:  Try to get some exercise while on vacation but wait a day or two to allow some time for your body to adjust to all the new elements you have introduced into your days.  I am so thankful that I swam while I was away although I did not get to do it as often as I would have liked.  That said, I am convinced it helped me to have a relatively pain free trip!  
     Which brings me to lesson number 3: This is my second long trip within three months so I was worried about how I would manage to get through this without any flaring.  As I sat on the beach in the Riviera in Brazil (yes that is meant to induce reader envy) I had a revelation.

     On both trips I had been very careful to not overdo it physically, to not strain myself from an exercise standpoint.  I also was clearly able to be stress free for the most part, my most demanding decision being what to order for dinner.  I realized that "back home" I was not nearly that diligent about these areas of my life.  In fact I would go so far as to say that I pretty much ignored them, often plunging headlong into stress inducing situations; insisting on participating in exercise regimens that were clearly not wise choices; in short, I was not living day to day in a way that would transfer the benefits of "vacation mode" to "home mode".  I knew when it came to me that I had won the prize for best lesson learned!

     Now came the hard part....take these lessons home and assimilate them into my life on a daily basis.  First of all, I have revamped my exercise plan.  I am dropping Zumba (for now anyway) as it is simply too strenuous on my joints (when you are wearing more braces on your joints then you are clothing and socks combined it is time to move on).  But...I need exercise to stay sane, sleep well, keep my mood in check, etc. so what to do?  Well, I am adding an additional day of swimming (THE best form of exercise for those of us with RA, by the way) AND I am going to try some gentle yoga:

and some tai chi:

   I have to admit that at first, the old "poor me" mentality began to creep in.  I started thinking why do I have to continually change my way of life and give up the things I love to do because of this hellish disease?  But then, after I had my pity party I got a grip...not easy but necessary to manage RA as I have said over and over here.  I realized that I had once again, however inadvertently, added on to my "self awareness tree".

      Instead of looking at this situation as something being taken away I decided to flip that and see it as an opportunity to try something new.  A chance to find a new and interesting challenge, to learn a new type of exercise.  And that is exactly how I have approached this and it is working!  
     What still remains is to tackle the stress and "doing too much" pieces of the puzzle and I will keep you posted on how I plan to solve those issues!  Wish me luck!

     So, take these new found lessons and use them as you continue your journey with RA.  I hope they serve you as well as they have me.
Nan
     




  

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!

Nan

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 and....you guessed it...another medication...in 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 bedtime...so 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:

BANANAS 

APPLESAUCE

SALTINES  

PROBIOTIC YOGURT

WATER                                             

      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 this....so 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! 

Nan

The sun'll come up....tomorrow...bet 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.

Nan