A grateful heart

     Without a doubt, Thanksgiving is my absolute favorite holiday.  There are lots of reasons all wrapped up in gratitude and love.  This is a holiday that along with all of its bountiful food and family gatherings is also known for generating thoughts of appreciation.

     We have a tradition that is very special and dear to my heart.  Pieces of paper are laid beside a bowl along with a pen. Throughout the day while the turkey is roasting, people wander over to the bowl, and put pen to paper to express what they are thankful for over the past year.  

Then, after dinner, we pass the bowl and and read them aloud.  If you select your own you can toss it back in and select another.   We have been doing this for many years now and although we often have some of the same sentiments expressed around loving one another and thanking our hosts (my brother and Dave who open their home to my entire family every year!) I never tire of hearing them expressed!  Every year there are several new ones or funny ones or just cleverly worded ones that make it fun and sweet and special year after year.  I cannot wait till I have little ones at the table to contribute their thankful thoughts. I believe that saying aloud how grateful we are for the many blessings life has given us is a simple yet profound reminder of how wonderfully fortunate we are.  I have written at length in a previous post of my deepest gratitude for those in my life who are so precious - http://livingwithra-nan.blogspot.com/2011/07/thanksreally-you-bet.html - so there is no need to re-post it here...suffice it to say that all of those sentiments are still felt with the deepest love.

    The other part of this holiday I love is that our family gathers for no other reason than to be together - not for a wedding or a concert or a graduation or birthday, etc.  As nice as those all are, this holiday is all about spending time together....in our case we eat, watch lots of football, play football in the annual Turkey Bowl, shop, play games, watch movies and just hang out and laugh and share and hug...oh yes..lots of hugs. 

     One of the things I miss the most about my sons not living nearby are the hugs that a mom likes to give to her children every day.  It is amazing how important touch is to the feelings of love, security, contentment, etc. that we all crave.  And for a mother, those hugs are given and received from the moment of birth and so I naturally enjoy when my sons are home and I can hug them often!  If you have your children near you, hug them often and with joy and abandon!  I am lucky to have a spouse and a brother who are also huggers and I treasure their hugs too.
     So, relative to our RA there is much to learn from Thanksgiving.  One tough lesson for me is around how much I do with regard to the cooking and other chores associated with the day itself.  I was feeling pretty good this year and despite the fact that my brother insisted on cooking literally every meal (the man is a saint) I thought I would at least do the side dishes....well here is what I have figured out (DUH!).

     When I am feeling good, I assume that nothing will change  so I go ahead and do things that I know from past experience will likely lead to joint discomfort.   Why?  Well, think about your life prior to RA.  If you knee was not hurting you would not hesitate to run if you wanted.  If your hands were strong and feeling fine you would go right ahead and knit if you chose to.  But - if your knees hurt you would stop running and if your hands hurt you would surely not take up knitting.  Well, so it is with RA...with a big difference...we have to ANTICIPATE the pain and discomfort.  Our hands may start out just fine....but after stirring or chopping food those same hands have now become swollen and painful.  I find it very difficult to sit by with hands that AT THAT MOMENT feel fine while other do the tasks that I used to be able to do without thinking.  So it was this year....as I write this I have my compression gloves on thanks to once again (Dear God when will I learn?) doing more than I should have.  I really am not sure that will ever change.  I honestly believe that I will probably push the envelope till the end of my time on earth because I just cannot sit around and let others do everything for me...just is not in my make-up. I try to do it...God knows I try...and I have given up doing cooking at home for the most part...but the guilt over doing so is still there no matter how much I joke that I love not cooking.  I hear about friends who cook wonderful meals for their family and friends and I feel that I should do it too...but then reality sets in and I step back...usually.  When I don't I pay the price....a very high price filled with pain and discomfort.

     I can clearly recall times when I chose not to ride that bike or take that walk when I physically could have with no problem and that at times haunts me to this day.  What I would give to have some of those times back. But I am not a person the looks to the past with regret.  Rather I like to look to the future having learned from the past and with an eye to finding joy in each moment I am here and with my loved ones.   And so it is with a grateful heart that I have to thank RA just a bit for making me so keenly aware of how precious each day is.

Remember to reflect during this season of gratitude and kindness on the joy of being.


Nan

change - often necessary - rarely easy!

     I almost hesitate to say this for fear I will jinx it, but the changes I had decided to implement following my rather difficult spring and summer have really paid off and I feel like "my gears" are running smoothly.

     What had concerned me as it does so many folks with RA is whether I was 1) making enough changes or 2) making too many changes or 3) making the wrong changes.  

     No question that when faced with change, particularly when it comes to health related change, most of us would rather maintain the status quo then make changes that may or may not prove successful in our quest to manage RA.  It is really quite natural to want things to stay the same.  That, however, can prove disastrous for people with RA.  The long term consequences of not making positive changes are life altering for RA patients.

     In my conversations and online communications with RA folks a common theme is the "wish" that many express that they had "done that sooner".   Been there myself.  Where the problem comes in with RA, is that delaying a necessary change can impact our health for years into the future.   Whether it is a new medication, a new doctor or other health professional, a new job, a new relationship, a new locale - all of these and many more will have a distinct effect on those of us with chronic disease.  Sometimes you simply have to take the plunge.

     This is, of course, easier said than done.  I have come to embrace change over the years and I guess I can "thank" RA for that since it has literally compelled me to do that in many areas of my life from treatment choices to exercise options to vacation and trip choices.  

     I recall that to get started with the process of change I had to take them one at at time.  I tend to move at the speed of light so this in itself was tough for me.  In this case, though, having some patience paid off and continues to reap dividends.  One step, one change at a time, can make it much less intimidating.  And the difference can be monumental!

     Now not all changes afford you the luxury of taking time to consider them.  Case in point, my issues with my stomach this past summer.  When you are feeling ill week after week, delaying is not wise.  I should probably have had an endoscopy 15 years ago but had put that one off due to my fear of the procedure.  Unfounded I might add as it was painless and because I was "out" I did not experience the claustrophobia I was terrified of.   Although it may not have changed the end result I would have had the peace of mind of knowing that a hiatal hernia was at the root of it all!  Peace of mind can be a valid reward for change!

     I have to admit that there are times when the sheer quantity of changes we have to make in managing RA can be  overwhelming and that can be paralyzing in itself.  Never mind the fact that the change itself may be difficult to accomplish.  We have all been in that place where there is simply too many things going on at once...job changes, family dynamics changing, friendships changing and on and on.  It can be beyond daunting to the point you are completely stuck!

     I think it is important to also point out that the "changeable" nature of RA itself can make embracing change almost counter intuitive.  RA by its very nature can "change" from hour to hour, day to day.  That constant unsettling state makes accepting change almost abhorrent to us.  So it is with fists clenched (figuratively speaking) and mixed emotions that we  must continue our path to change!  

     The best way to counter the avalanche of change we seem to face is too prioritize those that need your immediate attention and those that can be put off a bit.  Literally list them on a piece of paper and decide what needs addressed now and then carefully weigh your options.  Develop a priority checklist and then follow it!  It is really satisfying to go through a list and check them off.  That will make the notion of change a bit more palatable!

     Another way to approach change is to fully understand the value of each change you make.  As I have so often encouraged on my blog, learn and research all you can about the decisions you are making.   You must be your own best advocate whether it is about change or some other aspect of RA.

      We can be our own best advisers if we stop and carefully consider all the knowledge and advice we gather. You will find that doing that will boost your confidence in the choice itself as well as the results realized from the changes you are adopting.

     Sometimes we are simply forced to change.  No options, no way out but to make that change.  I really do not like those kind and I try to avoid them at all costs but to be honest those of us with RA face them now and again and to be aware of that type of change may just help you to handle it when the time comes.  

By forced change I mean the ones that you are essentially required to make or the result would be worse than the change itself....not always easy to sort out.  In the end you really have to come to the understanding that it is for the best and adopt an attitude of belief in adopting the change.  

Otherwise you will always be second guessing yourself and that is not a healthy way to adopt change.

Listening to another person's perspective on a change you are considering can prove to be invaluable in your decision making process.   There were certainly times (and there still are) when I am either too tired, too sick, too overwhelmed or too close to the situation to have an objective view of what to do.  Those are the times when the wisdom of my "support team" is very welcomed!  I gather their input and then make my decision based on both my instincts and their collective wisdom.

     Another strategy is to take some time and reflect on past changes you may or may not have made and consider why and what the outcomes of those decisions were to you.  

     Ask yourself if you could do it over how might you "change" your course of action?  How might it have made an impact on your RA?  These are crucial considerations and by going through this exercise with yourself you may just discover that change is actually just what you need!

     It may be easier in the short term to "stay put" but just as in nature, seasons change, so in our lives the long term impact of change may just be what you need to successfully manage your RA!

Nan

chamma chamma chameleon

     I have come to realize that those of us with RA have many of the characteristics of the chameleon.  Like the chameleon, we often "blend in" with our surroundings, making it difficult for others to identify us.  That is both good and bad.  It is great if you want to keep your condition private for any of a variety of reasons. 

 It is bad if you are trying to educate others about the impact of RA and the realities of what we deal with on a daily basis in our struggle to manage RA.  The fact that our bodies often hide the true nature of RA would seem at first thought to be awesome!  Most of the time that is true but on second thought....

     it can make it difficult to convey to others (and I include doctors in this as well) what those of us with RA are feeling  physically, mentally and emotionally.   That can be a very tricky place to be.
     Which brings to mind a second way we are like the chameleon.  We too have the ability to stay "hidden in our own world" much like the chameleon who may choose to be seen depending on it's motivation.  Chameleons not only blend in but also can show a deep contrast to their surroundings (in their case for mating purposes).  

     In the case of those of us with RA, we sometimes are motivated "to be seen" and heard.  RA patients need those in our "world" to respond with empathy, respect and support.  It is beyond difficult to handle the lack of understanding about RA.  Most of the world believes that 1) RA is just another name for traditional arthritis and 2) it is 100% treatable.  Both of these are myths which need to be dispelled.

          I have explained in past posts the difference between RA and traditional arthritis - http://livingwithra-nan.blogspot.com/2011/04/defining-ra-sooo-confusing-to-explain.html  so if you want more details just check out that previous post.  When it comes to the mistaken belief about treatment I think that is due to some misunderstandings about RA.  Going back to the belief it is "regular" arthritis, most folks believe that a few Advil and all will be better.  But even for those who know that our treatment is more intense and complicated, they still don't fully comprehend that RA is fickle - demanding immediate and ongoing attention.

      Unlike chronic diseases such as diabetes and asthma, RA is not truly "controllable".  Only a very small percentage (around 5%) of RA patients remit.  That means the other 95% have varying levels of disease control, many with minimal success.  Add to that the roller coaster nature of RA and you can understand why, like the chameleon, we are tough to "find" sometimes.  I would go so far as to say that just like no two chameleons are alike, so to you will find that in a room of 50 folks, no two RA patients are undergoing the identical treatments and are on the identical medications.  That is a fact!  

     On the other hand, often you will find that folks who have manageable diseases (like diabetes and asthma) are on identical protocols and their disease symptoms can be managed if they follow proper treatment protocols. I am not diminishing in any way the severity of those diseases or their impact on a persons life.  Yet I wish that there was a "set" of protocols that would ensure my RA symptoms would be alleviated!  I have to admit that this makes me frustrated at times.  RA gets very little attention despite the fact that estimates indicate that 1% of the world population suffers from RA or 70,00,000 people and the morbidity rate is off the charts! One would think that these facts coupled with the high cost of treating RA would yield more research and attention. If only that were true.  

     Which brings me back to the chameleon....I chose to be like the colorful chameleon...I want to draw attention to RA in the hopes that if enough of us (remember we are 70 million strong!) stand up and identify ourselves, someone will take notice and the funding and medical attention will be proportionate to the number of people that suffer!  That is my hope, my wish and my purpose.

  Nan

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