Total Pageviews

Tuesday, November 29, 2011

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 - - 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 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 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.


Sunday, November 6, 2011

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!

Tuesday, November 1, 2011

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 -  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.