525,600 minutes...

                  

     As one of my favorite songs so eloquently asks "how do you measure a year"?  The lyrics so perfectly describe the simple truth....


Five hundred twenty-five thousand six hundred minutes,
How do you measure, measure a year?

In daylights, in sunsets, in midnights. In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand six hundred minutes
How do you measure a year in the life?

How about love? Measure in love...seasons of love.

     That really does sum up how I will "measure" my year...the moments that involved love and joy and care.  Those times that I shared in loving and caring and laughing with family and friends.  Those times I witnessed others caring and sharing their time, energy, love and lives with others in our world.  

     That really is the truest, most sincere and honest measure of the value of the year 2011.  I am choosing to see beyond my own situation with RA so that I can find peace and satisfaction in my life.  It would be easy to simply focus on my own narrow perspective of life with RA.  But in order to have a satisfying life and to successfully manage a chronic disease like RA, we need to step outside of our own individual circumstances and view the world on a larger scale....

      When I think back to the times this year when I was not only happier but actually healthier, they inevitably involve lots of joy filled activities with family and friends...times when I was NOT isolated or alone thinking of my illness and the difficulties associated with RA.
     Don't misunderstand what I mean here....I am not suggesting that we in any way stop being vigilant about the management of this disease.  It remains absolutely critical that we attend to the demands of RA.  That said there MUST be a balance between meeting our health needs and letting our every waking moment be centered around it.  

      Without that balance I believe we will succumb to the disease. Without that balance the challenges that are such a part of RA will become more than we can tackle.  Without that balance, our lives will spin out of our control and we will fall into a state characterized by pain and depression.

                               
     This may seem like an exaggeration but it is not.  Studies have proven again and again that when you focus "outside of yourself" you are healthier both physically and mentally.  I have the honor of working with hundreds of elders who are volunteers in our community and so I see first hand how much better off they are than their contemporaries who are less engaged in life.  They seem to have struck that perfect balance that I aim to duplicate!  

     So as I reflect on this past year and look towards the upcoming one I want to strive to find that perfect balance between successfully managing RA and resolving to not focus so intensely on the disease that it defines and controls my every waking moment.   That is a tough balancing act to be sure!

I am certain that I will "fall off the wagon" in the new year but I hope that I can look back on this past year and recall that those times when I was feeling my best and successfully managing RA, were those times I was also the most engaged in life outside myself!  

    May 2012 bring all of us with RA new treatments, new tools to manage our disease, new friendships, close and lasting ties with our family and friends and maybe just maybe a cure for Rheumatoid Arthritis!

Nan

My dog is a miracle with paws!

     Now it may seem odd to do a blog about RA that pays tribute to Leah, my Bichon Frise, but it will all make sense in a minute.
     As you can see, she is adorable!  What you cannot see (sounds like RA, no?) is that she is deaf, has been since birth.  She also has lots of allergies which manifest in red patches on her coat and red eyes which you can see in the photo.  She is also a bit heavy (can you say chunky) for her breed.  Bichon's are normally 12-15 pounds tops...Leah is 24 pounds!  She looked big from the moment I saw her and over the years she has maintained the weight so I guess this is the size she was intended to be.

      She loves people and would like to come to my office (that is her "chair" above) everyday but it just is not practical and once she comes on any kind of a regular basis there is no living with her afterward as she makes this horrific wailing sound when I leave if I don't bring her!  She does not bark in the traditional sense (well every now and then she does, but rarely) most likely because of being deaf.  

     When we first figured out she was deaf (and it takes a surprisingly long time) I was devastated at the thought that she would not be able to hear our voices and the sounds of the world around her, including those that warn her of impending trouble, like car horns, a growling animal, etc.  Our vet calmed me down considerably however when he explained to me that dogs don't "understand" language in the traditional sense but hear "blah, blah, blah".  They learn tones, etc. to differentiate sounds.  That said he did caution me that she must NEVER be left off the leash or even in a yard with an invisible fence as that would keep her in but not predators out and with her inability to hear she would be very vulnerable.  

     And so my life with my "mutant" Bichon began nearly 6 years ago and it has been an adventure for us both.  She loves lights and wind and fireworks and lasers and snow and her nest of pillows wherever she can make them....

     She is the most tactile, affectionate dog EVER!  If you come to my house be prepared because within minutes she will not only greet you but be in your lap nestled up demanding you pet her or "presenting" you with one of her toys to play tug of war with her.  I am blessed with a dear friend who "dog sits" for us when we travel and so Leah actually has 2 moms - a very fortunate animal indeed!

     She is fascinated with the stars and often sits on the back porch gazing up into the sky...she really does have a unique perspective on the world...

     I truly believe that God gave this very special animal to me for a reason...we are both handling our own challenges and by allowing me to witness how beautifully and perfectly Leah moves through her life without complaint or any signs of distress over the "cards she was dealt" I can witness how I should view my life.  When I feel sorry for myself I can simply gaze at my little Leah and see that no matter the obstacles, we can find joy and love and happiness in our lives.

     Last year, our vet suspected Leah had an enlarged heart and that she was in serious danger.  We took her to a specialist and found out it was not anything serious and she is fine...around the same time I was mis-diagnosed with inflammatory breast cancer and for 3 hellish weeks did not know my fate.... and so our mutual saga continues!  It really is amazing how many parallels we have.  When my hands are especially tender or in pain I find that gently petting Leah's soft coat brings me relief and keeps my fingers from locking up.  And since she simply loves to be petted it is a win/win for us both!

I truly believe God sent her my way for a purpose...and she has served me well...I only hope I can bring her half the joy and comfort she brings to my life.  
Nan

Life in the fast lane....

     So the holiday season has arrived and for a change I had planned far enough ahead that everything was running smoothly and my life in the fast lane was going at a pace I could manage....until one of life's unexpected events happened...my wonderful mother-in-law passed away the night before my husband and I were leaving for a week long trip to DC to celebrate my youngest son's graduation from Georgetown University and my middle son's swearing in as an attorney for the State of Maryland in Annapolis, MD.  Through the grief we adjusted our trip to include the services in Pittsburgh for three days where all of the family and friends converged to pay tribute and celebrate my mother-in-law's 88 years on this earth and deep abiding faith. 

     It always strikes me that funerals, despite the intrinsic sadness they represent, often provide an opportunity for family and friends to gather and reconnect.  Inevitably, someone makes the comment that "why do we only get together when there is a funeral or a wedding?".  Well, it actually makes sense in an odd way.  Throughout history, families have gathered for big events, whether they be sad or happy makes no difference really.  Our lives seem to take us to places that often don't allow for much more than that unless we commit otherwise, which rarely seems to happen in this day and age of "life in the fast lane".  Despite promises to "stay in touch" days and then months and even years will pass and finally another "event" will happen and once again the cycle will begin and the family will gather together...

     At first thought this seems sad to consider.  But then I began to reflect that in today's world where families are scattered to all the corners of the world it really is not surprising and since there is little we can do that will change that we best make the most of our times together and find additional ways to connect.  In our family many of us are on Facebook and are in the Family Group so we can share with one another there via updates, photos, etc.

       We talk on the phone several times a week, email and Skype as well.  Although this may not be nearly as good as the in person contact, it does help to keep us connected. I find that staying it touch, no matter the vehicle, is the key here. 

                                        
     And so our trip was really one of highs and lows for our family but through it all we chose to celebrate the milestones of life...some just beginning, some closing one chapter and starting another but all with an eye to the wonder of life and love and family.  It really drives home (in that fast lane) the true importance of valuing every moment you have together no matter the reason for the gathering...relish it, embrace it, and find joy in every moment you are with one another. 

     Take the time this Christmas season to reflect on the importance of family gatherings to your own well being and as always its importance in managing your RA!

Happy Holidays to you and yours!  Nan

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