Decisions, decisions....

     It seems when you live with a chronic disease like RA you are continually faced with making decisions...like it or not.  I am not just talking about the simple choices that we all make day to day.  Do I do the laundry today or tomorrow, what do I make for dinner, etc.  I am referring to the much deeper ones that are never far from the minds of those of us with RA.  They need to be addressed if we are to successfully manage RA.

     At first glance, the notion of facing all of the decisions associated with RA can be like carrying a giant question mark on our shoulders....we are not sure where to turn, how to arrive at the right decision, who to consult, what to consider, how to prioritize.  It can be confusing and overwhelming.

     Standing at the "crossroads" of making major decisions can paralyze us and that lack of ability to make a decision can have a huge impact on your RA.  For instance hesitating on a treatment change you know you need to make could be a real setback.  I know when I was trying to come to grips with a medication failing (and it has happened several times) I tended to take a "wait and see" approach that has not always been the best decision.  I am trying to be better at anticipating that these days.

     Not moving forward when you have a chronic disease may well be the same as going backward leading to more pain, joint damage and poor outcomes.  So now when I see a flare rising up or some other issue, I try to make some well informed decisions around that concern.

     It is imperative that we develop the skills and the motivation to make decisions that will positively impact our lives with RA.  We need to gather the information methodically and with care in order to be truly comfortable with the decisions we make.  I try to go to sources and people I can trust and who have the knowledge I seek.

   With RA we face a myriad of necessary decisions - both long term and short term.  These decisions need to be approached with care, consideration and calm.  To do otherwise jeopardizes our health and well being.  That means going to the right people (remember your Support Team), doing the necessary research and just as important listening to your own gut when it comes time to make that final decision.

     Just as it is important to feel committed to what you have decided it also critical that you allow yourself to adjust your attitude.  Being flexible in your approach to anything you do in life is key.  If I make the wrong decision, I try not to dwell on that but rather learn from it.

    Understanding that you will make bad decisions is part of life.  Making good decisions is a learning process and often having made bad ones and then reflecting on the details of that provide us with some new skills to use the next time around.

     One of the dangers of "putting your head in the sand" and not making any decision at all is that you will miss out on what could be a disease changing choice or one that would ease your pain, make your life easier, happier and more manageable.  Sure there are times (many many) when RA and all of its challenges simply overwhelms us and "burying our heads in the sand" may seem like a great option.

     Life is not easy, just ask this ladybug...and it is that much more difficult with a chronic disease like RA.  But that does not mean it cannot be a joyful, positive life.  It just means that we have to be thoughtful in our decision making so that our lives can be amazing, despite the challenges of RA.  

     Part of your RA Tool Box must include decision making strategies and the understanding that waiting too long to move forward with a decision can have far reaching effects that we want to avoid.  I don't plan to have any regrets about chances I did not take, decisions I did not properly weigh, choices I was too afraid or angry to make.  
   

     Even taking one small step, making one simple decision can have far reaching consequences.  For instance, decide today that you will do 5 more minutes of exercising, be it walking, biking, strength training, swimming - whatever. Just 5 minutes.  After you see the positive impact that has on your life it will lead to other decisions and then other decisions until that fear and reluctance to make more important decisions becomes a challenge you embrace not one you shy away from.

     So my message here is not so much what the decisions are (there are so many we face when we have RA) but rather that we need to understand the absolute importance of making decisions and its value to us in managing our RA.   There are certain realities that I have come to understand while living with RA for 15+ years and being decisive is surely one of the most important!


Nan
     

A Fresh Start

     So for much of the month of January I have been toying with how to make 2012 better and different from 2011 in terms of my RA management.  I think it is important to understand that in many cases different does not always mean better...and yet for me in this new year, it does.  

     I believe that when you have a chronic disease you simply have to adjust and adapt and, well, do things differently if you intend to move forward in a productive way.  By taking on the challenge of doing things differently it truly can lead to something exceptional in the way you manage RA.  I have no intention of continuing down the same old road without diverting my trip.  That just takes you to the same place over and over again.

     Not only does that bore me (I like different "scenery"), it actually is a prescription for problems to arise with our RA management.  We have to be not only willing to seek out "new paths" we have to make it happen.  If we just sit by and wait for a new road to open up we may be waiting a long, long time...time filled with frustration, pain and regret.

     I cannot emphasize enough how critical it is for us to embrace the effort we have to make to start down a new path of better management, whatever that may entail.  Is this easy?  Absolutely NOT!  If it were we would not need our Support Team and we all know that is not true.  Change can be difficult in the best of circumstances, let alone when you are handling the never ending uncertainty of RA.  There are times when we just want to complain and have that be enough!

But then reality sets in and we realize that we must be willing to change or the truth is that when you have RA, going down the same road means the disease will get progressively worse.  And that is the ultimate reason to start fresh!

What do I mean by that?  Well, as new treatments are developed and released and more research is done on RA it is  of paramount importance that we stay abreast of what is going on.  In addition, we need to be vigilant about our health beyond RA so that we can be clear headed and as "healthy" as possible outside of our RA.  And finally, we need to be willing to, no beyond that, we have to look forward to the new beginning that a fresh start affords us.  The possibilities for positive change are truly endless and if we do not avail ourselves of them we are mismanaging our disease, not an outcome we want!

So as we move into 2012 we need to learn to see things the way they are not the way WE are...those are often times totally different and not always compatible notions.  That said, when we learn to tell the difference we will be better managers of our RA!  
Finally, a wonderful poem about the New Year and fresh starts!  Enjoy!
Nan

New Year's

by Dana Gioia

Let other mornings honor the miraculous.
Eternity has festivals enough.
This is the feast of our mortality,
The most mundane and human holiday.

On other days we misinterpret time,
Pretending that we live the present moment.
But can this blur, this smudgy in-between,
This tiny fissure where the future drips

Into the past, this flyspeck we call now
Be our true habitat? The present is
The leaky palm of water that we skim
From the swift, silent river slipping by.

The new year always brings us what we want
Simply by bringing us along—to see
A calendar with every day uncrossed,
A field of snow without a single footprint.

"New Year's" by Dana Gioia, from Interrogations at Noon. © Graywolf Press, 2001.

Revisiting the past has benefits!

       In looking over some of my posts I noticed that at times I have revisited a previous concept.  I really like the notion of pulling out an issue, concern or thought from a past post and delving a little deeper into it.  It confirms for me the value of re-reading my own blog posts over time so that I can pull out those concepts that might warrant further discussion.  

       Plus, just seeing it with "fresh eyes" and the different perspective that the passage of time provides can make for a whole new take on a subject that I have touched on before.
     So what does this have to do with RA management?  Well, the very nature of our disease makes it "different" at every turn.  This "newness" means that something we may have believed was right or good months or years ago may simply not be the case any longer!  Like a food that has passed its expiration date, we may need to "shop" again for the latest and greatest tools for managing RA.

     Don't be afraid to re-think something - be it medication choices, exercise options and so on.  To not re-examine what you are doing to manage RA can mean that your toolbox will soon loose its effectiveness. Instead of being your indispensable friend it can actually prevent you from making good choices.  

     Just like you trade in your car for newer model, so too you need to "upgrade" your RA toolbox now and then.  That means staying up to date on the latest research by reading periodicals, online articles, other blogs you subscribe to, etc. to stay up on what is happening with RA and chronic disease in general.  
     Another source is your "support team".  They are often able to assist you by either providing you directly with valuable information for your toolbox or by suggesting how you can access the most current information, research and trends available concerning RA.

     And again I go back to the notion of not fearing to re-visit something that may have seemed really "out there" at one point.  Perhaps your circumstances have changed.  Whatever  the reason, it is important when managing a chronic disease to keep an open mind.

       In life, being open to new ideas is not only desirable but critical to having a satisfying, successful journey and so it is with RA.
Nan

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