times they are a 'changin

     Although I am a big fan of fall (it is my favorite season by far!) the one aspect I am not thrilled with is the need to turn back the clocks. Darkness falls upon us each day by 4:30PM and what that does to me both physically and mentally is not very pleasant.  

     I suspect many others have the same reaction.   My days are shortened not just in terms of the light but also my ability and desire to be active is lessened by as much as 4 hours!  The end result is I have to really fight with myself and this overwhelming desire to just change into my PJ's when I get home from work and vege out with the knowledge that I should do some type of physical activity to stay healthy.  
                               
         Being torn between those two choices is the hallmark of how difficult I find this time of year to be for me.  So I try to get motivated to workout in the AM but alas the same issue rises up as it is not light out until nearly 7 AM here in Vermont and I like to head to swim no later than 6:30!  That coupled with the fact that once the cold weather hits I need to wear a lot more clothes just to get where I am going and the same dilemma presents itself.  

     Change is not bad in and of itself.  In fact, if we can learn to adapt to it, it just might make us more flexible and better able to adjust to changing circumstances that surround us on a daily basis.  RA demands that from us already so that means that those of us with chronic conditions should have a a leg up so to speak on the rest of the world, right?  I like that way of thinking!  

     The challenge really is mental when is comes right down to it.  I think we need to have a plan in place so that when the time shift happens we are prepared to deal with it.  I tend to just wait till it happens and then I go through at least a few weeks of non activity while I wallow in my loss of light!

     So next year I am going to try to eliminate this obstacle by wrapping my head around the time change a few weeks in advance and get a plan in place to overcome the inertia it seems to produce in me.  Maybe just remembering that the actual time is still the same just the light is different will help.  Or maybe if I move my workout time back while it is still light out so that my energy level is not depleted will be the key.  Between now and then I will come up with a plan to offset this annoying occurence so that I can remain healthy throughout the year!

Nan

seasons of change

     Right now we are "in between" seasons as summer has wrapped up, fall is unwinding and soon we will be in the throes of winter.  One of my favorite holidays of the year, Thanksgiving, is approaching and with it comes the chance to reflect on all that we have to be truly grateful for in our lives.

     This time of year also prompts me to re-examine my RA status; medications, treatments, plans for the new year, changes I want and need to make, etc.  I really like to do this before the new year begins as it gives me time to digest and decide what is best for me in the coming year.  I don't want to find myself at year end wishing I had made some changes I did not get around to and then entering a new year with no plans and feeling at loose ends.

     I am often teased about being too highly organized but I have to say that when it comes to managing my RA being organized is something that has made my life so much easier and I am truly grateful for having that trait!  Whether it is planning for trips, RX's renewals, doctors appts., exercising, etc. the ability to plan and has been a key to living well with RA!

     Which brings me back to being thankful and how that simple attitude permeates my life and informs every day I spend on earth.  Without gratitude I would be much less of a complete person and certainly a lot less capable of managing RA!

Nan

      

The RA Costume - Halloween and beyond

          This being the month that brings us Halloween and the costumes we often don to trick or treat it occurred to me that for many if not most of us with RA managing our appearance is akin to the effort it takes to get together a costume for Halloween.  

     From the moment I began to suffer with RA, it became a huge hurdle to keep up with my appearance.  I have tackled those hurdles and now take great pride in my ability and determination to take care of my appearance but it was not easy not only for the obvious physical reasons but also the psychological ones as well.  

     Lets discuss some of those.  One - the pain - the discomfort associated with RA often translates into an inability to even brush our hair let alone attend to makeup, etc.  When I am flaring the simplest task are excruciating and so often any extra effort just goes by the wayside.

     Two - fatigue - the never ending tiredness takes its toll in terms of having the energy to concern oneself with anything beyond just general "upkeep".  

     Three - side effects of medications - too often the medications we take have side effects such as weight gain, skin dryness, eye problems, etc. that change our appearance in a not very pleasant way leaving us feeling unattractive, undesirable and asking ourselves "why bother?"

     Four - depression - The psychological burden of having a chronic disease means we are likley to experience some level of depression associated with RA at some point.  In some cases it can be quite dibilitating.  Clearly if one is sad or depressed or anxious taking the time and effort to keep up your appearance is often just too difficult. 

     Five - physical changes - RA changes your body constantly, wheather you like it or not.  Swelling, redness, skin breakouts, and of course weight gain are just a few of the physical changes that often accompany RA.  It becomes difficult to even gaze in the mirror and wonder who is looking back at you let alone stay motivated to look nice.

     Six - low self esteem - it is a real challenge to have high self esteem when you are being forced to give up so much of who you once were as a result of RA.  Things we may have loved to do in the past may no longer be possible and that can translate into feeling hopeless and unmotivated to make the necessary adjustments to maintaining high self esteem. By extension taking care of your appearance begins to take a back seat.

     So how do we overcome these nasty attitudes and realities?  Pause and take stock!  Simply knowing the what and why helps to offset some of these negative and harmful issues.  If you can identify with them you can change your response to them! 

     Take small steps.  As the saying goes, "Rome was not built in a day".  If you have gained weight, don't get on the scales for a bit.  Instead give yourself permission to mourn the old self and embrace the new you.  Buy one or two new pieces of clothing that will accomodate your new size but still flatter you.  In today's world there are lovely clothes for any size! In time, you can work on trying some strategies for maintaining a healthy weight like keeping an eye on your diet, walking a bit more each day, etc.  But with all of the changes that are thrust upon us with the onset of RA, taking it slow is a very necessary stratgey in our toolbox!

     Share your feelings with friends, family or your RA Support Group.  Finding others who have the same frustrations and battles goes a long way in restoring your depleted self esteem.  Getting reassurance from loved ones that you are still the same person they love and admire is key to keeping our spirits up and our joy alive.

     Try something new and different to pick up your spirits.  When I had to face the fact I could no longer run for fitness I had to find a different outlet and so swimming became my new passion.  It was a challenge but one I am so glad I decided to take on!  You can also try a new hair style or color.  That is often just the pick me up we need to feel rejuvinated. 

     The differences we now must contend with can be viewed as opportunities as opposed to deficits and embracing that overall difference can lead to a willingness to take better care of ourselves inside and out.  Then you can confidently say "here I come" - a new and improved version of myself complete with a beautiful "costume".

Nan

you CAN teach an old dog new tricks!

     Despite the old adage contrary to this statement I am convinced that learning can happen at any age!  Not only do I see this with the population of older adults that I work with but now I am part of that group having turned 60 this year. Not only is it possible it is crucial to maintaining a good quality of life AND in the case of RA, to managing the ever changing world of chronic disease.

     Keeping up with the latest news, treatments, management strategies, etc. should be as important to each of us as taking our medications, exercise and diet.  To illustrate this, simply look back over the last two decades of treatment options promoted by rheumatoligists and you will see the sweeping changes that have occurred in the world of our disease.  It is nothing short of stunning the many advances that have been made in the relatively short time period from new medications to when to start aggressive treatment to alternative options, the list is long and impressive!

     In chatting with some of our RA Support Group members who have had the disease for 25+ years and/or their older family members who suffered it with it is amazing to hear the way RA was once treated.  Not only were the medications different (which frankly is not surprising) but so many other aspects have changed!  At one time, people were sent to rehab places and essentially told to stay in bed when in pain because it was believed that any weight on the joints would make it more painful.  Now, of course, we know that has very little to do with flaring since it has been determined that RA is autoimmune in nature.  

     Exercise is yet another example of "learning new tricks".  It is now well known that staying physically active is a key strategy in not only surviving RA but enhancing the quality of life and remaining healthy and fit - physically AND mentally!  And yet not long ago the idea of exercising with RA was totally contrary to popular thought.

 

     I have to also mention the value of innovation and technology.  I find that many of the newest technologies have been very helpful to me, not only medical ones but also in terms of electronic devices like my phone and computer.  The easy use and soft touch they involve have been life savers and actually have allowed me to continue to work even when my hands were flaring pretty badly.

     I actually like new ideas, plans, etc. for the most part.  I have learned, in no small measure due to RA, that change can be "just what the doctor ordered" and to embrace it is a lot less stressful than fighting it.  This is not a lesson that came easily to me.  Only after having multiple surgeries and changing medications numerous times and being forced to switch exercise choices have I learned that to not accept and move forward with these changes can be so stress inducing it will actually cause setbacks and unnecessary and avoidable anxiety.  No thanks!  

     By allowing ourselves to embrace change we truly invite new thoughts and actions which in turn lead to a better life with a much better handle on our RA in all its "colors"!  Entering through the "new doors" will only make our management of RA that much more complete and successful.

     What actually prompted this whole train of thought today was my most recent episode of anxiety that lasted for several weeks unchecked.  I had decided, despite know this was not likely a wise choice, to "keep it to myself" and try to get it under control without benefit of sharing with anyone. Now I knew from past experiences in many other aspects of my life and contrary to even my own advice to others, that this was probably a bad decision.  Be that as it may, I still determined to buck up and try to do some self talk and other strategies to see if I could handle it on my own.  Well, two weeks into it I was chatting with a dear friend and it just all bubbled up, tears and all.  She was her usual patient, compassionate self and I found the anxiety falling away as we chatted.  Much to my surprise, it has not returned to any significant degree since!  So now I know yet another strategy to cope with anxiety and will take advantage of this in the future.  Thus my conclusion that you CAN teach an old dog new tricks!

 

     Biggest lesson for me is to keep my mind open to any and all new "tricks" knowing it will lead to a healthier and happier life!

Nan

fight or flight

       So we have all heard of this concept but how many know what it means and how it might be related to chronic disease?  Anxiety, for me, really became an issue during the time I was patiently (pun intended) waiting for someone, anyone to figure out what was causing the many symptoms that would later be revealed to be due to RA.  

     However during the interim I was being passed from doctor to doctor and told that it was probably all due to stress.  Knowing that what I felt was quite real only intensified my anxiety and to this day I am paying the piper. 

 Once the diagnosis was made it certainly eased my mind but the fact was the damage was done in terms of anxiety triggers. I suffer with it to this day and lately it has reared its ugly head again and I am trying to work through it.

     Just around the time I began to have RA symptoms which went undiagnosed for some time I began to have feelings of butterflies in my chest...sounds strange I know but that is the best way for me to describe it.  No pain, no other issues that could lead one to think it was heart disease, etc.  That said, I had an EKG done following a sudden, unprovoked panic attack.  Long story short a series of tests were done to ensure that it was not my heart and in the end due to some elevated heart rate issues I went on Toprol XL and have been on it for about 15 years.  No heart problems surfaced and it was great that was ruled out.  Fast forward to a few weeks ago.  I had gone off the Torprol in March when I had my para esophageal hiatal hernia repair and have been doing great ever since.  No issues at all.  Well, one afternoon I had a rather abrupt sensation of an increased heart rate and took my blood pressure and heart rate check myself.  It was not overly high considering my elevated anxiety response (only hit 99) and went back down to the low 80's within an hour.  Blood pressure was perfect.  So I thought well let's just chalk that up to the crazy pace and stress of late....just suffice it to say that there has been a LOT going on and leave it at that.  All good I might add.  At any rate, since then I periodically get this weird sensation that I had not experienced in 15 years back again and it is wearing me down.

     I am so disappointed that after all of this time this nasty, nagging anxiety cycle has resumed.  And what really has me concerned is that it tends to be a downward spiral that can be very difficult to crawl up out of.  

     Most frustrating of all is why now? I have surely had small episodes of anxiety over the years but nothing with such a physical response that brings back bad memories and fears I would sure like to keep packed away never to be seen again!

     I know in my head the way stress works and plays with my mind but knowing it in my head and controlling my thoughts about it are two very different things!

     With that comes this sense of impending doom and absurd thoughts of death, fear, etc. that take control of my time, my life and my days.  So hate this cycle and would give anything to not ever have it happen again.

     I firmly believe that root of all of it goes back to the extended period of uncertainty associated with RA and I also believe that it accounts for how under extreme periods of stress (good or bad) it resurfaces now and then.  I am trying my best this time around to handle it with some tools that have proved helpful in the past.  Fingers crossed they work this time.   The pattern of stress and the way it effects your mind and body can be overwhelming and paralyzing.

     So for me anything that takes my mind off it, from massage to guided imagery to exercise and time with friends usually grants me some relief and hopefully will do the trick this time....

     We have enough to manage with the day to day demands of RA.  I will muster all of my will to see to it that anxiety does not rob me of the joy and happiness I strive to enjoy each day.

Nan

a game of chance

     Seems to me lately that RA is surprisingly parallel to games of chance.  As all of us who deal with it know only too well, RA seems to run in "streaks" muck like luck does for a gambler.

If you are fortunate enough to not be flaring you are on a bit of a hot streak of luck and hope it keeps on for as long as your luck holds out!  The real irony of this is that just as games of chance rely on luck there are times when RA seems just as fickle.  The single most disruptive aspect of managing a chronic disease like RA.

Despite the many options of treatment available to treat RA (or perhaps because there are so many) finding the perfect combination AND having it last the test of time has been elusive for me and for many others who suffer with RA.  I puzzle over this often and still have no answer.  

What I do know is that any chance of success seems far to random for my liking and continues to be the most frustrating part of this disease.  Thus the comparison to games of chance.  

Just as you rely on the throw of the dice to win, I often feel like I could just throw dice with the names of all the treatment options on them and the ones that turned up would be the ones I would go with and my chances would be just as good as if I took time to decide, contemplate, etc. to make the same decision!  

So my reality proves (to me at any rate) that the chaotic and uncertain nature of RA is identical to the chances gamblers take when they play their games of chance and hope to win but know full well that luck better be their friend or they are going home empty handed and waking up with no money or in the case of RA waking up to a flare and uncontrollable symptoms that may linger till the next "'lucky streak" comes along....
Nan