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Wednesday, October 1, 2014

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






Wednesday, September 17, 2014

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

Friday, September 5, 2014

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

Wednesday, August 20, 2014

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

Monday, July 14, 2014

60 years - 60 life lessons!

      This being my 60th year of life I thought it would be interesting to share some of what I have learned over the years...enjoy! 
1) Happiness: Is a choice for the most part....decide you want it and go after it and then hang on to it by surrounding yourself with positive people in your life. It truly is a state of mind that is attainable no matter your circumstances.
2) Family: The single most crucial people in your life. They love you unconditionally and with no agenda so when they offer advice, listen, assimilate and know it comes from a place of love. 
3) Trust: Begin your relationships, whether personal or professional, from a place of trust. I want all of my relationships to begin on a positive note.
4) Gratitude: All you experience - the good, the bad, the ugly have a purpose in your life and each one deserves your appreciation for what lessons it brings you. Remember to share your appreciation with those responsible. Start each day from a place of gratitude and it will change your life.
5) Failure: Can be the best way to learn to succeed if you learn from it and make the necessary adjustments from that failure. No one who has achieved success has ever gone without failure. 
6) Success: Comes in many forms and can be measured in so many ways, not merely material things. Successes in love, work, community engagement, etc. are all possible and often go hand in hand. 
7) Flexibility: Being able to adjust to the situation and be open to ideas and new opportunities opens doors to some wonderfully satisfying experiences.
8) Pain: Although never fun and often miserable it can be a life changing and eye opening experience that deepens your appreciation for life. Pain in all forms - mental, physical, professional and personal lead to personal revelations that serve us well.
9) Honesty: A trait that I have learned to value more deeply with each passing year. I dislike anyone who is unable to be honest. I find it deeply offensive on so many levels.
10) Friendship: I have become much more selective about using this term with people I know. For me a true friend does not have to be with you day in and day out but they do know when to be. They make you laugh, cry, face your fears and your joys. They tell you the truth and help you accept it and assimilate it.
11) Acquaintances: The majority of people in your life. Nice folks to know and spend leisure time with but not the ones that you share your deepest thoughts with.
12) Alone time: I have learned to treasure time spent alone, reading, meditating, swimming, etc. It clears my mind and gives me peace and calm.
13) Pampering: I now know that personal pampering is crucial to my mental and physical health so I get massages, mani/pedis, take Tai Chi, take time for me. I am better for it. Gone are the days when I thought this a selfish endeavor. Massage is amazing therapy: I have learned in the last two decades that massage has more healing potential than many other "treatments" out there. Everyone should try it at least once.
14) Share your talents: Everyone has something to share with the world and when you do it not only do you help others you help yourself.
15) Travel: It need not be anywhere exotic or far away but a change in your environment is very rejuvenating.
16) Don't take life too seriously: I have learned to let many things that in past years would have pushed my buttons go at this point. Life is too short to let other people control you reactions. 
17) Take another look at nature: If you have not looked around and learned to appreciate your surroundings you are really missing out. I am in awe on a daily basis of the beauty of Vermont.
18) Hurt people often need your sympathy: Sometimes the people who strike out the most are the very ones who need your kind words. Offer them, you have nothing to lose and the possibility of changing another person’s life is worth it.
19) Small gestures: They make a BIG difference. Time and again I hear back from someone who I simply greeted and smiled at. You never know when that simple gesture is just the boost that someone needed to get through a tough day.
20) People come into our lives for a reason: I have learned to embrace every encounter however small and learn from it.
21) Humor is the key to happiness: Without a doubt the single most important component I appreciate in my daily life is humor. Laughter truly is the best medicine!
22) Live drama free: I go out of my way to avoid drama inducing situations these days. I no longer want to be around people who thrive on chaos and drama. I want peace and joy and calm. 
23) Lighten up: Taking life to seriously take its toll. Learn to take a breath and see the lighter side of life.
24) Perfectionism is an illusion: It is next to impossible to be perfect so why bring that stress to your life. Do your best, work hard and appreciate what you are able to achieve.
25) Giving can be so profound: Sharing your life, your charitable dollars, your time and effort brings back rewards that you never thought possible. The satisfaction is priceless.
26) Take risks: It may be hard but try to do something out of your comfort zone and see how it makes you feel. I am surprised at how often it turns out very well!
27) Saying NO is OK: Always saying yes can spread you so thin that you start to resent everything you do. Learning to prioritize so that you are doing those things you most want to and saying no to the rest is very liberating and it makes you more productive for those areas you remain engaged in.
28) Share you passions: Don't hesitate to pass along your passions to those you spend time with. You might be surprised to learn that they too share some of them with you.
29) Explore the possibilities: With determination, purpose and passion, we can accomplish great things! Take on some new and different projects.
30) Don't ignore fear: Fear can be a good barometer of what to shy away from, what to look more deeply into and what to avoid. Be sure to examine it but don't let it paralyze you either.
31) Love and be loved: Remember to open your heart to others and don't be afraid to share your deepest thoughts with those you love. It is better to be loved and lost then never to have loved at all.
32) Live in the present: Today is where you are now...enjoy it...embrace it....tomorrow is still a ways away and yesterday is gone.
33) Exercise: There is no single act more important to your health. Movement in any form, however small will make your feel better physically and mentally. Find something you love to do that involves movement and DO IT!
34) We are all one human family: We are only as strong as our weakest link and intolerance and inhumanity to one another is unacceptable and morally corrupt. 
35) Intolerance is despicable in any form: God has taught us to love one another and to help our neighbors. If we lived this philosophy our world would be a much better place.
36) Embrace the highs and lows of life: I have learned equally from my successes and failures, good health and bad, sorrows and happiness and the lessons are profound.
37) Love yourself for who you are: In todays' world of constant striving to be younger and more attractive we need to keep our perspective on what is truly important....take care of your health - mentally and physically - the rest is rather silly really.
38) Let others know all the time how much you love them: Tell your family and friends as often as you can how much you love them. 
39) Learn, learn, learn: Every day should offer new opportunities for you to learn something new. It never gets old!
40) Meditate: I like guided imagery but any form of meditation is wonderfully soothing, calming and clears the mind! Try it.
41) Try not to be judgmental: Much easier said than done but a wonderful goal to aspire to. Learning to hear both sides with an open mind is wonderful!
42) Be true to yourself: Don't let the influence of others overshadow who you are and what you want in life. 
43) Accept advice: On the flip side of #42 be wise enough to seek advice and guidance from those you admire and respect.
44) Embrace the arts: Whether it is music, movies, dance, art, etc. open your mind to its wonders.
45) Embrace sports: Watching competitive sports in all forms from individual to team to Olympic to local is so exciting.
46) Work to live don't live to work: One can be a dedicated and successful professional without letting it dominate every waking moment. You need time to decompress and enjoy other aspects of life.
47) Find ways to cope with stress and keep it to a minimum: Living means having stress but how you handle it can make the difference in living longer and more happily. There are many ways to handle stress - learn them and practice what works for you.
48) Get a pet: Sharing your life with an animal, supporting it, loving it, caring for it and enjoying their unconditional love for you is one of the greatest joys in life.
49) Respect others opinions: I am often disturbed at the way we shout our views at one another these days. Civil discourse is the best and most productive way to move forward in this world. There is no reason to not practice respect and consideration.
50) Read: Enjoying books and magazines and newspapers, etc. is crucial to staying mentally alert and intelligent.
51) Support your local communities: Without citizen involvement our towns and cities will decay....get involved and be a doer!
52) Simplify your life: The older I get the more I want things to be simpler...from my home to my work life I want to keep it simple so I can enjoy each moment.
53) Stay close to the ones you love: Jay and I fully intend to retire near our children (and someday grandchildren). To be near them in our retirement years will keep us energized and young!
54) Practice preventative health care. Not a fun topic but one that needs to be addressed. Get checkups - if something does not seem right see your doctor, dentist or other specialist. Finding something early is the key to treatment!
55) Never be afraid to say you are sorry: Being able to apologize sincerely can be the most healing thing you do in a relationship.
56) Spend time at the beach: The sand, the ocean, the sounds and smells are healing and nothing compares.
57) Spend time in the mountains: The beauty, the woods, the smells are healing and nothing compares.
58) Social networking is fun! I love Facebook and I am not afraid to admit it! I have reconnected with many old and dear friends and it has been so wonderful. I also enjoy seeing and sharing photos of trips, weddings, events, babies, etc. 
59) Nurture your love relationship: If you are married, nurture your spouse, if you are dating nurture your love...They can and should be your soul mate for life!
60) Life goes so much faster the older you get: Each day seems to disappear these days so all the more reason to do all of the above!

Nan

Thursday, July 10, 2014

Let the sun shine in!

     
     Here in the northeast we really treasure our summers because they come and go far too quickly.  And this past winter was an especially long and difficult one so that makes this summer an even more welcome respite!
    I love the 4 seasons and would never be content to live anywhere that did not offer that climate.  From the brisk fall days to the dog days of summer I embrace them all.  Each time the seasons change I find myself getting re-energized and eager to see the landscape change as the days of each season unfold.
     For some folks with RA (and many with osteoarthritis) weather can be a factor in our flaring.  I know many people who swear their flares are directly related to weather shifts. I have not personally found specific weather patterns to blame but I am more comfortable in the cooler temperatures than the warm and humid ones.  Which is actually funny because when I am flaring I love heat....any heat...in any form...applied directly on the joint...whether by ointment, heating pad, hot tub, etc., it cannot be hot enough.  Yet, climate wise the colder the better....go figure!  
     Many folks prefer cold applications when their joints are flaring so my advice is try them both and see what works best for you.  It may even be that some times heat is best and yet on another occasion cold does the trick.  Once again the uncertainty of RA strikes!
     To make a simple yet effective homemade heating pad get some rice and a soft sock, put the rice in the sock and microwave for about 30 seconds or until it is hot and toasty.  Apply it to the joint and enjoy!  I love these and use them all the time.  The nice thing is that the socks are soft and pliable so you can wrap them around your wrist, neck, knee, shoulder, hand, etc. and they feel wonderful!
     Getting back to letting the sun in, not only is the warmth and gentle temperature delightful but the vitamin D in sunshine is crucial for the absorption and metabolism of calcium and phosphorous, which have various functions, especially the maintenance of healthy bones.  In addition, vitamin D is an immune system regulator.  All of these vitamin D benefits are of real importance for those of us with RA! 
     
     Opening the doors and windows to let sun shine in to your home and work space also provides us with a sense of freedom that is tough to duplicate in any other way.  Sitting in my office, windows open, listening to the sounds of the city outside gives me a sense of life and joy that I deeply and profoundly appreciate.

    In the summer I have a screened in porch that is essentially our summer family room, giving us additional open space to enjoy the sights and sounds of summer!  It totally changes my perspective for several months of the year and I know reinvigorates me to face the challenges of RA.
     Of course my favorite place to be in the summer is on a beach...any beach anywhere....the sounds of the ocean, the breeze off the water, the sand between my toes and yes the amazing sunshine and blue skies are like weather therapy for me!  
     Sitting on the beach, with a great summer book, listening to the sea gulls,  enjoying the bright sunshine, spending time with family or all alone I am transported to a place of peace and calm that I believe has a distinct impact on the level of RA discomfort I am feeling.  Not sure why but it seems to work!  Now if I could just find a way to be there 24/7 - 365 days of the year I would be good to go!

     Finally, metaphorically, bringing sunshine into the lives of others will bring it to you too, making your life more joyous and wonderful every day!
Nan