Appreciating IS in the Midst of Chronic Disease

What an absolute delight to learn that Dr. Carlo V Caballero shared my writing on his Rheumatology 2.0 journal.  Dr. Caballero is president of PANLAR (Panamerican League of Assoc. of Remautology).  Thrilling to see greater communication between the physicians who treat us and patients who live chronic conditions.
There is a soft breeze drifting through morning light, a dove fluttering by, the industry of traffic humming in the distance, and an insistent woodpecker hammers out his intent.  There is the man of smiling brown eyes I found so long ago, and his gently hilarious approach to life.  There is the good cheer and by necessity, calm industry of my tall son who has learned to live with what could be perceived as a limiting condition.  There is the friendship of my son and his bride across the way, who share creative pursuits and forward goals, while contending with the onset of disease. There is the love of my daughter and her bridegroom, a few mountain ranges away, living creatively in different sunshine.  There is the knowledge that this daughter is stepping down from tall mountains today, choosing to live fully in the face of what could be only debilitating disease.  There is the story of the friend who helped her reach the second mountain peak. There is the story of old friends who remind me of who I have been, and new friends living similar conditions, who remind me who I can be.  There are unspoken words of wonder, and the shifting mystery I find in studying Tibetan Buddhism. There is the wonder of gazing skyward at night, of looking forward to winter evening walks under a sparkling velvet canopy. There is the at once cautious and bold doe who steps out of our woods, watching us watching her, glancing back for her fawn.
Sleepless nights and difficult mornings followed by trying hours can easily dictate the chronic condition.  I prefer to appreciate the IS.
There is the simple act of kindness that touches another soul. There is laughter shared, truths exchanged.  There is the possibility of possibility. Always.  There is IS.

Motion & Stillness: Balancing Rheumatoid Arthritis (#RABlog Week)

RA Blog Week  topic du jour is Exercise!  The answer for me is a mix of physical and mental exercise.  As I’m fond of saying, there’s no right answer, and there’s no wrong answer for each of us.
When stricken with autoimmune arthritis, it’s easy to go into protective mode. Don’t move that joint, use those hands, walk on that ankle.  That simply could not be a worse approach.  Nearly three years into my battle, I’ve found the mantra of Motion Is Lotion to be a guiding force.  Our family physician in Alaska was fond of tossing this around.  Walk in his office beneath the Chugach Mountains, and this big guy might use some blue language, rough up your neck, adjust a hip, and emphasize that motion is lotion.  I’ve heard his voice so many times over the years, and especially now with RA.
As Rheumatoid Arthritis advanced from my hands to my wrists, shoulders, ribs, jaw, hips, toes, and ankles, the easy option would be to stop moving.  Instead, I’ve slowly tied my laces and headed down my country lane.  I’m a big advocate of fresh air and have returned to favorite hiking trails.  At my worst, I clocked a twenty-minute mile.  I’m especially proud of that.
After a slow walk in crisp air, on a very high pain day.  
 
I also use a recumbent stationary exercise bike, an inflatable exercise ball, and do (so far) seated yoga.  There are times that this motion will help ease pain, other times not so much.  I keep my focus on the bigger picture.  I recognize that at times I must be gentle with my body, and there are those moments when the couch is the right location.  Most often, the challenge of motion is what will care for body and soul.
Equally important to my management of Rheumatoid Arthritis is the concept of stillness.  As we all know, the emotional aspect of chronic illness is perhaps tougher than the physical.  There is no separation between the two.  A spiritual approach to pain management and chronic illness is a very personal thing.  I find comfort in the mix of Nature, attending a Tibetan Buddhist temple, and remain culturally Christian, being especially moved by the stories of the Catholic saints.
View from the meditation cushion this morning.
The stillness of meditation at times brings a literal physical lifting of pain.  I feel it rise and float away.  My soul is calmed listening to bird song, a sprinkler in the distance, feeling the warmth of sunlight on my face.  More often than not, mediation consists of bringing the mind back to focus, and thinking-not thinking about the pain of the crossed ankles and stiff fingers folded at my knees.  I’m a meditative work in process.
What works in your rheum?

RA: Master of Wisdom & Tomfoolery (#RABlog Week)

Several decades in, I thought I had life figured out.  Rheumatoid Arthritis has a way of screeeching perceptions to a halt, like a phonograph needle dragged across a vinyl record.

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A great master of wisdom (and tomfoolery), RA has taught me 5 things:

Patience:  The greatest lesson of Rheumatoid Arthritis is patience.  You must be patient through the worst days, the worst hours, and tough through the worst moments.  You must be patient with your emotions and allow yourself to grieve, but don’t forget to move on.  You must be patient when your pain is less, but then the tomfoolery of autoimmune exhaustion suddenly hits.  You must be patient with your family when they try to help too much, or the times they forget.  You must be patient with the general public, who can in fact be very general.  You must be patient with your doctors, nurses, technicians and staff.  Reserve your impatience for automated phone calls (i.e., free cruise to the Bahamas!).
Creativity:  Perhaps the greatest pain relief I have found is creativity.  I sit down to write, play with graphics, push paint around (poorly), or get lost in the meditative art of nature photography and I lose most perception of pain.  The minute I complete a creative pursuit, the pain seeps back into all corners, new tissues, and my psyche.  The real act of creativity will be to train my mind to live in creative distraction.  And I’ll happily take some NIH research dollars toward that effort.
Laughter:   Ah, that cliche.  Yet laughter truly is the best medicine.  There are are physiological benefits to laughter:  it raises the endorphins, relieves stress, relaxes muscles and eases pain. But the real benefit is the pure joy of life.  Our home is filled with laughter through even the worst of times.  The running joke is that we need to set up a Snort Jar:  mom pitches in $1 every time the tall chronic kid makes her snort with laughter.  I’d be wealthy in every way.
Forget the Impossible:  When RA struck me overnight, I was immediately aware of the simple things I could not do.  My perception was that I needed help with many simple tasks. This despite having raised a child with JSpA autoimmune arthritis since age seven.  There are few times she has distinctly needed physical help, and in such case it’s been to simply reach out and offer a literal hand up.  Sometimes that’s all we need, or we need to prioritize differently in a given day.  When your body fails, it is so easy to focus on the cannot.  I am still training my mind to simply do at my pace, and damn the results.
Friendship:  The physical and psychological realities of Rheumatoid Arthritis and any chronic condition hit hard.  A very difficult lesson is that old friends who are mostly healthy simply will not understand.  They may attempt to empathize, but bail when you mention a little thing like: I’m starting chemotherapy.  Silence often follows.  What I’ve had to learn is that there are different friendships for different aspects of life.  New friends in the chronic life community are my immediate source of comfort, solace, laughter, and most of all understanding.  Old friends remind me of who I was, and who I will continue to be if I allow myself.

Yogagraphy – The Art of Meditative Photography

I crept about the flowers and prairie grasses, seeking the beauty of morning light and sun angles, and had a realization.  Not only is nature photography utterly meditative for me, it requires careful, measured movements, stretches and positions that I wouldn’t normally attempt.  From this day forward, I shall practice the art of Yogagraphy.  

 

Sipping a cup of French Roast, I hear the morning song of Cardinals, Chickadees, and Doves.  Sunlight tops the towering oaks, so I trade slippers for a scrappy pair of Birkenstocks and wrap my crooked hands around my Canon camera.   Adjust the tripod, and step into the butterfly garden beneath the Crepe Myrtle, which is raining tiny, sparkling dew drops.  Maneuver just so to catch the magnificent backlight illuminating oranges, purples, and greens.   Adjust the tripod legs higher, no lower, then let the front leg dip.  Fussy ankles and toes forget to protest.   Crane the neck and dip the shoulders to find a bit of magic in the lens.  

 

As I meander, capturing the texture and structure of nature, I feel very little pain.  Creativity does that for me.  Since the onset of Rheumatoid Arthritis over two years ago, I find that complete absorption in a project nearly erases pain.  As soon as I stop the creative project, I am fully aware of the pain that is present.  Quite a powerful lesson.  Live in creativity, or train the mind to function in this way.

 

Creativity is different for each of us, as are physical abilities in the face of Rheumatoid Disease.  Each of us has some form of creative spirit, and I do not mean artistic ability.  What activity captivates you and makes you lose track of time?  Or lose track of pain levels?  
 
Yogagraphy provides my greatest moments of peace and pain relief.  I am distracted by Nature.