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.

Cue The B-Movie, working title Rheumatoid Arthritis

Cue the dramatic music!  DUN-DUN-DUHNNNN!!!  Patients with autoimmune arthritis are living a drama straight out of a B-movie. Replete with villains, rivals for our attention, weapons, and passionate communication.  We live for those moments in the sunset.  The days we feel strong, and well.  We have those cliffhanger moments, but have to be the heroine of our own film, whispering…I can do this. I can do this.  Repeat until you’ve earned an Oscar.
Arthritis treatment is seldom singular, 
most often we’re prescribed The Big Combo.
Chemotherapy drugs & injecting ourselves is a chance we take.  
A chance at a better life.
(spoken rapid-fire, on a shadowy street corner)
We stab, poke, wrap, immobilize….
because this villain we fight is not of this Earth!
“It was a cool day and very clear.  You could see a long way — 
but not as far as Velma had gone.”
– Raymond Chandler, Farewell, My Lovely
 
A strong dame, Velma nipped the pain with a snap of her compact.

Chronic Life Reality Show: An Amazing Journey

 
Chronic Life has all of the drama of reality TV. 
 
Inspired by my daughter’s Chronic Life live-tweet experiment for Health Central, I decided to have a little fun.  And perhaps illustrate what it’s like for those who are both patient and caregiver.  Just as anyone dealing with chronic illness, each day may take an unexpected direction.  

 

 

 

 

 

 

 

 

 

 

 

Next up on the Chronic Life Reality Show?
Win the Autoimmunity Idol.