Dear Otto(immune) #RABlogWeek

Here I am, mid-week.  And here you are, my unbidden companion.  Once again you have dictated the course of my days, my hours, and my energy.  I’ve had the best intentions.  You see, it’s the first annual RA Blog week, hosted by a delightful fellow named Rick Phillips who shares his writing at RA Diabetes.
I missed the first couple of blog topics this week, including the topic of energy.  Ironically it was this balance of energy that kept me from clicking the keyboard.  I awoke early Monday morning with ideas and goals flooding my mind.  This alone tells me that Enbrel has begun to work. Overall motion has improved, though pain levels remain the same.  Otto, you are still making your presence known in my hands, though the fingers will now straighten.  If you’d ease up on the jaw, the wrists, shoulders, ribs, hips, ankles, and toes, I’ll take you someplace nice. Realistically you’ve learned that I’ll take you anyway, because life is one big adventure.  Fresh air, architecture, history, and the sparkle of autumn light beckon.
Though the goals and motivations were there, Monday was a giant struggle.  To achieve that huge garage clean-up and gather donations for charity, require multiple talks with you.   Determination and pit stops carried me through this task that had been on my Tew Dew list for weeks (and a list is more fun when titled Tew Dew).  By the end of the day, I could barely walk and the heating pad beckoned.  Still, I forced the body to remain in motion and threw together a quick, healthy home-cooked meal.
Maintaining energy to prepare healthy food is vital not just for Otto and me, but also for my son. Before I developed Rheumatoid Arthritis, my young adult son became ill with Dilated Cardiomyopathy and Ehlers-Danlos Type 1.  Good nutrition has been a significant part of his health gains in the last four years.  As I always remind him, I need the motion, while his heart needs the rest.  And I’ve got a guy with Smiling Brown Eyes who loves my kitchen creations and we do so much for each other.

Tuesday passed as Tuesday’s will in any life, and especially in the chronic life.  Run here, run there, drop the truck at the mechanic, take chronic kitty to the vet, fight with unresponsive websites, then spend an hour on the phone with Enbrel and the mail-order pharmacy.  And complete all of this before the appointed Enbrel Hour.  Do that quick injection because there’s no time to be wimpy or squeamish.  Outwit the men at a game of Catan, take pup for a walk under the stars, and finally settle the Enbrel-hungover self into bed.  And will sleep to be mine. Otto, you won that game.

1970s Old Soul and Happy Camper
The game that you will not win is the game of adventure and the pure joy of life.  I’m an old soul with a young play list, and I have places to go.  Otto, you carry a lot of baggage, so pack it — we are going places.  We’ll rest along the way and feel the cool autumn mist rise from a wandering trail.  We will savor the sights and texture, view old stone walls and fresh green leaves, hear the footsteps of generations.  Otto, pack your bags.
Love,
Jody

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.

Painsomnia – WWJD: What Would Jim Morrison Do?

 

Painsomnia woke me at 3:45, and at 6:30 I’m still awake.  So I ask myself, WWJD?  As in, What Would Jim Morrison Do?  I’m pretty sure that beautiful boy, desert guru would treat pain as a free floating, mind-expanding experience.  
 
You know the day destroys the night
Night divides the day
Tried to run
Tried to hide
Break on through to the other side
Break on through to the other side
– The Doors
 
 

As I contemplate the hilarity of this, instead of pain, creativity begins to flow.  I walk duck-footed to the study to grab the tired, key-banging laptop.  Fingers are stiff and the silver box is heavy, but I lug it and the wood lap desk to bed.  Heating pad toasty, and a still snoozing pup is at my side.  He’s belly-up with paws comfortably limp.  Instead of my envy for his perfect rest, he should be envious of me enjoying the grainy, raw thrill of this 1967 TV performance of The Doors.  


I am grateful that most of the pain I feel from Undifferentiated Connective Tissue Disease is more of an insidious type that wakes me gradually.   Though mine is always present, I cannot fathom those who have no respite from instense arthritis pain.  I pray that my pain remains more casual.  At times it’s a creeping fog of cold pain that reaches each distant limb and digit.  Sometimes I have waves of pain, more often a constant ache that migrates.  Still, it is enough that it distracts me, or makes even my sarcasm go silent.  That’s a travesty, but humor remains my default so here I am.   Me and Jim, before dawn.   
 
Next we’ll wander the desert in technicolor dreams to the strains of an organ solo.
 
 
“You feel your strength in the experience of pain.” 
– Jim Morrison