Tuesday, August 30, 2016

Bouncing My Blog to Wordpress

I'm bouncing out of this blogging platform.  Please follow me to Wordpress as I continue to blog, tweet, and advocate laughter, creativity & fresh air.   Thank you!  Kind regards, Jody


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Wednesday, August 24, 2016

Appreciating IS in the Midst of Chronic Disease


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.




T

Thursday, August 11, 2016

National Pain Strategy: The Opioid Crisis Truth for Autoimmune Arthritis Patients

Page through a magazine, and you see the ads: gaunt, defeated faces of those destroyed by addiction. Rheumatology patients look much the same when pain is poorly controlled.  

Given our family history in the trenches of autoimmune arthritis, I was asked to support, and blog about the National Pain Strategy (NPS) petition.  Well, I never take things at face value, so I decided a little investigative journalism was warranted.  I am in no way affiliated with the NPS, and opinions contained within are my own.  

There are brilliant tools for pain management in the National Pain Strategy, and it is a thing of beauty to see acknowledgement of attitudes, biases, and patient stereotypes as barriers to treatment. On the surface, this seems a reasonable and broad-based approach to caring for patients in chronic pain.  In reality and practice, rheumatology patients are now bearing the undue burden of cautionary care.

Everywhere I turn, there is another news story hammering the Opioid Crisis.  At what point did chronic pain become criminal?  The NPS data focuses on drug abuse, yet most articles about the Opioid Crisis imply negative stereotypes for patients managing chronic pain. So often there is an assumption that patients with chronic pain do not pursue a holistic approach.  If I relied solely on my opioid for pain management, I would be miserable, depressed, and would suffer significant loss of motion. My use of meditation, yoga, walking, clean eating, and creativity is self-prescribed — with unlimited refills.

We've been lead to believe we have a champion in our fight for functionality. Instead, implementation of the National Pain Strategy is a bit of a sales job.  I recall Marge Simpson's lesson in the fine art of sales:   


"There's the truth (shaking head), and THE TRUTH (big grin)."



Autoimmune arthritis patients are being lumped into this crisis purely by association with necessary treatment.  It feels as though we are under assault by legislation, medical personnel, the media, and society. Truth is, we must hedge against ourselves in treating our unceasing chronic pain. Each prescription bottle of pain medication is a Hedge Fund:  balancing each day's productivity against future activity vs current dosage and disease progression.



Despite the NPS acknowledgement that "74-96% of chronic pain patients use their prescriptions without suffering from opioid addiction," rheumatology patients are suddenly hitting roadblocks in acquiring opioids to facilitate life.  Not existence, but life.




Earlier this year, my rheumatologist moved across the country.  I wrongly assumed his diagnosis and plan of management would carry over.  After reviewing my lab results, and a brief, clothed exam, my new rheumatologist declares my disease is under control.  Ah, thank the heavens!  I responded that my labs looked the same the day I was diagnosed with Seronegative Rheumatoid Arthritis.

She responded by reducing my opioid dosage by 60%.   And just for glee, my body decided to view all NSAIDs as allergens nine years ago.  The body was done with these, finis.  Try selling an NSAID allergy to a new physician.  I am most fortunate that my previous rheumatologist documented my reaction as a severe allergy.


The mission of the National Pain Strategy (full draft here) is a brilliant and reasonable collusion of physicians, researchers, and patient input. Yet somewhere between brilliance and reality, autoimmune arthritis patients are suffering.  We are forced to ration our pain relief.  In real terms, this means rationing our functionality as productive humans -- both physical and mental activity is hampered.   People who have never experienced the pain of autoimmune arthritis cannot grasp the distraction of unrelenting systemic pain. 

I've been puzzled at the sudden focus on this Opioid Crisis, and mused at all of the other public crises we could declare.  I looked into the sudden escalation of opioid prescription abuse, and it seems my hunch is shared:
Bob Twillman, executive director of the American Academy of Pain Management said the "new initiative is a fine idea," but he's more concerned with how the National Center for Health Statistics (NCHS) reported its data this year.
"It appears to me that illegally-manufactured fentanyl is being lumped in with legal prescription opioids, accounting for the apparently huge one-year increase in prescription opioid-related overdose deaths."  He added: "I'm very concerned that this inappropriate lumping (assuming that is what is happening) could result in even greater pressure on opioid prescribing, further increasing the access problems we've been hearing so much about." - Arlotta, CJ. White House: Opioid And Heroin Overdoses Are On The Rise (Contributor) Forbes.
I have to ask, what is the motive of declaring a crisis?  The bipartisan Comprehensive Addiction and Recovery Act (CARA) was signed into law 22 July 2016.  The act authorizes $181 million in new funding each year, which must be funded annually through appropriation.

In general, the mission of the National Pain Strategy is a brilliant and reasonable collusion of physicians, policy makers, researchers, and patient input.  Still, I have to ask:  who profits in the Opioid Crisis?  Clearly not the autoimmune arthritis patient.

We are on the front lines of a war in which our immune systems fired the first shot.




Friday, September 25, 2015

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?




Thursday, September 24, 2015

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.

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 telemarketers.

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 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.





Wednesday, September 23, 2015

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 Dee


Wednesday, September 9, 2015

Same As It Ever Was: Rheumatoid Arthritis Pain



You may ask yourself...well, how did I get here?

And you may ask yourself...how do I work this?


As a rheumatology patient, you know when you arrived.  If you're lucky, you know where you are diagnostically.  With so many cross-over symptoms and comorbidities, the specific diagnosis is often less important than:  How do I work this??

Since the overnight onset of Rheumatoid Arthritis, figuring out how to work the problem has been foremost.  I approach any challenge in life with a calm bit of strength -- though admittedly after a freak-out of variable duration.  My logical mind thought through how this changes my day to day life, my future plans, and how it affects my family and those who depend on me.  I needed to mentally set an approach for the long-term.  





What I am finding more difficult is how to cope in the short-term.  The week, the 24 hours, the minutes of impatience with myself, with disease, and impatience then directed toward the world. Each moment in the rheum is one of "same as it ever was."  Pain levels increase, or ease, stiffness varies, the clumsy hands and bumbling feet and ankles can be counted upon.  On days that I feel fairly zippy, fatigue or weakness can appear suddenly like a deep pothole on this rheum highway.

Into the silent water

Another day begins -- at sunrise, or at the pain witching hour, and I again ask myself:  how did I get here?  In the worst moments I've learned to put myself into the silent water.  Float just above the surface in a warm bit of ocean.  Warm water laps and repeatedly curls softly against my cheek, providing a counterpoint to the insistence of pain.  Pain may not recede with the tide, but I'm in a better place and I feel the warm sand.



Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was...Same as it ever was...
Save as it ever was...Same as it ever was...

This is each day as a rheumatology patient.  We have to remember this is our life.  What we cannot change, we have to work around, over and through.  Yield for rest when we must, but don't forget to  follow that squiggly road sign.  Explore new ideas and new places literally or figuratively.  Instead of letting autoimmune disease dictate my every action, I'd rather ask:

Where does that highway lead to?


"Once In A Lifetime" from the album Remain in Light, written by David Byrne, 
Brian Eno,Chris Frantz, Jerry Harrison, and Tina Weymouth.