Same As It Ever Was: Chronic Pain

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

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.

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.

Feelin’ Near as Faded as my Genes

Feelin’ good was good enough for me.
There was a time when feeling good wasn’t even a thought for our little family.  A little daughter with honey colored hair and eyes as blue as the Texas sunshine, and two adorable little boys with black hair who were often mistaken for twins.  Looking back at old family photos is poignant for anyone, but all the more so when your children are later stricken with chronic illness.  I am a strong, strong girl, and rarely dissolve into tears over the state of my children’s current health, but those photos.  That makes me break down.  To think of the could have, would have, should haves.  Yet I hold on to continued possibilities in life and the beauty of each new day.  We live in joy and laughter, and fresh air.
 
B was one year in the rheum.
 
My daughter grew up with Ankylosing Spondylitis from the age of seven, and years later my youngest son would be diagnosed first with Crohn’s Disease.  A long, emotional journey, and a string of specialists led us to a more firm and complete diagnosis of Ehlers-Danlos Type 1, Dysautonomia (POTS) and Dilated Cardiomyopathy. He is disabled at twenty-four and has had to redefine dreams, yet has shaped a beautiful life of value.  My middle son is also diagnosed with Ehlers-Danlos Type 1, but it is much milder with him.  I pray that this remains the case.
 
Fast forward a few years from the photo booth, and my common expression is:  busted flat in Baton Rouge, feelin’ near as faded as my genes.  What I would give for the genetics of health to be different, but the same genetics gave me the beautiful, generous, creative souls who form my family.
 
Janis Joplin sums up the raw emotion of Chronic Life:  

 
 
Each day we deal with the harsh realities and limitations of chronic illness, but still prefer to see it as chronic life.  Perception is everything.  I spend my days at home with my son, and we study, laugh uproariously, play cards and chess, watch movies, act goofy, meditate, straighten out world affairs, discuss history, and spend time in the fresh air.  On his lowest days, he tells me his his heart is tired, or that it feels like a “child’s heart.”  He writes and plays incredible acoustic guitar music and in the time he has been ill, has taught himself a fine command of the German language.  A new goal is to do remote work as a translator.  This is life, redefined.  
 
Still, chronic illness is a thief.  
 
Based on those early family photos, I’d trade all of my tomorrows for one single yesterday.
 
 
 

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
 
 
 

Autoimmune Diseases – But Wait!

Here I fast forward to explain the sporadic nature of my blog posting.  Ten years ago I was diagnosed with Hashimoto’s Thyroiditis, which I considered kind of a non-issue autoimmune disease.  Yes, I was sluggish, and things just didn’t feel “right,” but still.   My excellent general practitioner put everything together, despite labs being borderline.  He was absolutely spot on, and suddenly so many things were explained.  The sudden breathlessness at simple exertion, unexplained tachycardia, that episode with hours-long PVC’s, weight gain, pallor,  adult acne, hair loss, irritability, and some hip pain.  I started medication, and vitamin supplements for deficiencies and many of the symptoms leveled.  I’ve considered this diagnosis just a minor inconvenience, and didn’t give much thought to long-term concerns.   At the advice of my GP I did follow a mostly gluten free diet, though our dietician asks can you be mostly pregnant?  Busted, but I give it a good faith effort.  Mostly.
 
A few more years, and I discovered that autoimmune disease are like a bad infomercial.   They almost always come in complimentary packages, with add-on diagnoses of But Wait!   We would all rather pass on the product, and the but wait,  yet here we are.   Together in the rheum at all hours, looking at a grainy screen.
It was December 2012, and aside from that whole Mayan prophecy eliciting nervous giggles, life was steady enough.  Then I awoke one morning with hands that were curled, stiff, painful, and accordingly did not function well.   Those Christmas cookies took a lot more effort, as did every simple task.  I saw my GP who believed it looked like the beginning of Rheumatoid Arthritis.  He ordered labs & X-rays, but just like my daughter these tests revealed nothing.  So, he referred me to rheumatology.
 
Given the difficult process of diagnosis for B, I researched rheumatologists carefully.  Out were those who seemed to only know geriatric forms of arthritis.  And those with poor ratings.  I chose the guy who had great ratings and professed an interest in immunology.  Seemed a good fit for the health oddities in our family.   He was a passive guy with a blinky nature, but seemed fairly thorough.  I should have promptly left his office when he questioned if my daughter really has Spondyloarthropathy and RA, and also questioned my son’s diagnoses.  Still, finding a doctor was already such an emotional experience that I decided to stick with him.  He’d asked decent questions, but as more areas developed, he declared I simply had “widespread osteoarthritis.”  
 
I finally went back to my GP and expressed my frustration with the rheumatologist, so he took over management of my condition.  He firmly believed this was autoimmune arthritis, given the fact that I already had one autoimmune condition.  Being an osteopath and very nearly a naturopath, we tried a kinder, gentler approach to treatment.  I feared heavy-duty arthritis meds more than I feared the disease process.  So with labs still revealing nothing as far as sed rate or RA factor, we tried a regimen of low-dose naltrexone, minocycline, and low-dose hydrocortisone (more natural than prednisone).  And of course he was willing to prescribe pain relief.   Within days, my hands, feet and ankles functioned better and I had less pain and stiffness.   This approach is certainly not for everyone, but then there is no one answer for each body, each patient.  
 
Within a few short months I noticed that my right hand had an odd slant at the wrist, and the thumb had dropped to a lower position.  Since I did not have a firm diagnosis, I decided to try again with a new rheumatologist.  Enter the wonderful #rheum community on Twitter!   Within hours I had the name of a new rheumatologist who was an excellent diagnostician, and appreciated alternative and dietary approaches.   
 
I had to wait several months, and drive ninety minutes, but this rheumatologist is worth it.  At first, I did not know how to “read” him, and of course, each new patient-physician relationship is a sizing up.  He’s trying to figure out my physical needs, philosophies, and coping skills.  He is a quiet man of few words, but an incredible listener.  I soon learned that there was nothing this mad scientist missed, and as his nurse indicated, he lives and breathes arthritis.   Imagine my surprise when he called me personally at home on a Saturday to relate the results of the initial testing.  I was in a patient parallel universe, straight out of Star Trek.   Exactly fitting my neither this, nor that symptoms, he diagnosed Undifferentiated Connective Tissue Disease.   Dammit Jim, we have a plan!
 
As anyone with a chronic condition knows, having a diagnosis is paramount.  Definition is understanding, and empowering.  You know how to approach your disease and systematically help yourself through.  Without this, you feel helpless.  Thanks to my passionate Dr. Bones, I have a partner in managing my autoimmune arthritis.  I recently realized that I always say we are trying this treatment.  He appreciates my input, my concerns and my philosophies.  He has earned my respect and I am so grateful.  
Armed with the support of family, the rheum community, and great doctors, I can boldly go.   Each day, I must define what bold will be.   I push myself outside the rheum as often as possible.  And I’m learning when rest and recharge are what I need.  Sometimes I cram the tennies on painful feet and get out in the fresh air when I think I don’t have it in me.  It’s a big universe.  I’m still exploring.

Juvenile Arthritis: A Cautionary Diagnostic Tale of Rheumatology

Mini-Mumps,” he declared. 

This doctor was not our first choice, but we lived in a one red light town. The preferred doctor was near retirement and did not accept new patients. So we saw Dr. Second Best and he declared that seven year old B, presenting with sudden sore throat, high fever, and severe headache, had Mini-Mumps. This malady was apparently his own construct. When I questioned that it seemed like Strep to which our family is prone, he dismissed my concerns. Instead, he tested her for Mononucleosis. As I type this today, I am floored all over again by how ludicrous the notion. I was a young mom at the time, and I could have never foreseen how pivotal and life-changing this illness and proper diagnosis would become.
 
Of course the Monospot test was negative, and Dr. Second Best prescribed antibiotics. Still, she continued to languish with throat pain, fever, and the swelling on her neck grew to a 2” diameter lump. She lost five pounds, developed sores at the corners of her mouth, and for the first time in her life was having spontaneous nosebleeds during the night. When she did not respond to the antibiotics, we took her to Dr. Next Town. He took one look at her and thought it was strep and clearly more serious. He contacted an ENT in Austin, 45 miles away and arranged an immediate appointment.
 
The ENT was very concerned about the significant lump on the side of her neck and did a fine needle aspiration and some scans. The lump was not a tumor, so we were not dealing with childhood cancer. We were grateful beyond words. After a one-week trial of Augmentin, the ENT admitted B for intravenous antibiotics. Though still tired, she did well in the hospital, as the heavy doses of antibiotics calmed the illness. However, the lump on her neck did not respond. So it was time for surgery. As it turned out, she had an abscessed lymph node. He had to drain the abscess, and B was sent home with a soft rubber tube protruding from the surgical wound to allow the final drainage. David and I had to wear our Perfectly Calm Parent Faces as we gently tugged at the rubber tube and cleaned the area as instructed.
Second Grade
 
B started Second Grade with the tube still in place, and wore a large gauze bandage around her neck. She answered the glaring questions, but was excited to see friends and to use that box of 48 crayons. She continued to take antibiotics until the tube was removed and the surgery declared a success. However, a short time later, strep returned. This time, we saw only Dr. Next Town who never hesitated to test for strep and treat her appropriately. She would complete a 10-day course, and two days later the strep would return. It became necessary to take a prophylactic approach and keep her on daily Amoxicillin.
 
One September morn at 2 a.m., B crawled to our room in terrible pain. Her ankles and wrists were locked. This was beyond our experience and we did our best to comfort her. We did not quite know what to think, and wondered — a reaction to surgery, another infection? Dr. Next Town saw her immediately, and once again arranged an immediate appointment with a very kind pediatric orthopedic surgeon.
 
The orthopedist ran labs and did a physical exam, noting a pinpoint red rash on her thighs, and the fact that her surgical wound was slow to heal. His immediate assessment was that this was a reactionary arthritis from the illness. Even after weeks of treatment and intravenous antibiotics, she still registered an elevated ASO titer (indicates recent Strep infection). Based on this and the collection of unusual symptoms, he declared that she had Rheumatic Fever. He referred B to a Pediatric Rheumatologist and prescribed liquid Advil in a fairly strong dose for a seven year old.
 
It brings tears to my eyes to think of the pain and stiffness B had in those early days, yet how usual and tough she remained. She immediately seemed to accept that “what is” had changed, far more easily than her parents. Kids are resilient like that. We parents have to remember to embrace that good cheer, and just quietly wipe away our tears. She would become stiff after sitting for periods of time, and her nightly bath seemed to escalate rather than relieve symptoms.  After she bathed, I would help lift her out each night and wrap her in a thick, cozy towel. I donʼt believe she ever cried.
 
Sitting at her desk or cross-legged on the floor at story time was causing stiffness. So, I spoke with her teacher to explain what was going on. She was a tall, gray haired wife of a preacher, but failed the lesson on compassion. She suggested that B had enjoyed the attention of her hospital stay and surgery, and that she was trying to push my buttons. I am not making this up. This episode could comprise a blog post, but I’ll spare you the vitriol.
 
We waited four months to see a pediatric rheumatologist in Austin. During this time, B developed more pain areas including her hips and her rib joints. Her ribs would lock up and her hips would pop. As long as she remained on Advil, the symptoms were fairly controlled. Each time weʼd try to reduce the dosage, her pain and stiffness would increase. She would have good days and not so good days.
 
She saw Dr. Red Suit on a good day in January. This young pediatric rheumatologist wore stiletto heels and a bright red skirt and jacket to greet a seven year old. Not exactly warm and fuzzy. And it foretold the outcome of the appointment.
 

Dr. Red Suit examined B and peppered her with questions. When B had forgotten that her rib joints had been painfully locking up, the doctor lifted an eyebrow toward me. Her clinical notes would state that “the child could not recall rib pain.” I related to her that  the orthopedist believed B had Rheumatic Fever, and she haughtily told me that she did not meet the Jones Criteria. This was 1992, and I would find out years later that the Jones Criteria were amended that very year. She did in fact meet the new criteria.

Revised Jones Criteria, 1992
Nor did Dr. Red Suit believe that B had any form of juvenile arthritis, and declared that she was simply hypermobile. She suggested we discontinue the Advil, though I explained the cause and effect each time weʼd try to lower the dosage. Dr. Red Suit did not order labs, nor did she find a follow-up appointment necessary. We were on our own.
 
As the years went by B would still have intermittent pains, stiffness, popping joints, and was prone to ankle sprains. We would refer to it as her “arthritis or whatever it is,” and she recalls finding it uncomfortable to sit at her desk for a full day of school. When she was ten I tried again, this time with an adult rheumatologist. I explained her history, the presumed Rheumatic Fever, and her intermittent but ongoing joint pain. I emphasized that we just wanted to know why this was still occurring. After the briefest of exams, Dr. Dismissal chastened me with, “You donʼt want your child to have arthritis.”  No shit.
 
It would be fourteen years and several doctors later that B was diagnosed with Psoriatic Arthritis. This diagnosis was later amended to Undifferentiated Spondyloarthropathy, Rheumatoid Arthritis, and Sjogrenʼs Syndrome.
 
I still donʼt want my child to have arthritis. 

An Advocate for One

Back in the mid-nineties everyone was watching Seinfeld.  We caught up years later when it went to syndication.  Hubby and I were too busy raising our three little kids and restoring a 1921 Bungalow (well, just keeping the doorknobs on most days).

Our world changed when our seven year old daughter, B, awoke in the middle of the night with her wrists and ankles locked.   She’d had uncontrollable strep throat, followed by presumed Rheumatic Fever (specialists were in disagreement), and suddenly we were confronted with Juvenile Arthritis.  It was presumed to be temporary; when it proved not to be, I was suddenly that mother who was issued eye rolls by rheumatologists.   You don’t “want” your child to be diagnosed with arthritis one doctor told me.  To be fair, he was right.  I didn’t want her to have it.  Twenty-two years later, I still don’t want her to have arthritis.

For years, we contended with “normal” labs and disbelieving rheumatologists, all the while teaching our daughter to be strong. Come up with a good back story for that surgical scar!  Ride the bike, climb trees, play basketball — despite ankles that roll and rib joints that lock up and make breathing painful.  We taught her to keep dreaming.


I became an advocate for one, seeking answers.   We did not have the luxury of a second car, so while B was in school I walked my baby boys to the public library in their double stroller.  An outing in the dappled sunlight of tree-lined streets for them, and information for me.  I lifted heavy, dusty volumes off the shelf to find only side-note mentions of Juvenile Arthritis.  


This was the sole means of information for parents of children with arthritis in the early days.  We relied entirely on existing publications found in the library or browsed for newer research in book stores.  Years later in Alaska, I booked passage on the World Wide Web.  I spent long winter nights with my beige Mac Performa 6320.  The same old dusty volumes were now available electronically, and I sought information as to why her joint pain persisted and what form it might be.

 

Entrance to our neighborhood, adorned in ice fog
 
B finally saw a visiting pediatric rheumatologist from Seattle who shared my suspicion of Spondyloarthropathy.  Yet when the HLA-B27 test proved negative, this diagnosis was discounted by our local rheumatologist.   It was not until she was twenty-one that finally, finally a rheumatologist believed that she had Psoriatic Arthritis. That diagnosis was ultimately amended to Undifferentiated Spondyloarthropathy and Rheumatoid Arthritis.


The world has changed so much in the twenty-two years since B was stricken.  Information is now at our fingertips, yet diagnoses are sometimes still just as elusive.  


Despite the easy availability of information today, it is still just as important for parents to advocate.  First for your child’s medical needs, for awareness that Kids Get Arthritis Too, and to help your child find new ways to dream. Keep adventuring, even if the path takes a new curve.  You never know what you will find around the bend.


Autumn in the Chugach Mountains, Alaska
(our favorite hiking area & after-dinner drive)
 
When did Chronic Life visit you & how have you helped your child keep dreaming?