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.

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.