Traveling Europe with Rheumatoid Arthritis – Lessons Learned

Sometimes you end up in the wrong city in a foreign country.  Like confronting the onset of Rheumatoid Arthritis, each situation requires a new language.  Testing positive for Resilience Factor is a plus.  As I wrote previously for Cure Arthritis, my husband David and I traveled to Paris, fulfilling a dream to travel abroad.  Just as in life, we had loose-knit plans, and were determined to live, laugh, and confront any bumps in the road together.

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After the 9-hour redeye flight, we were surprisingly alert arriving Paris.  The flight caused a good deal of pain and stiffness, but I was eager to greet this romantic city.  At Charles de Gaulle airport, our first task was to navigate to the Paris Metro.  A very kind French woman led us down the stairs, up the stairs, and around to find our transfer.  She spoke only a couple words of English, but her smiles and gestures communicated a beautiful welcome to France.

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The Paris Metro is an artful, historic wonder, but not very disability-friendly.  Traveling a mile or two requires multiple flights of stairs, and the system resembles an ant colony.  Finding the exit is often confusing, as Sortie (Exit) signs were sporadic.  We learned to simply follow the rush of fresh air.  Emerging on a sidewalk in the center of Paris was thrilling.  My hips, shoulders, and hands were in revolt, but I rolled luggage through the narrow maze of Paris streets to the oasis of our hotel.

We visited some of the usual sites, but were just as intrigued by the very texture of life.  Artistic detail is everywhere in France:  architectural, social, and culinary.  There is a constant forward bustle of activity, yet conversely, meals at cafes were protracted affairs, allowing time for conversation and observation.  Cell phones were scarcely observed.  It struck me that Parisians possess a brisk efficiency at the art of life.

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We planned our trip to be pedestrians, relying on the excellent train systems of Europe.  Despite public transportation, I logged as many as 6 miles per day on my Fitbit.  I cannot believe I was physically able to do this, but of course my body rebelled.  Given the difficulty with differing electrical currents, my therapeutic-grade heating pad stayed home.  In its place were menthol heat patches and a large dose of fortitude.  When the latter failed, we attempted to find a heating pad at a pharmacie.  Communication was difficult, and my only option was a hot water bottle.  Charming, but I opted out.  What was incredibly thoughtful is that each pharmacie is clearly marked with the same neon green cross sign.  Instant visibility and access when glancing down a narrow street.

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Waiting in line at historic sites was quite uncomfortable for my hips and ankles.  Still, I focused on the Now.  The Eiffel Tower is a staggering, romantic wonder of engineering, and centuries old cathedrals were alight with stained glass and collective emotion.  Despite strong will, Rheumatoid pain and exhaustion meant I simply had to cross a couple of must-do’s off of my list.  Just as I often do, I found other simple pursuits beautiful and enriching.

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Desiring to see more of Europe, we took advantage of the rail system and journeyed to enchanting Strasbourg and Colmar, France, and to Triberg, Germany, in the heart of the Black Forest.  We left Strasbourg on a pre-dawn regional train, with a transfer in Offenburg, Germany.  Having 5 minutes to transfer and not finding signage, we hurriedly asked a station employee walking past.  He replied, “You have 3 minutes!  It’s the red train!”  That’s when hilarity ensued.

I’m bumbling with luggage, the morning difficulties of RA, and boarded just as the doors on the red train were closing.  David asked two passengers, “Triberg?”  Yes, Triberg they nodded, despite being puzzled by the town’s spelling on our ticket.  Out of breath, we settled on the train and watched the morning mist rise across the rolling farmland of Germany.  Sublime.  Yet all along, I had a growing feeling that we were not on the correct train.  Then we pulled up at the Frieberg station.  Yes, Frieburg, which is pronounced “fry,” where Triberg is pronounced “tree.”  Huge crash course in foreign travel!

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There we were in the wrong town, luggage in hand, and me struggling with pain and stiffness.  So we went for coffee.  We sat and giggled over our predicament, and took the attitude that we’ll get there eventually, or we’ll explore Freiburg.  The clerk at the train station was able to re-route us on a couple of trains to reach Triberg, which is the home of the cuckoo clock.

At last we boarded the correct train, and then the movie scene played out.  The German conductor in spotless uniform and cap viewed our original ticket and queried.  We explained, and were fearful of being financially penalized.  Instead, he dryly replied in precise, but strongly German-accented English, “You did not take the most direct route.”  Lifting his brow, he traced our route in the air with his finger.

Triberg is a tiny, beautiful storybook town in the Black Forest.  The train station is more akin to a bus stop, and was situated about a mile from our little hotel.  Tugging luggage, I walked and rested, walked and rested, along the uphill route.  We checked into the quiet hotel and sat down in the attached cafe for a slice of Black Forest Cake.  The cafe was run by a lady whose manner reminded us of Mrs. Patmore of Downton Abbey.  The decor was straight out of grandma’s parlor in the nineteen-eighties:  brass light fixtures, mauve floral wallpaper, and artificial greenery.  We giggled over our cake when Jimi Hendrix’s All Along the Watchtower wafted through the cafe.  Followed by Frank Zappa.

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The most difficult day for me happened in Triberg.  Having slept on a bed that felt more like a hard box spring, every fiber of my body hurt.  RA seemed to be asking, what the hell are you trying to do??  I felt ill, and incredibly depleted.  However, I had a goal so I hydrated, put on cushioned socks, Birkenstocks, and my Cure Arthritis t-shirt.  The mountainside hike was fairly short, though quite steep.  My clogs were not the best footwear choice, but still are the most reliably comfortable.  I made my way up toward the waterfall, pausing along the way with nature photography.  The Autumn air was crisp, and we overlooked the village with plumes of smoke rising from chimneys below.  I reflected on friends for whom each step is difficult, and was filled with gratitude for my capability.

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Traveling with Rheumatoid Arthritis was made possible thanks to my biologic medication, steroid injections, opioids, fortitude, and adrenalin.  Opting for hotels as old as the 14th century, I balanced thrilling life experience vs. personal safety.  Navigating tiny, awkward bathrooms was difficult.  I also encountered stair railings that were build an age ago for people of shorter stature.  Cobblestones threatened to spill me forward, but I focused on the story they told.  Despite packing a small, capsule wardrobe, I’d do this again with half the items and fewer bottles of supplements and what-ifs.

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The single best decision was pre-paying for hotel breakfast.  I would stiffly navigate down the ancient stairway, and enjoy an array of French delights with fumbling hands.  Cafe Creme was presented with artistic flourish in warmed pitchers.  With a fussy autoimmune appetite, my favorite foods were farm-fresh yogurt and a delectable pastry, Pain au Chocolat.

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The greatest lesson of the style of travel was patience.  One of the tenets of Tibetan Buddhism is the “perfection of Patience.”  I fall so short, but this learning experience has had a profound effect.  Had I not traveled, I would have missed the wisdom of 16th century St. Francis de Sales, who observed, “Nothing is so strong as gentleness; nothing as gentle as real strength.”  As life would have it, St. Francis is the patron saint of writers and journalists.  Isn’t the world simply neato?

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.