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?

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.

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.