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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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?
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.
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 opioids is a Hedge Fund: balancing each day’s productivity against future physical 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.
A great master of wisdom (and tomfoolery), RA has taught me 5 things:
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.
And you may ask yourself…how do I work this?