Damn It, I’m Going! Traveling with Arthritis

This Autumn I fulfilled a dream of travel, and was honored to have my article posted by the Arthritis National Research Foundation . Thank you for the opportunity to contribute! *******************************************************************************************************

“What if I have a bad day?” I said.
“Then you’ll have a bad day in Paris.”

The man with smiling brown eyes assured me that this longed-for travel was still a good idea. David and I have long talked of a trip abroad. I’ve driven the Alaska Highway, but I’ve never been to Europe. Two years ago, he sprung this birthday surprise on me over lunch. My eyes sprang a leak, and we began dreaming.

train-map-of-europe

Train map of Europe.

Our plans were delayed a season, and then a year, as my ankles had forgotten their greater purpose. I walked like a duck, and slowly. My hands have a bit of deformity due to rheumatoid arthritis (RA), and I have rotating hot spots of disease activity. So fourteen months ago, I finally agreed to try an injectible biologic drug. Soon my ankles moved more freely, but the pain in my hands, wrists, jaw, ribs, shoulders, toes and hips remained debilitating. Combined with the fatigue and flu-like feeling of autoimmune arthritis (which I affectionately refer to as “Otto”), I doubted my ability to be traveling with arthritis. Working with my rheumatologist, we tweaked our approach of pain medications time and again looking to feel better. As a result, I am enjoying far more functional days. Pain and stiffness are still a constant, but I have learned to separate the experience of pain from the enjoyment of life.

Somewhere between these seasons, I decided: Damn it, I’m going!

traveling-with-arthritis-paris-france

Paris, the City of Light.

Traveling With Arthritis:  Am I Prepared?

I have worked toward increasing my stamina to prepare for traveling with arthritis and the full days of walking and sightseeing that accompany the trip. I began to consciously stay in motion more, whether I felt like it or not. I walk daily, but began to alter the nature of each walk. Different shoes, different terrain, meditation and yoga have all aided as complimentary practices for my body and soul. Shopping for “arthritis friendly” travel shoes, handbags, and coats was painful for my hands and shoulders, but it was still fun! I chose a cross-body bag with security features and a padded strap that feels effortless. Birkenstock clogs will carry me in high style, while well-padded hiking socks should cushion my cranky feet.

As I sit to write, Paris Fashion Week is taking place. Good thing, as I’m set to reveal the LL Bean fall collection and soft bamboo shirts. It does make a girl a bit nervy figuring out what to wear to the fashion capitol of the world. Ultimately, I’m opting for my arthritis friendly comfort wear. I’ll be me, and Paris can be Paris — though I did buy my first silk scarf. Hand-painted.

silk-scarf-15

Paris Fashion Week

What If I Have a Bad Day?

The bad day I fear is the same one that made me lose 24 hours of travel preparations this week thanks to a sudden migraine. What caused the migraine? Soy, tapioca, grapes, agave? Food allergies have appeared only since the onset of RA and fibromyalgia, causing mouth numbness and full-on migraines with nausea, and light and motion sensitivity. This was what I feared — a complete loss of time. How then could I justify the travel expense?

Our family life has been dictated by chronic conditions. In recent years, my daughter has had surgeries and procedures for her childhood onset spondyloarthritis. Our son at home has Ehlers-Danlos and has gained great strength over Dilated Cardiomyopathy in the last five years. Our newlywed middle son has been coming to terms with the complexities of Ehlers-Danlos as well. Four family members living with chronic disease means time and ability to travel have been precious. Every time I hesitated over the sensibility of this trip, my kids each said, “Mom, just go!”

parisian-book-kt-tape

Parisian Chic, A Style Guide by Ines de la Fressange with Sophie Gachet

So despite my concerns we plotted our route with the goal of finding the greatest enjoyment balanced with the shortest bit of travel-within-travel time. Otto can rest on the train, while I’ll be the one watching the French countryside with a goofy grin. We are embracing the freedom and challenge of carry-on luggage only. Given the 3-ring-circus that is RA, this is sure to be rather tricky. I’m viewing this experience of traveling with arthritis as a learned art form.

Along with requisite trench coat will be my medications, vitamins and supplements, KT tape for an errant joint, and a mini cooler filled with a weekly toddy of TNF inhibitor. I’ll freshen up with a spritz of Enbrel No. 5.

With that it’s time to check your baggage RA, because damn it, I’m going!

Chronic Illness Warrior or Worrier? It’s in your DNA.

Your reaction to chronic illness is literally coded in your DNA.  Warrior or Worrier, your reaction is somewhat pre-determined.  In our Chronic Life and Spoonie patient community there is sometimes a bit of rub:   How come she always says this, and how can he do that if he really has this.  Therein lies another rub:  our susceptibility to living out our genetic profile is also influenced by diet, environment, and any schools of thought we adhere to as a matter of coping.

Heritability only explains part of the equation.  Dr. Andrew J. Shatté, Ph.D., (Chief Science Officer, meQuilibrium) wrote on the Warriors vs. Worriers topic for the Huffington Post.  He explains “why even the ‘tough’ need stress to rise to the occasion,” and how our brains process stress and those curveballs. We in the chronic community know what it feels like to suffer a direct hit.

I come from a long line of strong women.  Turns out my DNA profile confirms that family lore, and my strength.  For Christmas, David and I decided to do the Family Tree DNA Family Finder kit, and oh, how fun!  My Viking heritage is confirmed by way of Norway, Denmark, Finland, and new to me, the Orkney Islands.  Then there is my Native American Sioux heritage that no doubt brings more strength and resiliency.

warrior-gene

Warrior Gene rs4680(G;G)

Aside from the obvious thrill of confirming your heritage, or finding ancestry from new corners of the globe, testing comes with an incredible possibility.  Most any of the DNA testing services will provide the ability to download your entire DNA report. Simply upload your raw DNA files to Promethease, “a literature retrieval system that builds a personal DNA report based on connecting a file of DNA genotypes to the scientific findings cited in SNPedia.”  For a nominal fee of $5, Promethease will anonymously match your profile across like genetic populations (see a sample report here). This service is available to researchers, healthcare providers, and any customer of DNA testing services.  Single Nucleotide Polymorphisms (SNPs), indicate the precise position along a chromosome where the DNA of different people may vary. The website SNPedia functions as a gene-by-gene data base of current research for health and medical conditions.  It is continually updated with new research.

In addition to predicting my blue eyes, my DNA speaks to my own health concerns and those of my children.  Multiple times over, I have genes that indicate greater susceptibility for Spondyloarthropathy (likely my strong Scandinavian heritage). Unfortunately, this came to fruition in my daughter at age seven.   Both David and I also have multiple genes associated with Ehlers-Danlos Syndrome, and both of our sons were diagnosed with Classical Ehlers-Danlos about three years ago.  We also have random genes associated with “not specified” Dilated Cardiomyopathy, which struck our youngest son at just shy of his twenty-first birthday.  I am confident that each of my children bears the warrior gene.

Since Rheumatoid Arthritis struck me nearly four years ago, I have wondered and reflected how well I handle it physically and emotionally.  Do I fuss too much over pain, and how much am I able to separate mind and body from the pain process?  Well, survey says:  I’m a Warrior.   rs4680 at position (G;G) indicates “higher pain threshold, better stress resiliency, albeit with a modest reduction in executive cognition performance under most conditions.”  So, I have adapted well to my children having chronic diseases, and my own — though my grey matter takes a bit of a hit.

An unexpected finding, could be of huge importance:  I am a carrier of Multiple Sclerosis, and the same rs3135391(C;T) gene is associated with Lupus (SLE).  Most interesting, as I have had many Lupus-like overlap symptoms.  Initially I was diagnosed with Undifferentiated Connective Tissue Disease, which is sometimes referred to as pre-Lupus.   To see the SNPedia explanation of current data on rs3135391, click here. In addiction to medically relevant information, you can also learn handy factoids like the nature of your ear wax, reaction to coffee, or if you are a sprinter.  I’m betting you already know these things.

Our reactions to chronic illness are individualized, and we must not criticize another for how we outwardly perceive their experience.  Your reaction to stress, and your strength may not look like someone else’s.  Worriers have warrior spirits, and warriors have worrier spirits, too.  Trust me, some days this warrior is wrapped in fluff doing puzzles, watching House Hunters, and failing to accomplish needed tasks. Or most often, I live several levels of ability within a day.  I may have a burst of energy and optimism — then painxhaustion, and I hit that wall where autoimmune suddenly envelopes me in a flu-like feeling.  The point is, this warrior constantly fights within herself for strength.  And we all do this, regardless of what our DNA says about us.

There is no right answer, and there is no wrong answer.  We are human beings, and we are in these battles (and celebrations) together.  That knowledge is really what keeps this warrior strong.