Healthy for Whom? On Salicylate Sensitivity and Defining “Healthy” Foods

Walk with me into the grocer as I pick up some healthy items. Stroll right past the spinach, peppers, berries, and ginger. Continue past the vitamin and supplement aisles, and for good measure cruise right past the yummy teas and spices. Cross off the popular kids in nutrition: agave, soy, turmeric, spirulina, stevia, flax, guarana, chicory, monk fruit, quinoa, apple cider vinegar, fermented foods, yogurt, and whole grain anything. Reach over the dark leafy greens and select Iceberg lettuce and the white cabbage, not red. Pick up some white rice, heavens no — not brown rice, nor anything with a hull or seed. Skip the wine and the craft beer. And oh, those organic cosmetic products look soooo soothing, but wait — they contain resveratrol, aloe vera, willow bark, calendula, and rosehips. If you’re sensing a pattern here, this is what it’s like to live with Salicylate Sensitivity.
Healthy for Whom? On Salicylate Sensitivity & Defining “Healthy” Foods.Photo Credit: David Taffet
Nearly two years ago, I ended up in fight or flight mode in the emergency department with an allergic reaction. The culprits: a lovely strawberry and a popular new biologic drug. Television commercial actor Xeljanz (tofacitinib) for Rheumatoid Arthritis proved to be the catalyst that launched existing food and chemical sensitivities into the stratosphere (researchers, please take note). I had complete nasal blockage for four days, in which I could not draw air through my nasal passages and my blood pressure was low. I was sick with neurological symptoms for weeks: sunlight and breezes were uncomfortable, and my face was numb from forehead to chin. Long story short, I underwent multiple allergy tests including the blood-based ALCAT, and dozens of intradermal skin tests (single item injections gauging my tolerance level for each food). I was the one who connected the dots: the only thing linking items such as strawberries, almonds, and rose essential oil was the pesky salicylate. Add in a decade of known aspirin and NSAID allergy, and it suddenly made sense. Salicylates are chemicals that occur naturally in plants’ bark, leaves, roots, skin, and seeds that protect plants against diseases, insects, fungi, and harmful bacteria. They are also found in many medications, cosmetics, fragrances, household products, and preservatives. I have a history of unusual reactions to medications, foods, and chemicals, some going back to my teens. For the salicylate sensitive, the body rather reaches a lifetime limit and simply cannot process them. My reactions are often grade 2 anaphylaxis, and include: shortness of breath, facial and nasal swelling, lip, mouth and facial numbness, flushing, syncope, heart palpitations, lips peeling, nose bleeds, skin discoloration, rash, urinary urgency and tinnitis. An odd effect of salicylates (SALS) has been that my hands would clench for days, leaving me intermittently unable to straighten my fingers. This symptom had greatly puzzled my rheumatologist, along with my perpetual, tender rib inflammation that is not costochondritis. If you are an autoimmune patient, I cannot emphasize enough that you should consider possibly a food intolerance adding to symptoms.
Salicylate Feast: I am allergic to each and every one of these beautiful foods. Photo Credit: Ola Mishchenko
All of this underscores the fact that there is no one, true diet for each human body, and the word “hypoallergenic” is frankly, bullshit. “Healthy foods” is an oxymoron when applied to all humans. Our society is conditioned to believe that allergies consist of either: a) seasonal and dust mites, or b) the person who is at risk of death from often a single food allergy. There are far more types of allergies and sensitivities, and a host of possible symptoms. And yes, mine warrant that I carry Epinephrine. I am often asked what CAN you eat? The standard response is the Meat, Potatoes & Water Diet for the SALS sensitive. Actually there are variances in levels of salicylate content in each plant based food, and each person will have a different threshold. Despite reactions and exhaustive testing I myself have continued to question, can this even be real? The answer time and again is unequivocally, YES. In the interest of what food “should be” healthy, I have tried to push the barriers, and find myself with serious reactive symptoms, and increased systemic pain and inflammation. So how did this occur in me? The Oscar likely goes to Ehlers-Danlos Syndrome, and it’s supporting actors Mast Cell Activation Syndrome and Dysautonomia (often called the trifecta). My body simply reads things very differently, and hypersensitive reactions have nearly always been with me. I’ve had new doctors do an eye roll at my list of drug allergies, but more recently, the ER doctor brought the hospital pharmacist in four times to be certain their care was safe and adequate. I am under the care of an excellent allergist/immunologist who works with a number of Ehlers-Danlos patients who have mast cell disorders. Even she was surprised to hear that I could smell mold in homes from the sidewalk, and that I was even having reactions to the plain baking soda I used as toothpaste. Salicylate Sensitivity was new to her, to my rheumatologist, to my nutritionist, and it was new to the world-class, last resort allergy clinic where I tested. There does seem to be a number of SALS sensitive people who also have mast cell disorders, and a few who have Ehlers-Danlos. Again, researchers please take note.
Low salicylate, agreeable cauliflower, YUM!Photo Credit: Jennifer Schmidt
In the meantime, I am the girl who cooks with sea salt, fresh garlic, lemon juice, and technique to elicit flavor. I can get by with wee bits of dried spices, every few days. I can eat most meats, including chicken, beef, pork, lamb and shellfish, but am now allergic to fish, all nuts, most legumes, and every oil except canola. My staple foods are cauliflower, white cabbage, white potatoes, celery, shallots, figs, Bartlett pears, bananas, Golden Delicious apples, eggs, fresh dairy, limited wheat, rice, oatmeal and a lesser amount of carrots, onions, mushrooms, tomatoes, and watermelon. Coffee is high in salicylates, but I drew the line for my soul here, and enjoy two cups daily. I mean, I really, really enjoy them! If this were not enough fun, I also live with Mast Cell Activation Syndrome that leaves me incredibly sensitive to sunlight, to heat, chemical odors, and to that fragrance you’re wearing. Not wearing fragrance? Ask your dryer sheets, shampoo, hairspray or deodorant if they are. I am the girl who uses very specific SALS-free cosmetic and personal care products by Cleure, and a handful of lightly scented goods. If I were to eliminate all fragrance under my roof, I would have greater difficulty in public places. I am also the girl who tosses junk mail quickly, as the ink odor makes me ill, along with new fabrics, and many synthetic products — including my new hairdryer! The great irony is that I feel best when in the fresh outdoors — I simply do not suffer seasonal allergies, it is about ingesting plant matter. For this I have the greatest gratitude, as nature is one of my huge joys, and my solace. Having Rheumatoid Arthritis and Hashimoto’s also, I am in a bit of a spot medically. I can only tolerate limited medications, so it is a constant balancing, re-balancing, and a damn good bit of mettle. I adjust my sails and chart a new course. This life is not easy, but it has made me focus far more on life itself. There is so much beauty everywhere, and joy to be found or created each day. To that end, I am shifting my blog sails to focus more on interior design, and wild and bygone places that nourish my soul. Questions? Ask away. And I’d love to hear how you balance salicylate sensitivity, or your mast cell disorder.

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.


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.

FullSizeRender 22


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.

St Francious de Sales

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?

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.

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!


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.


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 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 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.






Spondyloarthropathy: How Strep Throat resulted in Juvenile Arthritis

She does not meet the Jones Criteria,” with this proclamation, the pediatric rheumatologist delayed my daughter’s Juvenile Spondyloarthritis (JSpA) diagnosis by fourteen years.

Britt was a happy blue-eyed baby, exhibiting wit and opinion early on.  Repeated tear duct infections and occasional unexplained mouth sores were a puzzlement. Then she took a flight over her bicycle handlebars in the summer of 1992.  I gently dabbed at the scratches on my adventurous little seven year old, and gasped as I brushed back her hair.  She had a huge protruding bump from the bridge of her nose to her hairline. Off to the hospital, and a scan revealed the hairline skull fracture.  At first glance, the ER staff assumed she’d been hit by a car.  A terrible fright, but as these things go it was not so severe.  No bleeding into the brain, and they told us to expect Racoon Eyes.  Turns out her immune system took the brunt of the injury. 

A few weeks later, she came down with Strep Throat.  Not alarming, of course.  However, her immune system had a mind of its own.  She was treated with Amoxicillin, and within 2 days of completing the antibiotic course, the fever, sore throat, and headache of Streptococcus would return.  Repeatedly.  During the course of these infections, the one available doctor in our small town only tested her for mononucleosis.  I know with all certainty she had strep, but could not have known how pivotal this detail would become. 

Our family has a predisposition to Streptococcal infection.  My father and uncle suffered severe strep infections in the years before antibiotics, with throats swelling nearly closed.  As a child I was severely ill at my first onset, and had repeated strep infections as a teen.  My brother is also succeptible to strep and becomes seriously ill.  My strep led to Mononucleosis, while Britt’s led to Rheumatic Fever.

Instead of recovering from strep, Britt became more seriously ill.  She had nosebleeds at night, sores at the corners of her mouth, needed long naps, lost 5 pounds, and most significantly, developed a large swelling in her neck.  When our doctor declared this to be mini Mumps, I took her to another family physician in a nearby town.  He was so alarmed that he arranged a same-day appointment with an otolaryngologist in Austin, our nearest city.

He took Britt’s history and did a fine-needle biopsy of the nodule, which revealed little due to lengthy Amoxicillin treatment.  He prescribed a strong dose of Augmentin, and said let’s try this for a week.  After that week, the nodule had not changed, so he hospitalized her.  Seven days of intravenous antibiotics had no effect on the large nodule, so he performed surgery.  Our fears ran high, because we did not know for sure that this was not a tumor.  And to keep us calm, the hospital business office phoned her room the morning of surgery, demanding $600.  I may have let fly, but this is clinically unconfirmed.

Surgery revealed a sizable abcessed lymph node.  Combined with her unusual sypmtoms in the days prior, this fits the profile of Rheumatic Fever.   Britt came home from the hospital with a surgical drainage tube protruding from her neck.  She continued antibiotics, and we had to manipulate and carefully clean the tube twice daily.  I have a thing about necks, and cannot stand a tight collar or necklace.  But you better believe I put on my Calm Parent Face and did what needed to be done.  She started Second Grade with the tube, a large neck bandage, and a box of 64 crayons.

About six weeks later, Britt crawled to our bedroom in the middle of the night.  Her wrists and ankles were locked and painful.  Somehow, we never cried through this, just calmy made decisions, remained optimistic, and held on to what was good.  Our new family doctor saw her that morning, and again arranged a swift appointment with an orthopedic surgeon.  The orthopedist took Britt’s history, and also noted a fine, pinpoint red rash on her thighs.  Lab tests were normal, but for an elevated ASO titer, indicating recent streptococcus infection.  This is remarkable in that a few weeks had passed since the active infection.  His assessment was reactive juvenile arthritis, and that clearly she’d had Rheumatic Fever.  He arranged an appointment with a visiting Pediatric Rheumatologist, four months out. 

jones-criteria-1992-search-results-sept-2016Search results for revised Jones Criteria 1992.  Britt is at middle right.

Rheumatic Fever is considered rare these days, but that doesn’t preclude the possibility.  I was  sobered to find my daughter’s second grade photo when searching the diagnostic criteria for this article.  On a positive note, I am grateful my original blog post related the diagnostic tale.  She is the little Second Grader at right, in a 1990s floral dress, with remnants of Racoon Eyes and a scar on her neck.

Awaiting her appointment, Britt continued to have painful joints that would lock up, including her wrists, ankles, hips, and rib joints.  Some days were better than others, and she did well enough with strong doses of ibuprofen.  Sitting in school would make her stiff, and oddly enough so would a warm bath.  She never cried, and really only needed help after her bath.  I’d wrap her in a thick, warm towel, and tried to not make a big deal over the seemingly new normal.  We prayed this were temporary.


The Pediatric Rheumatologist was seeing patients in an open, corner section of the main entrance at the hospital.  She wore a red business suit and heels, and brought this kind of warmth to a child in pain and a mother with questions and fears.  I explained her history, and that the orthopedic surgeon believed she’d had Rheumatic Fever.  She haughtily declared that Britt did not meet the Jones Criteria for diagnosing Rheumatic Fever.  This was January 1993, when in fact the Jones Criteria were updated in 1992.  She met the revised criteria.


She diagnosed Britt as hypermobile, but declared she did not have juvenile arthritis.  I explained that every time we tried to slightly reduce her dose of ibuprofen, she would have definite backlash in pain and stiffness.  Despite all presented, she ordered no follow-up appointment, x-rays, or labs.  We were on our own.  I dug through dusty volumes on arthritis, in the back of our small-town library.  I found only anecdotal paragraphs on Juvenile Arthritis.  My only resources were direct information from doctors, or books.  Let that sink in for a while.  How fortunate we are today to immediately find and share information.

Britt continued to have symptoms that would wax and wane, and in retrospect, recalls how often she had lower back pain sitting in elementary school.  The presumed reactive and temporary arthritis never quite went away.  When she was ten, I scheduled an appointment with an adult rheumatologist in Austin.  I related her history, and explained that her symptoms had continued off and on.  We just needed an answer, and a plan of management.  Instead, I was firmly told, “You don’t want your child to have juvenile arthritis.”  That was the depth of his curiosity, and his only accurate observation.

We moved our family to Alaska in 1996, just because.  Britt’s “arthritis or whatever-it-is,” as we came to call it, moved along with the family.  We found an excellent pediatrician, and as her joint problems continued, he scheduled a visit with a visiting pediatric rheumatologist from Seattle.  Again, this was quite a wait, but this doctor was helpful.  Given her history of strep, and extensive physical exam, he believed she had “one of the Spondyloarthropathies.”  Still, when her labs showed her to be negative for HLA-B27 marker, definitive diagnosis still eluded us.

So I became an eMom, searching on my beige Mac Performa 6320 through long winter nights.  I learned how to spell Spondyloarthropathy, read about the family of related diseases, and understood the process of her ligament pain known as enthesitis.  Despite the negative HLA-B27 result, so many things fit with the rheumatologist’s assumption.  Still her diagnosis was not proven.  What we did gain was confirmation that something rheumatic was present.  After a time, she saw an adult rheumatologist in Anchorage and some first-line arthritis meds were tried.  These did not agree well, and ultimately she was only able to handle the prescription anti-inflammatory Celebrex, and Tramadol for pain.

Britt can best paint the picture from her teens through age 20, when her diagnosis was finally confirmed.  We had relocated home to Texas, while she was finishing college in Montana — and struggling mightily.  She would call me and just say, “Start talking, Mom,” because her lower back pain was so intense.  So many times, we feared this would be the moment she would have to quit school, and we would move her back home.  However, quit is not in her vocabulary:  she speaks resiliance and adaptation.

In Montana, she came to a point where an oncologist was the only available physician who could see her.  The resident rheumatologist had been quite dismissive of her health complaints.  The oncologist told her she needed to get to the Mayo Clinic or NIH, and said, “I’m sure your parents are concerned at seeing their daughter deteriorate.”  At that, I cried.

We flew her to Dallas to see a top rheumatologist, and given her full history, he definitively diagnosed her with Psoriatic Arthritis (one of the spondyloarthropathies).  She began a biologic, and complimentary meds.  Validation of pain and suffering, and possibility was profound.  Her diagnosis has since been amended to Undifferentiated Spondyloarthropathy.  Radiography confirms the diagnosis, while available lab tests of course do not.

My message to patients, parents and physicians is remain curious. Be persistent. Do not make assumptions.  Consider the whole patient and full history.  No symptom is insignificant.  Keep researching your own condition.  Don’t be put off if a healthcare professional is condescending toward an informed patient.  Be cautious with infection, specifically Streptococcus, which can sometimes be deadly.  More and more research reveals the correlation between streptococcus and other bacterium with autoimmune arthritis onset.  Trauma itself also recognized as an autoimmune trigger. 

Researchers are also finding more and more genes directly involved with the spondyloarthopathies.  HLA-B27 is present in some populations, while new discoveries pinpoint the IL23R and ERAP1 genes as key in others.  The latter two have recently been discovered in my genetic profile, and undoubtedly were a potent mixture in my daughter’s onset.  

I have great hope that with expanded testing, fewer patients will have to wait more than a decade for diagnosis and aggressive treatment. If one family benefits, or one rheumatologist learns from my daughter’s story — my soul is happy. 

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.

National Pain Strategy: The Opioid Crisis Truth

Page through a magazine, and you see the ads: gaunt, defeated faces of those destroyed by addiction. Rheumatology patients look much the same when pain is poorly controlled.

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.

Everywhere I turn, there is another news story hammering the Opioid Crisis.  At what point did chronic pain become criminal?  The NPS data focuses on drug abuse, yet most articles about the Opioid Crisis imply negative stereotypes for patients managing chronic pain. So often there is an assumption that patients with chronic pain do not pursue a holistic approach.  If I relied solely on my opioid for pain management, I would be miserable, depressed, and would suffer significant loss of motion. My use of meditation, yoga, walking, clean eating, and creativity is self-prescribed — with unlimited refills.
We’ve been lead to believe we have a champion in our fight for functionality. Instead, implementation of the National Pain Strategy is a bit of a sales job.  I recall Marge Simpson’s lesson in the fine art of sales:


“There’s the truth (shaking head), and THE TRUTH (big grin).”

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.




Motion & Stillness: Balancing Rheumatoid Arthritis (#RABlog Week)

RA Blog Week  topic du jour is Exercise!  The answer for me is a mix of physical and mental exercise.  As I’m fond of saying, there’s no right answer, and there’s no wrong answer for each of us.
When stricken with autoimmune arthritis, it’s easy to go into protective mode. Don’t move that joint, use those hands, walk on that ankle.  That simply could not be a worse approach.  Nearly three years into my battle, I’ve found the mantra of Motion Is Lotion to be a guiding force.  Our family physician in Alaska was fond of tossing this around.  Walk in his office beneath the Chugach Mountains, and this big guy might use some blue language, rough up your neck, adjust a hip, and emphasize that motion is lotion.  I’ve heard his voice so many times over the years, and especially now with RA.
As Rheumatoid Arthritis advanced from my hands to my wrists, shoulders, ribs, jaw, hips, toes, and ankles, the easy option would be to stop moving.  Instead, I’ve slowly tied my laces and headed down my country lane.  I’m a big advocate of fresh air and have returned to favorite hiking trails.  At my worst, I clocked a twenty-minute mile.  I’m especially proud of that.
After a slow walk in crisp air, on a very high pain day.  
I also use a recumbent stationary exercise bike, an inflatable exercise ball, and do (so far) seated yoga.  There are times that this motion will help ease pain, other times not so much.  I keep my focus on the bigger picture.  I recognize that at times I must be gentle with my body, and there are those moments when the couch is the right location.  Most often, the challenge of motion is what will care for body and soul.
Equally important to my management of Rheumatoid Arthritis is the concept of stillness.  As we all know, the emotional aspect of chronic illness is perhaps tougher than the physical.  There is no separation between the two.  A spiritual approach to pain management and chronic illness is a very personal thing.  I find comfort in the mix of Nature, attending a Tibetan Buddhist temple, and remain culturally Christian, being especially moved by the stories of the Catholic saints.
View from the meditation cushion this morning.
The stillness of meditation at times brings a literal physical lifting of pain.  I feel it rise and float away.  My soul is calmed listening to bird song, a sprinkler in the distance, feeling the warmth of sunlight on my face.  More often than not, mediation consists of bringing the mind back to focus, and thinking-not thinking about the pain of the crossed ankles and stiff fingers folded at my knees.  I’m a meditative work in process.
What works in your rheum?

RA: Master of Wisdom & Tomfoolery (#RABlog Week)

Several decades in, I thought I had life figured out.  Rheumatoid Arthritis has a way of screeeching perceptions to a halt, like a phonograph needle dragged across a vinyl record.


A great master of wisdom (and tomfoolery), RA has taught me 5 things:

Patience:  The greatest lesson of Rheumatoid Arthritis is patience.  You must be patient through the worst days, the worst hours, and tough through the worst moments.  You must be patient with your emotions and allow yourself to grieve, but don’t forget to move on.  You must be patient when your pain is less, but then the tomfoolery of autoimmune exhaustion suddenly hits.  You must be patient with your family when they try to help too much, or the times they forget.  You must be patient with the general public, who can in fact be very general.  You must be patient with your doctors, nurses, technicians and staff.  Reserve your impatience for automated phone calls (i.e., free cruise to the Bahamas!).
Creativity:  Perhaps the greatest pain relief I have found is creativity.  I sit down to write, play with graphics, push paint around (poorly), or get lost in the meditative art of nature photography and I lose most perception of pain.  The minute I complete a creative pursuit, the pain seeps back into all corners, new tissues, and my psyche.  The real act of creativity will be to train my mind to live in creative distraction.  And I’ll happily take some NIH research dollars toward that effort.
Laughter:   Ah, that cliche.  Yet laughter truly is the best medicine.  There are are physiological benefits to laughter:  it raises the endorphins, relieves stress, relaxes muscles and eases pain. But the real benefit is the pure joy of life.  Our home is filled with laughter through even the worst of times.  The running joke is that we need to set up a Snort Jar:  mom pitches in $1 every time the tall chronic kid makes her snort with laughter.  I’d be wealthy in every way.
Forget the Impossible:  When RA struck me overnight, I was immediately aware of the simple things I could not do.  My perception was that I needed help with many simple tasks. This despite having raised a child with JSpA autoimmune arthritis since age seven.  There are few times she has distinctly needed physical help, and in such case it’s been to simply reach out and offer a literal hand up.  Sometimes that’s all we need, or we need to prioritize differently in a given day.  When your body fails, it is so easy to focus on the cannot.  I am still training my mind to simply do at my pace, and damn the results.
Friendship:  The physical and psychological realities of Rheumatoid Arthritis and any chronic condition hit hard.  A very difficult lesson is that old friends who are mostly healthy simply will not understand.  They may attempt to empathize, but bail when you mention a little thing like: I’m starting chemotherapy.  Silence often follows.  What I’ve had to learn is that there are different friendships for different aspects of life.  New friends in the chronic life community are my immediate source of comfort, solace, laughter, and most of all understanding.  Old friends remind me of who I was, and who I will continue to be if I allow myself.

Dear Otto(immune) #RABlogWeek

Here I am, mid-week.  And here you are, my unbidden companion.  Once again you have dictated the course of my days, my hours, and my energy.  I’ve had the best intentions.  You see, it’s the first annual RA Blog week, hosted by a delightful fellow named Rick Phillips who shares his writing at RA Diabetes.
I missed the first couple of blog topics this week, including the topic of energy.  Ironically it was this balance of energy that kept me from clicking the keyboard.  I awoke early Monday morning with ideas and goals flooding my mind.  This alone tells me that Enbrel has begun to work. Overall motion has improved, though pain levels remain the same.  Otto, you are still making your presence known in my hands, though the fingers will now straighten.  If you’d ease up on the jaw, the wrists, shoulders, ribs, hips, ankles, and toes, I’ll take you someplace nice. Realistically you’ve learned that I’ll take you anyway, because life is one big adventure.  Fresh air, architecture, history, and the sparkle of autumn light beckon.
Though the goals and motivations were there, Monday was a giant struggle.  To achieve that huge garage clean-up and gather donations for charity, require multiple talks with you.   Determination and pit stops carried me through this task that had been on my Tew Dew list for weeks (and a list is more fun when titled Tew Dew).  By the end of the day, I could barely walk and the heating pad beckoned.  Still, I forced the body to remain in motion and threw together a quick, healthy home-cooked meal.
Maintaining energy to prepare healthy food is vital not just for Otto and me, but also for my son. Before I developed Rheumatoid Arthritis, my young adult son became ill with Dilated Cardiomyopathy and Ehlers-Danlos Type 1.  Good nutrition has been a significant part of his health gains in the last four years.  As I always remind him, I need the motion, while his heart needs the rest.  And I’ve got a guy with Smiling Brown Eyes who loves my kitchen creations and we do so much for each other.

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.

1970s Old Soul and Happy Camper
The game that you will not win is the game of adventure and the pure joy of life.  I’m an old soul with a young play list, and I have places to go.  Otto, you carry a lot of baggage, so pack it — we are going places.  We’ll rest along the way and feel the cool autumn mist rise from a wandering trail.  We will savor the sights and texture, view old stone walls and fresh green leaves, hear the footsteps of generations.  Otto, pack your bags.