I say that “adventure” is anything we undertake which includes a degree of risk for unhappy consequences. My curiosity has gotten me into many such situations, but the one I’m writing about now is driven by my genetics. Believe me, as prone as I am to head into the wilds on a motorcycle, the journey I’ve just begun—and will be on for the rest of my life—is not one I would have chosen.

Ugly and embarrassing, but not deadly.

In my early 60’s, psoriasis began developing in the beds of my toenails and fingernails. It’s ugly and sometimes it hurts, but although I’m embarrassed when people stare at my hands, it hasn’t been something that preoccupies me. Then, in my mid-60’s, a few patches of plaque psoriasis showed up on my legs. Again, ugly, and messy because it flakes, but not something I chose to worry much about—though I’ll admit to being pissed off when a patch began developing atop my brand new Phoenix tattoo. Mostly though, I was just thankful that I don’t have it all over my body, as my brother does. This year in April, shortly before my 69th birthday, my right thumb swelled up like a sausage (dactylitis, it’s called) and I began experiencing appreciable pain in the lower thumb joint. Before long, that half of my right hand was so swollen that my plentiful wrinkles disappeared. But in spite of the pain and the fact that I could scarcely grip anything with that hand, I didn’t go to a doctor. That joint had been painful off and on for at least a couple years, though never so swollen; I assumed it would eventually resolve on its own as it had in the past. In the back of my mind lurked the words “psoriatic arthritis,” but I was busy planning for my next motorcycle adventure…and no way was a swollen hand going to derail that!

In July, wondering how riding would impact my still-swollen joint, I set off for a month of riding in Montana, one of my favorite places in the world. In spite of once being drenched to the skin by a very scary storm, several rides across plains that offered no cover from the lightning strikes surrounding me, and plentiful wincing each time I used my right hand to zip my boots or pitch my tent, it was perhaps my best ride ever! I returned home with my hand still swollen but not worse than when I’d begun my ride. Six weeks later I had a routine appointment with my primary care doctor and, as an “oh by the way”, showed him my hand. He agreed that it was probably psoriatic arthritis and referred me to a rheumatologist, to rule out osteoarthritis and rheumatoid arthritis. I agreed to the referral out of curiosity, not concern. Arthritis had plagued the women on my mom’s side of the family and I’d always assumed it would get me someday. Three weeks ago I kept that appointment. My life has not been the same since.

What my hand could look like someday…or worse.

Though now I think it odd that I hadn’t, I’d never Googled psoriatic arthritis. And when the rheumatologist looked at the hand he was shaking and declared “Yes, psoriatic arthritis!” without preamble, I simply nodded. Then he began a litany of what might be ahead of me. First he told me that the prevalence of psoriatic arthritis, an autoimmune condition, ranges from 4 to 30 percent among people with psoriasis. Yup, I’m special…and not in a good way! Then he went on to say that my paternal grandmother and brother having psoriasis stacked the odds in favor of his diagnosis, as did my nailbed psoriasis—which he said was often an early warning of psoriatic arthritis or irreversible damage to the joints.  And finally, he warned me that early treatment was imperative and proposed methotrexate to ward off the development of severe joint deformities. He said I would likely need to take it the rest of my life. That was the moment he got my full attention!

Thirteen years ago, while nursing my father through the last several weeks of his life, I promised myself something I took seriously. Dad had an impressive array of pill bottles on his bedside table, half of which were there to counteract the side effects of the other half. As he had been diagnosed with several ailments likely to do him in, it would be impossible to say which one finally did, and I strongly suspected that the chemicals in some of those bottles at least contributed to his demise. I resolved that I would not go out that way!

In the years between my father’s death and the rheumatologist’s treatment plan, I had lived my promise well. I had stopped the Prilosec I’d been on for years, said “Yes” to antibiotics only a few times, and used ibuprofen sparingly. I’d said “No” repeatedly to doctors wanting to prescribe medications to lower my blood pressure and cholesterol levels.  And, in the early months of this year, I’d kept a journal to establish relationships between what I ate and the almost constant acid reflux that I feared was creating an environment for esophageal cancer. I had dramatically changed my diet based on what I learned, and doing so had all but eradicated the GERD…and lowered my cholesterol level in the process. I had taken my health in hand and my successes had strengthened my resolve to avoid the pharmaceuticals that are so prevalent in today’s practice of medicine. But in that moment, with imaginations of gnarled hands uppermost, I said “Yes” to the methotrexate…then left that doctor’s office feeling as if I’d betrayed something sacred.

The sixty-mile return trip home that day was the beginning of my current journey—an inquiry into why I had agreed to take a cancer treatment drug that could make me lose my hair, cause nausea, vomiting and diarrhea, make my muscles ache, make me more susceptible to infection, and make me tired and cranky. And those were just a few of the “mild” side effects. The long list of more serious ones, though down-played by the doctor as infrequent, included bone marrow suppression, renal failure, visual impairment, lymphoma, and pulmonary embolism. I was clearly at a point in my life where my next steps mattered! I spent that sixty miles thinking about Death and Disability…and arrived home knowing that I was considerably more frightened by Disability than by Death. Nonetheless, when I stopped at the pharmacy to pick up the methotrexate that was supposed to lower the risk of Disability, I felt a rush of relief when I was told that the prescription couldn’t be filled yet because some paperwork was missing.

That was a stroke of luck! The delay created an opportunity for my curiosity to kick in. I researched the internet and called friends. And I began learning about alternative means of addressing the havoc wreaked when one’s immune system acts as if parts of one’s body are foreign and releases antibodies that attack healthy cells. I read that the inflammation associated with these attacks underlies the damage I had been told the methotrexate was meant to control, and I learned that this inflammation can be effectively addressed by fundamental changes aimed at making my entire body system less susceptible to it. That made a lot more sense to me than targeting a particular outcome—joint damage—of psoriatic arthritis. After all, the consequences of inflammation, itself, extend well beyond swelling my joints. Finally, I learned about Functional Medicine—a systems biology-based approach that focuses on identifying and addressing the root cause of disease. And I made a decision.

I will keep the promise I made at my father’s bedside; I will not fill that prescription. Yes, I am very, very afraid of the disfigurement and disability I may someday experience, but the truth is that ingesting a poison named methotrexate does not guarantee my safety. So I am committing, instead, to moving further along the path that I unwittingly set foot on earlier this year when I changed my diet. It turns out that quite a number of the foods I ruled out at that point are associated with inflammation…and I have already learned that I can do just fine without them. Even coffee!

My autoimmune condition is incurable, but thankfully, so is my curiosity. And I have written this blog as an invitation to others to help me shape what comes next by sharing whatever information they believe might be useful on the path I have chosen. I want to learn what you know. And perhaps, someday, I’ll be able to do the same for someone else.

6 thoughts on “Keeping Promises

  1. Nancy McCoy Nedderman says:

    May your information “journey” bring new light and help for the diagnosis you have received.
    Blessings and healing, Suzanne~
    Nancy McCoy Nedderman

  2. Susan, I’m a firm believer in the treatment of autoimmune disorders by removing all animal proteins from your diet. Animal proteins are so similar to our proteins the body quite often get confused. After all, that’s what autoimmune means. The body turning on it’s self. Don’t give it anything to cause confusion. I’d be interested in updates. You’re definitely on my mind. Tia

  3. So sorry Sue. Autoimmune diseases are so baffling. I think I’d be inclined to seriously considering Tia’s suggestion.

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