fighting the good fight

             A couple months ago as I took stock of how I felt—mentally, emotionally, physically—I realized how much has changed during the past year.  About a year ago, I left the small farm, on which I had been working and living, due to extreme fatigue, overwhelming pain, and depression.  I wanted to do what I had set out to do—to work a full year on a family farm so that when I became a political agricultural hotshot, I could back up my ideas with firsthand experience.  But I could no longer ignore my body as it screamed out, demanding to be heard.

            A few months prior to leaving the farm, I had been given the diagnoses of Fibromyalgia and Chronic Fatigue Syndrome.  The diagnoses seemed to fit—widespread pain, problems sleeping, depression—but I couldn’t accept it. I had such little energy I could only move for a few hours a day, but at least I had a legitimate excuse.  But that’s how I saw these illnesses, as an excuse, not something I wanted to learn to live with.  I was far from accepting this fate.  I wanted to get better so that I could hike the Appalachian Trail, travel through Africa, and absorb knowledge so that when I fought for what I believed, no one could refute my arguments.  Although these dreams are idealistic on anyone’s to-do list, these were the dreams for which I hoped and lived. But as everything became too great to handle, my dreams began to mock my slow, painful body. 

            By this time, I had been seeing a Physical Therapist for six months.  When I arrived at my appointments after working in the hot fields, I could hardly do any exercises.  After leaving the farm, I could save my energy for my exercises, and I did them religiously.  Soon, the pain in my legs began to decrease, and then the discomfort in my lower back diminished as well.  I saw a glimmer of hope returning, but the pain in my upper back and shoulders and neck intensified. 

            Trained in Postural Restoration, my Physical Therapist treats her patients differently than the PT I had seen when I was twelve.  No matter what the complaint, she begins treating patients from the legs up.  She doesn’t just view her patients as muscle and bone, but as people with feelings and emotions, in a body whose systems are interconnected.  Therefore, if a problem is too stubborn to respond to her treatment, she looks more closely at the feet, eyes, and mouth. 

            Starting with my feet, my Physical Therapist determined that I could use orthotic inserts—those made especially for those doing Postural Restoration—and better shoes.  I bought a pair of Asics running shoes, being sure they met her strict parameters, and got my first pair of custom-made orthotics.  After a few months, although the inserts had been helpful and my feet were happier, my PT decided that we could do better.  I went to an ophthalmologist to have my eyes checked for the first time since grade school when the school nurse gave vision tests in the hallway.  Although I retained my hawk-like vision, I was deemed in need of Plus Performance Lenses to relieve eyestrain and fatigue.  With these new glasses, my eyes were much more comfortable, but it still wasn’t the magic fix we had hoped it would be.

            Finally, after a year of seeing my Physical Therapist, she sent me to an Orthodontist in Virginia to be evaluated for Temporomandibular Joint Dysfunction.  After being poked and prodded around my neck and head, I had x-rays taken of my mouth and MRIs taken of my TMJ.  The verdict was that my TMJ was dislocated on both the right and left sides of my jaw.  The solution was that this special Orthodontist would give me an intraoral appliance to, first, relieve muscle spasms and put the dislocate discs back in the joint and, second, to correct my bite so that the discs do not dislocate again.  The hope was that by treating my TMJ Dysfunction—wearing the appliance 24 hours every day—my persistent back and neck pain would dissolve. 

            I suppose it would be a bit extreme if I said that wearing this could be added to Dante’s already existing levels of hell, but it is extremely difficult and frustrating. The appliance covers all eight of my lower back molars with a hard acrylic material.  And every six to eight weeks I head up to Virginia to have my bite adjusted.  This is all fine and well, but adjusting the placement of the lower mandible also effects the cervical spine placement, effecting, like toppling dominoes, the rest of my spine and all of the muscles and nerves connected.  All of this creates a very uncomfortable few weeks until my body gets used to its new position. 

            Presently, the appliance is built up in such a way that when I close my mouth, there is a centimeter gap between my upper and lower teeth and only half of each upper molar is in contact with the appliance—which is all I have to grind my food.  The first month I lost more weight than I could afford, but I am getting better at finding soft foods.  With every adjustment, with every day, I am hoping that this only lasts the year the Orthodontist predicted.

            A year ago I wore moccasins, looked directly at pages in a book, and ate whatever I craved.  Now, I wear shoes with orthotic, stare through magnified lenses, and eat applesauce and yogurt if I need a snack.  Although it’s not fun, when I take stock of how I feel now compared to a year ago, I wouldn’t go back.

            A couple of months ago, my diagnosis changed again.  I switched doctors because I was sick my words being brushed away, and she sent me to whom she thought was the best Rheumatologist in the area.  After another round of x-rays (18!) and blood tests, we discussed the results and she gave me a new label: Sjögren’s Syndrome.  This illness is often misdiagnosed as Fibromyalgia or Chronic Fatigue Syndrome and my symptoms fit this even better.  My doctor explained that autoimmune diseases are very difficult to diagnose, since they all have overlapping symptoms.  She said that this might not be the last label I am given, but I have decided to not worry about that. 

            When dreaming of hiking and traveling and fighting for my causes, I never thought I would first have to fight to have a so-called normal life.  But I am fighting the good fight and I have a whole team on my side—a Physical Therapist, a Psychotherapist, an Osteopathic Doctor, a Rheumatologist, and my family and friends.  Although I would never have chosen this path, it’s the one I have to follow.  So I do my exercises, I read, I write, I paint and create, I practice mindfulness, and I marvel in the little things—the fluttering butterfly, the rhythmic rain, the changing wind, the pastel sunset, the softness of my cat’s fur, the antics of my parakeet. 

            Each day when I wake up, I am not sure how my body will respond, but I get up anyways.  Some days I become frustrated and I cry and I want to give up.  But when I remember how far I’ve come this past year, I realize I have one more thing on my side—hope.  When I was twelve, I wrote a paper on the word “hope.”  My closing line went something like this: “When people utter the word “hope,” they give themselves a future.”  And how exciting it is to have found it once again.