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.
