In July 2010, my left calf was sore and hard for two days. On day three I woke up with my left calf extremely swollen and unable to bear weight. I was hospitalized for four days, and since then, my legs haven’t been right. I have been on a quest for a diagnosis and a treatment plan. Here, is my odyssey, the A to Z List of My Disease.
A Autoimmune. Meaning my body is attacking itself. No rhyme or reason behind it, my body has turned on itself. I suffer from an autoimmune disease.
B Biopsy. January 2011, I underwent a muscle biopsy in my upper-left-calf that I now think may have left me worse than I was before the procedure. Doctors were sure that by examining a piece of the muscle, they would clearly be able to solve the mystery of my ailment. (They were wrong).
C CAT Scan. Another way doctors have of trying to look inside my body, decipher the symptoms, and offer a diagnosis.
D Discoloration. Those are the bruises that remain on my arms after nurses have acted like vampires during my monthly blood tests.
E Experts. For almost two years, I have been on an odyssey, telling my story to doctor after doctor, one expert after another. When one doctor can’t figure out my condition, I’m referred to another, most times needing to repeat my same story, explain my symptoms, undergo some of the same tests. I’ve seen a geneticist, a neurologist, a rheumatologist, an ophthalmologist, a neuromuscular specialist, and a vascular surgeon.
F Frustration - at what I can no longer do, at my limitations, my weakness, my constant pain, my continuous search for answers.
G Gratitude. For as awful as this condition is, I am grateful. Grateful that nothing life-threatening has been diagnosed. Grateful that most days I can walk and drive myself.
H Heart Test. That’s what I called the EKG, the electrocardiogram, one of the least-painful tests I’ve experienced. One more test, one more possible answer, and one more “Nope, it’s not that.”
I Invisible injury. Others can’t see it - I have no cast or outward sign of an ailment, save for occasional limping. I work, care for my son, go about my daily routines as best I can, trying to mask my daily discomfort.
J Justice (or lack of). Bad things happen to good people sometimes. Life isn’t always fair. And I have to leave it at that.
K Kinesiology. The human body is miraculous - with all its strengths and weaknesses.
L Lab Work. That’s what they call it in the doctor’s office; I call it blood tests. It hurts, makes my arm sore, leaves a bruise, and often times leaves me nauseous afterwards.
M MRI (Magnetic Resonance Imaging). From a science point of view, I can look at that machine and see it as a marvel. From a personal point of view, I look at the machine in a panic. I do not handle well the idea of my body being “put” into this extremely loud tube-like machine affording barely enough room for my arms to fit. A sedative did nothing to relax me and disguise the feeling that this machine is reminiscent of a coffin.
N Never. Never say never. Never did I fear problems with my legs. (I always worried about breast cancer). Never did I think my first night away from my son would be spent in a hospital room.
O Ophthalmologist. On my quest to find out what was wrong with my legs, I was referred to an ophthalmologist. Apparently, certain cancers first make themselves known by appearing in eye exams. (Who knew?) My eyes were fine.
P Prescriptions. As of last count, I’m up to seven pills, daily. Another prescription is taken once a week - 4 little pills that are supposedly so potent they only require a weekly dosage. I constantly monitor the clock and my meals. Some prescriptions are taken with a full stomach, some on an empty stomach.
Q Questions. During these two years, I have more questions than I have answers for. “Will this condition get worse?” (Don’t know). “Will it spread to other parts of my body?” (For a while, I had symptoms in my arm, fingers, and toes. My medication has helped those areas, but we don’t know).
R Referrals. Before I can see a doctor, I need a referral. A referral that can take weeks to process, making me wait before I can even call a doctor and make an appointment. So, part of the reason I believe this whole process has taken so long is because I have spent considerable time waiting for “necessary” paperwork.
S Side effects. For every pill, there’s a side effect. And no matter how “tough” I try to be, how much I try to ignore them (I don’t read the side effect labels on my prescriptions), some of them are impossible to ignore, namely my nightly wake-ups due to night sweats and my upset stomach.
T Terror. I’ve heard possible diagnoses ranging from cancer to rheumatoid arthritis to blocked arteries to leukemia. All results have proven negative. But it’s the waiting for the results that produces full-on, crying, howling terror. My number one thought, “I’ve got a young son.”
U Ultrasound. When I was pregnant, I loved my ultrasound
appointments - it was an opportunity to see my growing baby. Now, each ultrasound appointment I attend with trepidation. I don’t want to hear bad news, but I do want news, I want answers, I want a resolution.
V Veins (and arteries). They’re not blocked, and although I do have some varicose veins, they aren’t enough to be causing my pain. Yet, you can look at my left leg and know that something isn’t right. My legs look like a map of a busy interstate - red and blue and purple trails criss-crossing my skin.
W Walker. I was released from the hospital in July 2010 dependent on a walker and wheelchair to get around. After my biopsy, the walker came out of the closet. It’s folded and hidden back in the closet, and I hope it remains there.
X X-rays. One of the first ways doctors try to determine what’s going on inside my body. No broken bones, no clear evidence showing the cause of my underlying problem.
Y Yearn. I yearn to be “me” again. The person who didn’t have a multitude of prescription bottles on my countertop. The person who could go for long walks with my son. The person who could enjoy a shower or a bath (the hot water often makes my pain worse). The person who felt young and healthy and wasn’t worried about the “What if...”
Z Zap. In yet another test, my left leg and back were subjected to a series of zaps and shocks in one more attempt to discover if my condition was more muscular in nature.