Sarcoidosis: Part I -- Her Story

She was almost 42 (folks generally thought she was perhaps in her late 20s), working on the biggest project of her career. And she had her music. And her favorite downtime activity was walking -- about 30 miles a week. Life was okay. And then . . .

Around the first week of April in 1996, she began experiencing discomfort in her right hip. She thought it was another malady, courtesy of some genetic strain. (She tends to experience stuff that other family members have experienced, but much earlier in her life than they experienced the same malady in theirs.) She saw her doctor, who gave her a prescription and sent her home. By the following week, the right side of her body, from the neck down, did not function properly. She was literally dragging her right side!

Second trip to see her doctor: more questions, a few tests. No, she did not have lupus, lymphoma, lyme disease, or HIV. More prescriptions and an order to take a week off from work. When she returned the following week, she was terminated.

One day while dragging around the house, in a quandry, wondering what was going on with the old 'bod, she announced with a degree of preemptive defiance, that she was going for a walk . Yeah. Right. She lived four houses down from a nice little park and walked there frequently. She made it to the edge of the park and could go no farther. She sat on the curb, not knowing if she could make the walk home. After her pity party she managed to utter a short prayer: Lord, I don't know what's happening to me, but whatever happens, just let me play. She sat on the curb until someone came to fetch and take her home.

By the following Sunday, her size 9-1/2 AAA feet were the size of footballs. And when she tried to stand, she felt as if she was standing on billiard balls. Somehow, she dressed and made it to the 11:00 a.m. worship service for the church where she served. As she played the piano, daggers ripped through her clothing, pierced her skin, and sliced her muscles into slivers of flesh – or so she thought. After that she went to a Bellaire hospital. She could no longer ignore her feet. The tingling was more like a swarm of wasps or bees. The skin was so tight she thought it would pop. (Unlike the gradual swelling of the belly during pregnancy, the change was overnight.) She stayed overnight at the hospital (the food was pretty good) and was then transported to a hospital near Houston Baptist University (where the food was pretty bad -- leave it to an insurance company to mess up a good thing).

As she lay in bed the next morning her thoughts were consumed by theories and outlandish ideas of what could be happening to her. It was at that time that she felt something on her left knee -- a lump about the size of a jumbo bubble gum ball (you know -- the ones that come red, green, purple, orange, blue and speckled in a package [her favorite]). Thinking there should be another on her right knee (you know, balance, symmetry, whatever), she searched but found none. She was discharged without any answers.

Then more tests "outpatient" style: a bone scan (Have you ever seen your own skeleton? Pretty weired.) revealed big spots on her lungs. Then there were MRIs, CT scans, and a lung biopsy. Then there was a diagnosis: Sarcoidosis. Sarco-what??? We'll come back to that in Part II.

Despite the prescription medications, which were supposed to treat her symptoms, her condition worsened. Anti-inflammatories did nothing to ease the swelling and discomfort in her ankles. Pain pills did nothing to ease her pain. For several weeks her feet remained swollen beyond the capacity of any shoe. Having functioned well on 4-5 hours of sleep, this former human dynamo could not raise her hand above her head without assistance. Groping for a silver lining, she said at least I can catch up on my reading. Wrong.

She began experiencing new symptoms -- the twitching of her toes and eyelids. The eye movement was so disturbing that she could not read. Off to see an ophthamologist. You have blepharospasm. BLEPHARO-WHO??? You need to get more rest. BUT I DON'T DO ANYTHING BUT READ AND WATCH TV. Then read less and watch less TV. Okay, that's it. She's been sentenced to PRISON -- FOR HOW LONG??? Who knows?

During one of her doctor visits, the guy decided to prescribed steroids. She found it amazing that a tiny white pill could make her feel as if she would either eat a side of beef at one sitting, or was about to breathe her last breath -- all at the same time. Being her own person, she ditched the Prednisone.

While in prison, for the next year or so, the one constant in her physical life, was pain. Dull, sharp, shooting, constant, intermittent, all varieties. Other than for trips to see her doctors (the purpose of which she questioned, as nothing ever changed), she was released every Wednesday evening for choir rehearsal and every Sunday morning for worship, which she never missed (if you ever really get into doing music, you will understand playing in pain), except for one weekend -- an intentional trip to Wimberly and Southwind (her favorite bed & breakfast). The one constant in her spiritual life was God -- the glue that held her together (and does now).

About 18 months after the onset of the disease, she began to improve. She discovered the scariness of driving alone and suddenly, while on Loop 610, wondering what was her intended destination. Short-term memory was a really serious problem and accounted for opened or unlocked doors, overrunning bathtubs, clothes left to "dry" in the washer, who was just on the telephone, etc. She slowly regained some strength and a bit of energy. The pain dissipated but never stopped. Her body never lost the feeling that she had just been run over by an 18-wheeler.

Someone else finished the biggest project of her career. She tolerates people who look at her sideways when she parks in a spot designated for vehicles with "Accessible" (the new politically correct word for "handicapped") parking credentials. She rarely wears shoes with "high heels," and, being vertically challenged, that is a disappointment. (Finally, her feet shrank to a 10 AA.) There are frequent inspections for new lumps. Always there is foraging for natural remedies, anything to energize. And in choir, she sometimes cheats -- sneaking breaths in the wrong places.

The old "normal" never returned. Even after 13-1/2 years, her body is sometimes foreign to her. Still, as she takes her one daily pill, she realizes that many who live with Sarcoidosis would gladly trade places with her.

-- to be continued