I started my day with a visit to the neurologist. I am never prepared for the waiting room. Usually I am one of the few people in the waiting room who is not accompanied by a caregiver, one of the few people who can fill out my own forms. The caregiver is occasionally a professional, but often an exhausted adult child or spouse who shouts at the patient.
Today a wife shouted at her husband, “They take Medicare!”
I couldn’t hear his response.
“They don’t take Medicaid. You said they don’t take Medicare.”
She must have realized that people were staring, and lowered her voice. I made a more deliberate effort to focus on my phone.
My old neurologist’s office, when I lived in North Carolina, was harder to visit. He did a lot with head trauma. The office I currently visit has multiple doctors who focus on different things, and while many of the patients have cruel degenerative diseases, the patients, at least, aren’t teenagers.
I was referred to that first neurologist for migraines when I was in graduate school. I’d had what I thought of as “sick headaches” since I was about 11, but they happened infrequently and I thought they were related to changes in barometric pressure (actually, yes) and my sinuses (not so much). In grad school, they started to get much worse. My primary care doctor, at the student health center, prescribed allergy medication, and when I didn’t get better, sent me to an ear, nose and throat specialist.
I waited several months to see the ENT, and when I finally did he stuck a camera up my nose and told me my sinuses were fine. “You’re having migraines.”
I waited a few more months to see the neurologist. He put me on a daily medication to prevent migraines. It was effective but had an unfortunate side effect.
“I can’t remember words.” I told him at the follow-up visit. By this time, I had just started my first year as a school librarian. “Yesterday, I said to a class, ‘Okay, boys and…other…small people…who are, uh, not boys…get out your…long….skinny…yellow…”
At this point I pantomimed a pencil for him, just as I had to the class.
“Unacceptable,” he said. “Maybe if you were a bricklayer it would be okay–. ”
“But the medicine really works!”
“Do you want to become a bricklayer? ”
Another time, I was talking to him about the rescue medication. He had directed me to take it as soon as I got the first symptom of a migraine. I didn’t want to do this because sometimes I’d get the eye twinge without the full-blown migraine, and my insurance only covered four rescue pills a month.
“I will give you samples,” he said. “You must kill the baby before it becomes a monster.”
I had to leave that doctor when I moved to Charlotte, and of course I had to wait months to see a new neurologist. He put me on a new daily medication that helped some, but I was often struggling, and when I moved to Virginia, the migraines got worse again. I wound up in the office of my current doctor, who eventually decided that what I need is Botox. The insurance company denied it, but she appealed successfully, and I have been in much better shape, with far fewer and less severe migraines than I have had in about 15 years.
Whenever I feel frustrated that it took so long to get effective treatment, I think of my fellow neurology patients in the waiting room. I can usually drive myself to the doctor. I don’t need a wheelchair or even a cane. Migraines are no fun, and they are harder to live with than people who don’t have them often assume, but I am blessed to have access to care that allows me to lead a relatively normal life.