I get asked this question a lot. The short answer is “I don’t know.” But here’s the long version.
Last October, in Marrakech, I was getting ready to move to a new house. I was folding clothes, doing nothing strenuous at all, when suddenly all the muscles across my pelvis and sacrum contracted intensely. When the contraction was over, I was left with an ache deep inside my left hip socket and pain down the outside of my leg and into my left foot, following the path of my sciatic nerve. My foot tingled like it was asleep, and crackled with shooting pains.
My Airbnb host, Karim, kindly carried my pack to our new home (they were moving and I was going with them).
I’d taken my first dose of malaria meds (Lariam) the night before, a week before my move to South Africa. Some people report disabling joint or muscle pain as a side effect of this medication, often lasting for years. Even scarier, people develop long-term mental illness from the drug. I reluctantly decided to to risk the malaria and stopped taking the meds. Usually people reported symptoms after 4-5 doses, and I’d only taken one, so it seems unlikely that Lariam caused my problem, but anything is possible. (Lariam is a weekly pill given to people who will be in malaria zones for longer than a few weeks. The usual antimalarials for short term use are safer, I think).
I had a hard time walking far enough to get food. It was a problem.
I stretched my piriformis every day, worked on aligning my sacrum, walked as much as I could, rested a lot, swam a bit, but the ache wouldn’t go away. I tried to “walk it off” pushing through the pain and walking into town for meals and sightseeing, but the more I walked the more it hurt.
I went on to South Africa as planned — my memories of the trip involve having my pack on in a train station and some airports and being in blinding pain — but quickly realized I couldn’t do the volunteer work I had agreed to. (I was supposed to be cleaning monkey cages and running after mischievous baby monks to keep them out of trouble). I couldn’t even walk from the dorms to the main building. I went to a doctor, and he gave me a shot of muscle relaxer and some pills, but that didn’t help at all.
The people at the monkey rehab center were very good to me, but I knew it wasn’t fair to the other volunteers for me to stay and not do any work. I could move into town, but how would I care for myself? I couldn’t stand long enough to make a sandwich, never mind walking to the store. If you can’t walk, you can’t survive alone in the world with no car. So I went home, where I would at least have someone to help me get food.
The most affordable last-minute ticket I could find cost about $1,000 and took me through five airports. I was met with a wheelchair at each one. The journey took more than two days. The prepaid expenses I couldn’t recover included my time in South Africa, a flight to Ethiopia, a two-week tour and trek in Ethiopia, and a deposit on a dance ethnography tour of Egypt. Losing all that money was devastating; missing the opportunities was crushing.
In hindsight, I should have contacted my travel insurance company immediately. They would have helped me get a diagnosis and arranged my flight home, and they would have reimbursed my expenses. I will never make this mistake again.
I came home in early November and signed up for a healthcare plan through the exchange, but I had to wait until January 1 for my insurance to take effect. I was afraid I was permanently disabled. It was a very long and emotional wait, and I suffered through disturbing levels of depression. [Insert final breakup with Craig here, but this story isn’t about that].
I did my best to cope with the depression. I bought a wheelchair so I could go to museums and the zoo. I bought some paints and tried to learn a new hobby (I suck at painting). I tried to wrap my head around a new future with no dancing, no yoga, no hiking, and no travel in it. I was a basket case. I also did a lot of research, talked to people with bursitis, arthritis, sciatica, and other types of hip pain, and read a lot. My pain was definitely in my sciatic nerve but wasn’t coming from my spine. It was a puzzle.
When I finally got in to see a doctor, he didn’t seem to care much that I was UNABLE TO WALK! He wanted to talk about a flu shot and a routine colonoscopy. I told him that would be a hard sell, since my father died from a ruptured colon three days after a colonoscopy. The doc said “Well, don’t let that incident bother you,” and went on to tell me why they’re safer now…but my ability to listen was shut down by the idea that I shouldn’t let my father’s untimely death “bother” me. We finally agreed that we would discuss the colonoscopy after my current mobility crisis was over. I was not impressed with the doc’s people skills.
Regarding my hip, he asked me a couple of questions, didn’t listen to my answers, then told me I had bursitis. I tried to tell him that my symptoms don’t match bursitis at all (bursitis hurts when you lay on that side or touch the area; I slept on that side with no problem, my pain came from standing). He wouldn’t listen. He even engaged in a smug argument with me where he kept insisting that my pain, inside the ball socket hip joint, wasn’t hip pain, it was “back pain” because it wasn’t on the front of my body in my hip crease. OK, Doc. Whatever you call it in medical school will be fine; out here in the world, the “hip” is a three-dimensional joint with a front, a side, and a back
I was near tears from the frustration of not being listened to, but he didn’t notice or care.
He ordered physical therapy, gave me pain pills and prednisone, and scheduled a follow-up in a month. As he left the room, he said “She (??), will give you the PT referral.”
A woman came in to give me a flu shot, so I asked her about the PT. She said, “they’ll give you that at the front desk.” The woman at the front desk said “Someone will call you.” I got multiple calls — all wanting to schedule me for a colonoscopy. Those calls kept coming for weeks, but even after I called the doctor’s office to report the problem, I never got a referral for a PT.
So I found one on my own and set up an appointment. When I told her the doctor said I had bursitis, she pretty much laughed out loud. She said her job would be easier if he’d ordered diagnostic pictures and I shrugged helplessly. She ran me through some diagnostics and recommended a program for me. Between the PT and a chiropractor (who also scoffed at the bursitis diagnosis and had to do her own diagnostics using hands-on methods), I began to slowly recover the functioning of my leg. By February, I was finally able to start taking daily walks outside.
I had been in constant pain for four months, unable to stand long enough to buy groceries or cook spaghetti. I couldn’t walk far enough to get from a parking lot into a store. I was not able to get through a normal day.
But when I looked up the notes from my doctor’s visit online, in order to file my travel insurance claim, he hadn’t mentioned my pain or disability. The reason for my visit was listed as “to establish care” and he noted that I had “no health issues.” I know a responsible person would have gone back to the doctor and insisted on accurate paperwork and finished the insurance claim, but honestly I just wanted to get on with my life at that point. After four months of near-total rest and a month of rehab with the physical therapist, I was walking again, and I just wanted to get on a plane while I still could. I didn’t have much faith in this doctor’s ability to help me, and I didn’t want to start over with a new doctor in what might be another dead-end. I canceled my follow-up appointment, dropped my insurance claim, and bought a one-way ticket to Madrid.
I still don’t have a diagnosis. My pain may have been related to the Lariam I took. More likely it’s related to body mechanics. A full-time career of bellydance and yoga over a decade has no doubt left me with some odd muscular imbalances, and I’ve had serious issues with my feet and calves the last few years. I also remember having pain in that left hip in Peru a year ago, after a four-day mountain trek, that may have been an early indicator of a problem.
I have no idea whether my pain will come back, or how long I’ll be able to walk. I’m making the most of my mobility while I have it. Daily yoga seems to be keeping me on my feet for now. *knocks wood*
There’s a footnote to this story. I recently switched the state on my health insurance policy. That prompted them to send me this e-mail this morning
Seems kind of ominously insistent. What happens if I don’t view it “all the way through” by August 29? Are my benefits affected?
I looked up “Emmi Program” and found this:
Using a soothing voice, animated graphics and easy-to-read text, Emmi programs take you through your upcoming procedure or help you manage your chronic condition. Feel empowered today.
That sounds super condescending. Also, what “condition” do they think I need a soothing voice to talk me through? Was there another mistake from the doctor’s office?
Nervously I tried the link. This is what I got.
I want to write back and say: “No, Doc. Up YOURS!”