No response from infectious disease. No answers from my doctor. Not a single thing I see. Like Robinson Crusoe, as primitive as can be. Wait and see.
For 14 days and nights I spend most of the time in my bed trying to stay warm enough not to burn, yet, not too warm that I start to perspire causing more burn. Each morning, I wake up around 5 am for the baby and sip from the glass of water that I brought up to bed the night before. It burns my tongue, tastes of tonic and, I know: No change.
For 14 days I live in fear of the muscle spasms. And suffer that reality again and again with the ever-useless Tylenol every 4 hours. I call the doctor and she puts me on Naproxen. Cyclobenzaprine. No help.
Over 14 days, I eat a bowl of soup and burn my throat pretty good, confirming I cannot determine the difference between temperatures and add it to the growing list of pains and peculiars that define my, now, very small world. I develop night sweats causing me to wake and change from my drenched clothing then back to sleep on towels that I may change, again, in the night as they burn me awake.
I develop tics upon tics. As the pain runs down the windshield of my life it gathers the things I used to be able to do and races them to the bottom of the pane until they puddle, then spray off into the cold, burning wind. I keep my sleeves pulled down over my hands. I exit each shower and descend into tears as my body burns, wet in the cool air, unable to dry and dress fast enough to escape the feeling of a thousand bees stinging my arms and legs. I then, stop showering.
Thanksgiving arrives. We pile into the car and head to my aunt’s house. I haven’t left my house in 10 days. I pretend that I am not in pain. There are some scattered questions. I say it’s a virus. They all move on. I spend most of the time crying in the bedroom trying to feed the baby, who is a mess. He won’t eat. When I get to it, my dinner is cold. The smell of warm, fall, footballing, American happiness hangs in the air and I eat mush-infused tonic. It’s one of the only meals that I’ve eaten since the soup. I’ve lost 9 lbs. My head aches.
After 14 days I know something is broken inside of me. Is it my brain? Is it my skin? Is waiting it out making things worse? Is something bad growing stronger? I believe that good health is about taking responsibility for the care of your vessel, being your own advocate and trusting your doctor. I trust her. Am I wrong?
For 14 days I explain, again and again and again, to the few people who I did tell, that I don’t know what is happening. In the coming months, they stop asking when there is no change. The people like progress. They want answers. I have none.
My mom seeks them herself. She changes from the hard-core Nurse Ratched that suggests a banana and a run around the block for a broken leg; to one, spending hours, at home, scouring her nursing books for answers for her child that has been the go-to girl, the point guard, the cleaner, the leg up, the savior, the great laugh in a tough spot.
Now, broken, sick and damaged. Disappearing.
I find 14 ways I make pain on my mother’s face but I keep the wipers on. Clearing away the evidence before me and slipping in to my burning bed and waiting for that last day when I will be better:
That day 14.
I wait in the office in the chair by the window. The thermostat in the room says it’s 73 degrees. I am freezing. Waiting for “doctor lately” to enter. No celebrity for follow-up visits, I guess, as she breezes in, “Hello. How are you? Feeling better!”
We go through my symptoms again. She says, “So if you put your hands in this sink under the running, cool water…”
NO! I cannot do that. My legs are burning in here because it’s so cold in this room, already. That is like pain at a level 9. No, I can’t. No. No. No water…
She’s standing right in front of me hunched and close. Not moving. Taking me in. She’s only 5 feet tall, but in this moment she is my giant. She is my hope.
I explain that I called infectious disease and reception said their next appointment is 3 months from now and she’d talk to the doctor and get back and I haven’t heard anything, and….
She cuts me off, “You will see them this week. I will call.”
We exit the room and she grabs the smart nurse and says, “Set up appointments with infectious disease and neurology this week for her.” We all stand staring at each other and not moving.
She snaps at the girl, “Now! Call right now.”