Let me preface this post by admitting that I am a terrible patient. I am stubborn, opinionated, and, well, impatient. So maybe my appointment was doomed before it started.
I’ve got this weird liver disorder. It’s rare, it’s frustrating, and very few doctors have heard of it. I have a flare-up every year or so, and my doctor decided it’s probably time to seek the input of a specialist. Except there’s that bit about it being a rare disorder that no one has ever heard of. But I trust my doctor, and if she no longer feels comfortable managing this thing by herself, I have to go with it. So she made an appointment with a hematologist. Actually, she sent out a request to a bunch of doctors in a variety of specialties because there’s not an organ system this thing doesn’t affect. But the hematologist was the only one who would agree to see me. I went.
By the time I parked the car, I was already in a bad mood. It yanks my chain that they require a huge co-pay to see a specialist in the first place, then they they bilk me out of my coffee money by charging for parking. And let’s just go ahead and throw out that the individual who designed the parking garage is an idiot who be cursed to spend all eternity in a HumV circling and finding only spots marked “Compact cars.” Why would there be two exits with no signs indicating they didn’t end up at the same place? I took the exit closest to me and learned too late that all roads do NOT lead to Rome, or even to the Cancer Center. This exit led only to the ER. The only way to get to the Cancer Center from my sidewalk was to crawl through the shrubs. So I did. I can’t say that doing so improved my mood a whole lot.
My paperwork had detailed directions, including the building number. Unfortunately, the dude or dudette who designed the garage may have had a hand in the rest of the architecture. None of the buildings in the entire compound were marked with letters. I had to ask the parking lot attendant for help. She gave me a look probably reserved for morons who crawl through the bushes and gestured to the orthopedic center. I should have guessed.
When I found the suite, I checked in. The nice lady behind the counter handed me a pager. “Now,” she said, proceeding to give me a list of instructions far too complicated for 8:30 in the morning. “When this goes off, go over there to the lab. They’ll call you back. When they’re done, go down that way, first door on the left- not the hall on the left, the door, the shake your right foot three times, jump up and touch the ceiling, steal a silver hair from the head of a mage by the light of a virgin moon, fold your copay three times and chant ‘Burning money is fun,’ and then take a seat on the north-facing wall beside the of doom.'”
I blinked. “I do what?” I hadn’t had my coffee yet. She went through her instructions again. I smiled and nodded.
She sighed. “When you’re done with labs, come back here. A nurse can show you what to do.”
The pager went off. I went to the lab. They pushed up my sleeve, and a vampire in purple scrubs took seven vials of blood. Then she cheerfully pointed me down the hall from whence I had come. I found the desk of the nice lady, but she saw me coming and was conveniently turned away from me. I managed to find where I was supposed to be by shuffling a pack of Tarot cards, spitting three times, and following a line of sick people.
When I was finally called back, I was taken to a room. And left there. I brought an e-reader and a back-up book, so at least I had something to read besides the battered copies of “Web M.D” (spoiler alert- all their articles are titled “You probably have cancer. See a doctor.”), so I didn’t suffer too much. Finally, a nurse practitioner came in and told me they weren’t quite sure what to do with me because I had been scheduled to see a doctor who…wait for it… wasn’t actually working that day. She did take my history and looked briefly over the paperwork I had brought.
“Do you drink?” she asked.
“Um, no. I can’t because of this thing I have that you just said you are familiar with.”
“Not at all?”
“No. Even when I take communion, I have to go for the non-alcoholic blood of Jesus.”
She gave me the stink eye. “Do you smoke?”
“No,” I answered.
Her eyes narrowed further. “You have never smoked ever?” she asked. Because I look like a smoker? Did she smell something on me? I swear, it was just bad gas.
“No, never,” I said, crossing my heart and hoping to die.
“It says here your energy level is down.”
“Are you active for more than fifty percent of the day?”
“Um, I get up at 6:00am, and I’m going to bed at 7:30pm, so…I guess so?”
She shrugged and moved on. “Street drugs?”
“No.” Though I was never closer than at that moment.
She paused significantly. Made a note. Left.
The doctor came in at last. We chatted. He was kind, he was funny, he likes reptiles. All things we look for in a good hematologist. But he wants to go back to diagnostics. On a disorder we’ve known about for 12 years. A disorder for which my mother has the genetic marker and which has a 50% rate of inheritance. One I have all the triggers for, one I have been treated for successfully in the past. But the level of toxin in my blood was not high enough 12 years ago for 100% proof. Forget that the toxins wouldn’t have been present at all if I didn’t have the disorder.
There was no mention of attempting to alleviate my current symptoms – the lack of energy, excessive sleeping, anxiety, depression, inability to concentrate or focus, neuropathy that leads to screaming pain in my hands, the leg that has gone numb. Because we’re not ready for that yet.
We’re going back to the drawing board. And I understand. The treatment for this thing is dextrose and iron, so they have to make sure I’m not drug-seeking. It’s their bounden duty to see
expensive repeat irrefutable evidence before they shoot me up with sugar water. It’s also their duty to make sure I don’t have extra money lying around. Because then I might do street drugs. So they’re doing me a favor by running unnecessary tests.
I go back in six weeks, after they have run tests on all my bodily fluids and done a reading of my past lives. I can hardly wait. I’ll keep you posted.
What’s your worst medical story? I want to know!