The One With All The Medical Drama

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.

Pretty much sums it up.

Pretty much sums it up.

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!

Cue Organ Music

My recovery is going pretty well. I’ve had to get serious about my diagnosis and make some changes in my life. Some days I’ve got all the energy in the world to tackle this mess. Those days, I’m all “I am woman, hear me concentrate on a high carb diet, get serious about my exercise program, drink gallons of water and avoid alcohol and prescription meds.” Sorry, Helen. Other days, I’m bored with it and am ready to try out a new disease. Today is one of those days.

A few weeks ago, my doctor set out to try to find a specialist in my particular disorder, no easy feat when you consider that fewer than 1 in 20,000 have Acute Intermittent Porphyria. But she found one. Yay, right?! And it’s only about four hours from here rather than 8. Another yay! They had to send all my records to this guy to see if I qualify to see him without more expensive testing.. It’s like sorority Rush Week. Fingers crossed that I’m considered AIP material, girls! My mom has the genetic marker, so I should be, like, a legend, right? No pushing pennies down the hall with my nose. Or peeing in yet another cup.

So then a whole lot of nothing happened. I assume that the various offices involved communicate via carrier pigeon because there was a lot of waiting. Until last week. My doctor’s nurse called me and said they wanted me to come back in for a follow up. I love my doctor, but her nurse is a bit off-putting. He takes himself too seriously. It’s rather like having a discussion with Dr. Drake Ramoray.

I asked him if he had heard from the specialist yet. There was a long pause. “Yes,” he said slowly, after a long pause. “That’s exactly what we need to talk to you about. We will see you on Tuesday.”

I would not have been at all surprised if he had told me the specialist was my half-brother and he is pregnant with my child. I rolled my eyes so hard I may have sprained them. But I’ll play along. Everybody needs their little dramas.

Will I be number one pledge this Rush Week? Will we find out if I need more pokes and prods to get the coveted appointment? Will the nurse discover his evil twin has stolen his identity and purchased a dozen toy poodles? Stay tuned!


The Worst of It

All in all, I’d have to say my recovery from my recent bout of illness is going pretty well, but it would be wrong to assume that I am completely unchanged. I’m not quite the person I once was. I’m a little weirder. I knew that it could happen. This disorder doesn’t discriminate between bodily systems. It’s an equal opportunity annoyer, but exactly how annoying came as a surprise.

The world is smaller, tiny, even. Someone has clearly been messing with the settings on my computer because I can no longer read my regular fonts. The same tricky little turd has also shrunk the labels on my medication bottles and every, single one of my books. I can’t read anything easily anymore.

I can’t keep my kids straight, either. I call the Padawan “Squish” and vice versa, and I call Girl-child by the cat’s name. I am unsure if this loss of cognitive function is entirely related to my illness, or if I’m just becoming my grandmother. Fortunately the kids are quick studies and have learned to respond to “Whatever your name is.” I’m thinking of having it embroidered on their Christmas stockings.

My spelling has gone to heck in a hand basket. I can’t quite orient myself on a keyboard, and often I look up and find that my brilliant treatise contains far more z‘s and x‘s than one might expect to find outside of Eastern Europe. The proper letters may even be there, but they are in a creative completely unrecognizable order. I’m trying to pass it off as Olde English. Are you buying?

I used to be modest. I wouldn’t even go barefoot in front of company. Now when we take a walk, it’s my husband’s responsibility to keep me from taking my pants off when the waistband of my shorts chafes my scarring and I forget that I’m standing in the school yard. When he says “For God’s sake, woman, put your clothes on! Think of the children!”  I understand he’s not rejecting me, he’s trying to keep me from getting arrested. It’s sweet, really.

But the worst of it is that for the first time in thirty years, I’m confusing my homophones. I don’t know if it’s a problem with visual perception, but I am no longer certain which word to use. They all look right write rite correct to me. A few times,  I have almost had to email sj to ask her if I had chosen the correct one when I was writing. Don’t ask me to take a high school English class right now because I would fail.

This too shall pass, right? But in the meantime, if you happen to be driving down the street and see some myopic old lady in her underwear, it’s probably me. Be sure to say “High!”