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!


If the Road To Hell Is Paved With Good Intentions…

I came home the other day and found a package on my doorstep. And it had my name on it. I hadn’t ordered anything, so it was completely unexpected. I checked the return address, and it was from one of my favorite people in the world. When it comes to surprise packages, I’m like a four year old. I ran inside (I did hold the door for my actual four year old, so I’m not totally thoughtless) and ripped into it. Turns out that the people I love know me and love me anyway.

It was a get-well package. I’m feeling better already.

And she said I don’t have to share. Which is good because I wasn’t going to. And now there’s no guilt.

I feel the love!

I feel the love!

The road to hell  may be paved with good intentions, but it turns out that the road to recovery is paved with MoonPies.

Innocence Lost

I went to the hospital last week. It was horrible. The emotional scars may never heal.

It wasn’t the doctors, though they did get my diet orders mixed up. Carbs are essential for managing my condition. When I started to have a flare-up, my personal doctor asked me to take in about 80-120 grams of carbs per meal. That’s a loaf of French bread, folks. I love my doctor. But the hospital team got my condition confused with a related one and had me on a diabetic diet. I had to choose between a muffin or a glass of juice. They did get it straightened out within a couple of days, so no harm no foul. And in the meantime my peeps kept sneaking me in stuff to keep me from dying. The doctors weren’t the issue.

The food wasn’t bad, either. “Not bad” doesn’t actually imply “good,” but I could eat it for the most part. Eventually they gave up trying to calculate carbs and just sent icky vanilla Ensure shakes on every tray. I am now using them as bowling pins. But the food didn’t ruin me forever.

The nurses were amazing. And the CNAs. They have to do some pretty awful and uncomfortable jobs in the course of their day, but they were always pleasant and accommodating and tried to help maintain my dignity. I didn’t know for three days that there were no sodas available on the floor because every time I asked my nurse for a Coke, one magical, lifesaving beverage appeared. With a smile. They made my stay bearable. Hug a nurse or CNA today. I really mean that.

The television was the problem. I knew I was a goner when we were admitted through the ER and were trapped in a room with cable television. My doctor had called ahead to get treatment set up, but it was still a lot of hurry up and wait. The TV was stuck on ESPN. The announcers continually blabbed on about NFL drafts. Which wouldn’t happen for another eight hours. Grown men playing pretend. “What will happen if Team Z chooses this quarterback? And then this team chooses that guy over there? And then they’ll invite Roger Staubach (the only football player whose name I actually know) over for  a tea party, and they’ll all wear fancy hats?” I think that last part happened. Anyway, I thought Sports Center was bad. And then someone changed the channel.

They finished my treatment and were trying to decide if I was well enough to go home. Picture it. My husband had to leave to pick up kids from school. The medical team left to let me get some “rest.” I was flat on my back, unable to stand on my own. And the Kardashians came on the screen. No remote control. No emergency call button.

I have heard of Kardashians, of course. But I thought maybe they were a line of expensive shoes or handbags or something. I was taken quite by surprise. After watching those hate-filled Barbie dolls for five minutes, I was writhing in a whole new agony as my brain cells spontaneously combusted . I begged for an anti-emetic. And for someone to change the channel. Good grief! I had been forced to pee in front of five different people with my tushy hanging out of the back of my gown, and I still had more dignity about me than that sad family.

An angel of mercy did finally appear. Though she declined my fervent request to hit me over the head with a croquet mallet, she did at least change the channel. And I am grateful. But I will never be the same.


*** I couldn’t bring myself to include any images of Kardashians. Their dead, haunted eyes give me the willies. If you’ve never heard of them, count yourself lucky. Or just Google them.

Now Where Did I Put My Groove?

I just got back from the weirdest spa. I think it was a spa. I had a nice, quiet room and an entire staff at my beck and call. I even had cable television, including a special station called “Hand Washing to Avoid Infection.”. I highly recommend the acupuncture. One needle stick, and I was out for hours. I was a little surprised at how often they asked for a urine sample or poked around for my blood, and they woke me at all hours to check my blood pressure. There were never any mints on my pillow, either. Maybe the occasional alcohol wipe or specimen cup, but whatever. Got to take the bad with the good, right? And at least this time they didn’t give me a baby when I left.

So now I’m home. Yay. I am slowly getting back into the swing of things. Yesterday, my husband took me for a car-ride, which perked me right up and confirmed my long-held suspicion that I am part golden retriever. I am no longer taking meds that restrict my ability to drive, so in theory, I am good to go. So for the first time in two weeks, I am alone with Squish. And I am terrified.

It seemed like a good idea. I can safely operate heavy machinery, after all, so how much more trouble can it be to keep up with a four year old? Quite a bit more, as it turns out. I’ll take the heavy machinery. It’s easier to win an argument with a belt sander than with a preschooler, and table saws come with an off-switch. Pray for me. I did not think this through.

Yeah, he's laying on the back of the couch. Because why not. He'll be good, right?

Yeah, he’s laying on the back of the couch. Because why not. He’ll be good, right?

Nearly Wordless Wednesday: Oh, Well.

Squish is sick. I have plans for the weekend that do not involve sick children. Kind of important plans. The last time I made these same plans, the Padawan ended up having a biopsy the day before I was to leave. On Halloween.

Anyway, we’ll be fine. We’re at the doctor’s office this very minute getting good advice. But there’s no time for a post. So you get puppies.

Pssst! The cookies are in the cabinet behind you. Pass it on!

Shhh! He’s ready for a nap!

I eat you up!

Puppies make everything better. Now, you guys keep my spot warm. I’ll be back really soon. I hope.

What’s the most inconveniently timed illness or injury you’ve ever had? Talk amongst yourselves.