pointed out, a few days in the life of a chronically ill person would make for a very unbelievable comedy show. And this is coming from the person who has thought, “No way, that’s a joke. There is no way that could be made into a TV show” one too many times. No, my friends, it’s time to face reality: my life is about as believable as a political commentator on LSD. The positive side? It can be funny as *$@$...at least in retrospect.
A life of pain, fatigue and mental confusion doesn’t sound funny. And it isn’t funny when you’re actually living it. But after the fact…yeah, pure comedic gold. Allow me to present exhibits A-E: my winter “vacation.”
Exhibit A: Christmas Day
I knew that a long trip home to CA would wear me out, so I compromised and decided to fly out on Christmas, and back to MD on New Year’s Eve. (The flights are way cheaper that way, and studying a public health isn’t exactly a high-income occupation). So my very, very kind roommate drove me to the airport. Sounds simple, doesn’t it? Well…no. It turned out that the freeway was covered in black ice. We saw multiple cars off the road, including one impressive pick-up truck that had clearly spun at least 180°. Not being bat-sh** crazy, my roommate was forced to slow down. So we got to the airport late, and I was barely on time for my flight.
“Sure,” I hear you saying, “but that happens to everyone.” Indeed it does. However, what does not, as far as I know, happen to everyone is to have another passenger die on the flight right after we hit cruising altitude. Yup, the poor woman suffered from cardiac arrest and was clearly, to those of us with any medical background, dead. They had to keep doing CPR anyway until the plane landed in Columbus, OH, the nearest airport. I was in an aisle seat, so I could tell there was no hope. Once AED has failed, that’s it folks (that’s the “CLEAR!” Heart-restarting machine you see on medical dramas).
Naturally, the woman next to me was as upset and concerned as I was. I kept her updated on what was going on, of course. As it turns out, she has a PhD too, and works as a psychologist. So she also knew the gravity of the situation. The whole episode was tragic, but with a “what the *$@$?” sort of feeling to it. I should mention that, as soon as the woman told me she was a psychologist, I knew she would diagnose me with OCD. I was wearing a facemask, and using purell every 30 seconds. I was doing this because of the five, count them five immunosuppressants I’m on or have been on in the past month, but there was no way for her to know that. Finally I explained, and she confirmed that she had indeed assumed I was OCD. Nailed that one.
Exhibit B: The G Word.
It is very hard to have a gluten-intolerant person safely living in a gluten-filled home. I tend to believe that you either have a gluten-free kitchen or you don’t. This is a little bit of an exaggeration; my roommate does have some products that would make me sick for two weeks. But since there are only two of us, I manage to avoid them, and she’s very careful to warn me about possible risks.
Unfortunately, in a house with 5 people, only one of whom is gluten-intolerant, this is just not possible to do. Through no fault of my family’s (and despite a lot of efforts to protect me), I managed to ingest something with flour in it, and was feeling pretty sick by the end of my trip.
Exhibit C: The Return of the G Word.
I got back to MD early in the evening, and my roommate and I decided to go to dinner. Neither one of us are big partiers, so it seemed like a low-stress way to celebrate the new year. Frankly, I also didn’t have the energy to go to a big party. So we went to a pub and ordered dinner…carefully checking to make sure that everything was gluten-free. I sent that poor waitress back and forth to the kitchen several times. End result? My meal was gluten-free except for the salad, which I had not asked about as (theoretically) all the ingredients were printed right there on the menu. Turns out they forgot to add “couscous,” a kind of pasta very high in gluten. End result? Sick Sam.
Exhibit D: I Hate Physicians.
My rheumatologist is a well respected clinician, and does good work. However, she is adament that painkillers should never be used to treat lupus. I’ll stop here so all my fellow lupus patients can stop laughing like hyenas on helium. She told me to email her if my lupus flared. Well, my lupus (and probable celiac disease) were flaring badly, so I emailed her. Repeatedly. Nada. Finally I said, basically, just give me some steroids, and I’ll make sure my roommate puts me on suicide watch. She agreed to that on Friday. Note that I’d spent the entire week in bed.
So my roommate (who deserves several medals of honor) went to pick up my prescriptions. But guess what? That’s right…the pharmacy hadn’t filed that particular prescription correctly, so she didn’t get it. Lovely.
At about this time I was crying in pain, unbelievably nauseous, and unable to stand. I took an anti-nausea drug designed for chemotherapy patients. It didn’t work. I took another one. Also didn’t work. Cue the dry heaves. The ER started to look like a good idea, but I hate ERs, so I tried to see if drinking some water would help me feel better. I’ll spare you the details, but let’s just say that what goes down must come up. At that point my roommate lifted me into my wheelchair (she’s a body builder, thank heavens), and took me to the ER. Where she waited with me until I sent her home…I ended up waiting 6 hours just to see a doctor. Think about this people…dehydrated patient who can’t keep water down…let’s have her sit in a dry waiting room for six freakin’ hours.
When I finally got to the ER, they took a blood count. I had to ask the doctor to look at my platelet count, which tends to be low. Guess what? It was dangerously low. And I’m talking “You could have a stroke at any moment” kind of dangerous. At this point they finally decided that, hey, maybe they should do something, so I got my IV hooked up to some fluids and a whole lot of steroids. I would like to know, however, why I had to be the one to point out the potentially life-threatening problem.
I see this post is getting ridiculously long, so I’ll leave it here and say, as any good (or bad) sit-com would say…to be continued.