You’re Forgetting “Zebra Fever”

I am having a rough few months. The kind of rough that would make Munchausen Syndrome patients jealous. It started with my botched infusion in April that led to the lumbar puncture experience from Hell (and the resulting migraine) and continued with bronchitis at the end of May that is hanging on despite five rounds of antibiotics and two inhalers.

Last week I experienced my second official migraine. I have gotten increasingly severe headaches over the last couple years, but with the immune deficiency diagnosis those headaches were put on a backburner. Well, until April, when my head exploded, and the emergency room doctor warned me that I might start getting migraines more regularly.

He wasn’t wrong. I was hoping that last week was a fluke, but yesterday I noticed nausea in the morning, neck pain in the early afternoon, and a monster headache right after lunch. I went home after work, crawled into bed, and waited for the sweet release of sleep.

This morning my headache was present but somewhat better. However, the neck pain continues. I can barely look left or right. So I decided to follow up on the advice my immunologist gave me back in April – find a neurologist.

After speaking to several people, I was given the names of a few doctors that I was interested in approaching. I went to the website for one doctor, and was pleased to see they had an online form to schedule a preliminary visit. Among the information they requested was the following: “Primary Disease/Condition.” I scrolled through the dropdown menu, which was surprisingly inclusive and appeared to contain at least 300 conditions. These conditions included:

1. Cat Scratch Fever
2. Dandruff
3. Deer-fly Fever
4. Fox-Den Disease
5. Human Mad Cow Disease
6. Little League Elbow
7. Montezuma’s Revenge
8. Parrot Fever
9. Psychopathy
10. Sociopathy
11. Washerwoman’s Sprain

First of all, I think we can now empirically prove that animals are making us sick.

Second of all, I’m pretty sure that Washerwoman’s Sprain is a 19th-century Dickensian invention, similar to Consumption.

Third of all, would a true psychopath or sociopath really go to a neurologist (or any specialist), look at a list like this, and think, “You know what, I should probably let them know I’m a danger to society.” I watch “CSI: Law & Order,” and I can tell you that they would not.

Fourth of all, I have always liked the word “Micronesia.” (No, this is not related, but I don’t have another list in which to insert this fact.)

And finally, I was dismayed that among the 300 conditions, there was not one mention of the following:

1. Primary Immune Deficiency Disease (PIDD)
2. Common Variable Immune Deficiency (CVID)

Not that they are exceedingly widespread, but you’re telling me that more people have PARROT FEVER than an immune system disorder? Considering how many children (and adults) go undiagnosed, I find that unlikely. This is why PIDD patients are considered the "zebras" of the medical world - they appear to be an average, run-of-the-mill horse until you take the time to look closely. Something that most doctors do not do.

However, I have a proposal, one that should make everybody happy…

If we call it Zebra Fever, can it be put on that list?

A Horse of a Different Color

Prior to its migration to ABC for a long and unfunny march toward cancellation, I was an avid Scrubs viewer. I was reminded of a particular episode this afternoon in which a doctor named J.D. is discussing a difficult diagnosis with his mentor, Dr. Cox:

Dr. Cox: Newbie, do you happen to know what a zebra is?

J.D.: That patient just mocked me!

Dr. Cox: It’s a diagnosis of a ridiculously obscure disease when it’s much more likely that the patient has a common illness presenting with uncommon symptoms. In other words, if you hear hoof-beats, you just go ahead and think horsies – not zebras. Mm’kay, Mr. Silly Bear?

Well, even the brilliant Dr. Cox was wrong sometimes. According to the Immune Deficiency Foundation (IDF), “Patients with primary immunodeficiency diseases are the zebras of the medical world.”

I was looking at a chart today that showed the time between when people first manifest symptoms, until the time that they are diagnosed with an immunodeficiency.

Yours truly falls at the far end of the bar chart. I started having recurrent ear infections when I was a baby that continued throughout childhood, and was out more than 50 days my senior year of high school due to chronic sinusitis. I spent a lot of my life being sick and then being well but feeling exhausted. However, doctors told me that I simply “got sick a lot.” Even after sinus surgery and surgery to remove a giant (or as I like to think of it, “deluxe”) lymph node, no one considered looking at the bigger picture.

As the IDF points out, “Primary immunodeficiency diseases are a group of relatively rare conditions caused by intrinsic or genetic defects in the immune system.” Doctors rarely look for them. People don’t know they have them. According to research, this category of diseases occurs in one in 1,200 people. However, it’s speculated that the number would be higher if we had adequate screening at birth, or if doctors thought to look for an immune system issue when their patient had recurring infections.

I was finally diagnosed with Common Variable Immune Deficiency (CVID) after a hospital stay for an uncommon blood disorder. When I was 31 years old.

Yesterday, I wrote about a fantastic trip I trip I took during winter break of my junior year of college while studying in France. I mentioned how I got sick during those two weeks. What I didn’t mention was how sick. I had trouble sleeping in new places back then, so all the time my friend and I spent in youth hostels was time that I didn’t sleep. After a few days, my body was exhausted and I quickly developed the sniffles. By the time we wound up in Prague for New Year’s Eve, I was calling myself “Typhoid Nancy.” At midnight I rang in the new year on in the main square, giving healthy strangers viral kisses on each cheek as we wished each other a “Bonne Année.” (Still had the time of my life!)

I visited the doctor after we returned to school, and was told that along with an infection in both ears, I had sinusitis, laryngitis and bronchitis.

Many of my happy memories are colored by parallel memories of being sick.

Yet since I was diagnosed, I get sick a lot less often. I still catch everything everyone else has, but now I can get over it sooner than I used to.

I don’t usually leverage the [admittedly limited] power I have here. But it’s my blog. It’s my disorder. And there are too many people who go through hell on the way to diagnosis, and then go through hell once again as they try to navigate their new-found disease. So I’ll put myself on the line and direct you to the IDF donation page.

Granted, it’s not a sexy cause – it doesn’t come with a ribbon or a celebrity.

Hang on a minute…I’m wrong about that. It has a super sexy animal print logo!

This month, IDF launched their Think Zebra! campaign, to raise money for research.

So donate money for research, all ye horses!

Playing Dress-Up

My cousin and his wife visited New York City this past weekend. My family and I just saw them during our business trip...I mean, um, family visit...to Florida in early March. Not much time to let the heart grow fonder, but it was still exciting.

It was J's first trip to "La Grande Pomme," as I like to think the French call the Big Apple, and she had asked us what she and my cousin D should wear to see a Broadway musical. I looked at her jeans, t-shirts and flipflops and said, "Well, it's cold in New York, so you might want to put on sneakers." And that's the state of Thee-ay-tuh today – you don't dress to the nines unless you're attending a special event.

This instantly catapulted me back in time 10 years (ahem, 12 years), to junior year of college, when I was studying in France and planning my winter break excursion with my roommate, Sarah. We planned to take a two-week trek through Europe, with the halfway mark falling on Christmas in Vienna. And what does Christmas in Vienna mean? Vienna Boys’ Choir, and world-renowned opera.

Here is what I knew about Opera: it was spectacular, it was slightly boring, and, if Pretty Woman was any indicator, one was obliged to wear a gown.

Backpacking through Europe does not lend itself to packing a gown. Or more than two pairs of pants. So I settled – to the amusement of my friends – and stuffed a spring dress into my bag, insisting I would wear it to the opera. Let’s just say there were doubts.

Our first opera was in Budapest. Not my finest experience. I was sick, and the songs were in Italian. There was a digital sign above the stage that translated the words...into Czech. Watching the lyrics be translated from one language you don't know into another language you don't know, while suppressing a hacking cough and popping unidentifiable pills that a German pharmacist (or someone you hoped to god was a pharmacist) had promised you in broken English was "for the nose concern," is not particularly conducive to enjoying opera.

Christmas Eve in Vienna arrived.

It was winter. It was much too chilly for my dress. I hadn’t brought heels, stockings or a nice jacket. Or makeup or jewelry, for that matter. But I was determined to bring this vision to life. So I stepped into my green corduroy pants, threw on a long-sleeved cotton shirt and tied my French sneakers (which are similar to American sneakers, but purchased in France). And last, but not least, I shimmied into my "gown."

I remember Sarah doing a double take when I emerged from the bathroom in The Christmas Outfit.

This is my artistic rendering of what I wore to see Don Giovanni:

I looked ridiculous.

But you know what? I felt GREAT!

Sarah and I entered the magnificent Vienna State Opera and ascended the carpeted staircase. I looked down on a crowd of people wearing tuxedos and gowns. And I knew that I fit right in.

Beauty is in the eye of the beholder. And corduroy pants or no corduroy pants, Julia Roberts had nothing on me that night.