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?

Guilty Pleasures

When news that Lindsay Lohan was being sent up the river hit the front page of every reputable and disreputable news source, I had one thought: why have I never been arrested?

Celebrities make it seem really, really easy. To wit:

1. Martha Stewart spent time in the pokey for lying to SEC investigators.
2. Paris Hilton violated parole and was sent to the clink for several weeks.
3. Paris' BFF, Nicole Richie, spent 82 minutes of a 4-day sentence in the slammer for driving under the influence.
4. Robert Downey, Jr. rode the prison carousel several times for possession of drugs in the late 90s.

Everybody's doing it!

You hear about celebrities being pinched on gun charges, accused of not paying taxes, committing sexual assaults, punching photographers, stiffing contractors and other unsavory acts.

Now, if I were a character on "CSI," the investigators would punch my name into the system and find no record whatsoever. And unless they've been hiding some pretty big skeletons, I can say the same about all of my family and friends.

For instance, this picture of me is hardly going to show up in the New York Times:

So am I boring?

Nope. I'm just not rich or famous enough.

Yes, regular people commit crimes too -- otherwise we wouldn't have what some people call a "prison epidemic." And my experience is likely colored by a solidly middle-class upbringing that protected me from some harsh realities. But the people being arrested in Hollywood aren't from a lower socioeconomic class. They aren't living in dangerous neighborhoods, dealing with violence on a daily basis. They aren't undereducated, with uncertain futures.

Just the opposite. Celebrities can have anything they want, any time they want, and in any quantity they want. There is no such thing as "no" in their universe.

A study released in 2006 demonstrated that celebrities have a higher rate of narcissistic personality traits than the general population. Put a narcissist in an environment with access to excess, and the recipe is deadly. And for someone with an addictive personality to be surrounded by assistants who double as friends, friends who double as an entourage, and parents who manage you instead of parent you, that leaves you without a safety net or a support system.

I actually feel for Lindsay Lohan. From all appearances, she has a father that can't shut up about her to the press and a mother who partied right alongside her. She grew up too quickly. She is a 24 year-old that could easily pass for late 30s, thanks to alleged drug and alcohol abuse.

As my mother always says, "It’s a shame that Drew Barrymore and Robert Downey, Jr. can’t take her under their wings."

I guess that's one solution.

The other is what Judge Revel is doing: sending her to prison and then an in-patient rehabilitation facility, following the violation of her probation. It was a good decision. People often claim that the legal system is harder on celebrities, but in this case Lindsay had three years to comply with the terms of her deal. Since she couldn't do that, prison time and rehab is only right.

This isn't a case of schadenfreude. I truly hope that she gets clean. She once had a promising career, and at 24, has decades of time left to work.

Hollywood (whose products I so thoroughly enjoy) along with the nouveau riche/old money/filthy rich upper class, foster a toxic environment.

Lindsay is going to have to learn how to survive it.

Until We Meet Again

I have met my people, and they are tired.

Last weekend I attended the Immune Deficiency Foundation 2010 Retreat in Rye Brook, New York. It was extremely exciting to meet people who have primary immunodeficiency disease (PID). As I have mentioned, I have CVID, one of nearly 150 diseases in this [dysfunctional] family. I was, well...I think "relieved" is the word, to find out that a lot of the stuff I experience every day is NORMAL. Feeling fatigued, achy and overwhelmed is not uncommon. I felt lucky to benefit from the experience of other women my age who had more years under their belts dealing with this disease.

I also met a celebrity -- the IDF Zebra:


Prior to this weekend, I had met only one person with a PID. He was 4 years old, and I told him that he was now my support group. He promptly went back to playing with his toy truck.

When my mother and I decided to go the IDF Retreat, we didn't know what to expect. By the time it was over we were both thrilled by what we had learned and who we had met.

What I learned:

1. Stop taking Levaquin immediately.
   
   I spoke to a doctor following a presentation about antibiotics, and mentioned that I was taking Levaquin for bronchitis and had begun to experience muscle and joint pain. He looked concerned and proceeded to scare the bejeezus out of me by explaining that this side effect could lead to long-term tendonitis and fatal muscle ruptures. I proceeded to go home and sleep for 19 hours on Sunday, another lovely side effect. Needless to say, I'm done with Levaquin for ever, thank you very much.
   
   
2. If I ever feel like treatment is too overwhelming, I need to just suck it up.
   
   I learned from several parents that their children administered their own treatments. Mind you, these children were 5 and 6 years old. I am at least FOUR TIMES their age (ahem...) so I really have no excuse for whining. If someone who is still expected to throw periodic temper tantrums and demand cookies for breakfast is mature enough to handle weekly subQ infusions, then I should be too.
   
   
3. The Doral Arrowwood Hotel in Rye Brook New York has the most amazing breakfast and lunch buffets.
   
   At lunch, we spotted mussels in a fresh broth and my mother sprinted over to get us a plate to share. Seriously, it was ridiculous, and I'm going to crash another event there so I can get some more of that buffet action.

I learned a lot more than that -- and will continue to write about it -- but thanks to a Levaquin-induced stupor I can barely keep my eyes open. Sweet dreams, my fellow PID-people.

May we get the rest we need and the cure we deserve!

Red Herrings: A Love Story

Friends, I am in love! And her name is Anna Katherine Green.

Here is a picture of my beloved:

Let me tell you about how we met.

I had just finished reading Stieg Larsson's "The Girl With the Dragon Tattoo" for my book club, the Manhattan Chapter of the Northeast Regional Book Club Association. (A name I made up when I invited celebrated author Charlie Stella to come speak to us, and it stuck.) I decided I needed a palate cleanser before starting Larsson's second book, and a name popped into my head: Agatha.

Dame Agatha Christie, the grande dame of mystery fiction. Reading her books as a teenager made me fall in love with the genre.

(As a college student I visited The British Museum, where on the tour our guide discussed artifacts from archeological digs at Arpachiyah, Iraq. She mentioned that the man in charge of the dig was Sir Max Mallowan, and asked if we knew to whom he was married. I raised my hand, and she glanced over and nodded at me.

"Agatha Christie," I said. Her face lit up.

"Archeology buff?" she said.

"No," I replied. "Mystery fan.")

Like an addict discovering temptation, I started to explore other authors from the "Golden Age of Mystery Fiction," a term commonly used to refer to works from 1920s and 1930s. This included Ngaio Marsh, Dorothy Sayers and G.K. Chesterton. It was chicken soup [laced with arsenic] for the soul.

But when the name "Agatha" popped into my head last week, it had been years since she and I had sat down to tea and crumpets together. Sure, I watched the Miss Marple mysteries on PBS, but that wasn't the same. Oh, and I rented Hercule Poirot DVDs with David Suchet. And there was the updated Miss Marple series. That was good too.

Still, there had been no actual Christie book in my hands in the longest time.

In search of a bargain, I went to Amazon's Kindle store and looked at the cheapest mysteries they offered. (I am no great fan of the Kindle app for iPhone, which is far inferior to the eReader and Barnes & Noble apps, but they do have some cheap-as-dirt books.) I found a bargain -- for $2.99, an anthology of short stories that appeared to include some Dame A. Well...well...

I plunked down my hard-earned change, downloaded the book, and was shocked to find, instead of the expected 50 stories -- FIFTY BOOKS! FOR $2.99! Once my heart started again, I virtually cracked open a classic Tommy-and-Tuppence mystery (one of Dame A's less-popular crime-fighting duos). And then a second.

When I was done, I perused the table of contents and found Anna Katherine Green. Never heard of her. But I decided to give it a try.

The first thing I noticed was the use of dashes in dates and place names. For example: "Nancy Smith, was going to -----, New York, on September 30, 20--."

This was an immediate throwback to reading "Bartleby the Scrivener," by Herman Melville, published in 1853. Not that Melville was the only writer of that era who employed the privacy dashes, but he was the only writer I read in high school who did. And I only have access to my memory. (For now. I'm sure Apple is working on something.)

I saw those dashes and wondered who this poseur was, pretending to hearken back to an earlier era. As I read on, curiosity soon took hold, and off I went to Wikipedia. What I learned bowled me over:

Anna Katharine Green (November 11, 1846 – April 11, 1935) was an American poet and novelist. She was one of the first writers of detective fiction in America and distinguished herself by writing well plotted, legally accurate stories. (Courtesy of Wikipedia.)

How had we never met?

When I read Agatha, and Dorothy and G.K., I didn't know I would fall in love. I just tore through every word they wrote and didn't appreciate how one can never read a book twice for the first time.

Now that I'm reading Green's "The Millionaire Baby," I'm taking my sweet time.

(P.S. I'm writing this blog from a secret passage!)

Strike Me, Spare Me

Last Saturday I celebrated an early Father's Day with my family -- what I called the "'Smith' Family Pre-Father's Day Extravaganza." It consisted of bowling with my parents and brother and a lovely dinner, followed by a showing of "The Blind Side." I should point out that I call all events "The 'Smith' Family [Name of Holiday] Extravaganza." Of course, I'm the only one in my family who does this. I think it makes everything more special. Try it sometime.

(In the future, I'm considering switching it up and using "Celebration" instead of "Extravaganza." Opinions?)

This is me -- in New Jersey, if you couldn't tell -- right after enjoying our delicious meal of Cuban food:

(It looks like I'm posing, but really I'm demonstrating my sense of direction, which I do not have. At all. When I started driving, I repeatedly asked my parents to draw maps to places I had known all my life. My mother, who was born with a compass in her brain, was flummoxed by this. She gave in and started drawing maps for me when my father explained that they had agreed to love me no matter what. Later, when my brother inherited my car, he opened the glove compartment and was buried under dozens of scraps of paper bearing all the places I had driven during the previous four years.)

In any case, my pre-Father's Day "Extravaganza" made me realize something important -- I am very lucky to like my family.

I always find it strange when people tell me they aren't close to their siblings. And they seem to find it equally strange when I say that my brother and I are good friends. My family is no Norman Rockwell painting, but he was painting an ideal that never existed. In real life, all of those scenes would have been captured about five minutes before everybody started arguing.

I know this, because my picture was taken about five minutes (give or take 15 hours) before we all started arguing. However, when we calmed down and apologies were exchanged, we sat down at the dinner table and carved our Thanksgiving turkey.

Wait...I think I'm flashing back to Rockwell's "Freedom From Want":


What I meant to say was, we sat down at the kitchen table and planned a family vacation.

Or as I called it, "The Smith Family Vacation-Planning Extravaganza."

Pharmville

Since I was diagnosed with Common Variable Immunodeficiency (CVID), I sometimes catch myself thinking that I am OLD. Perhaps this is because I qualify for home nursing, or because my depressed immune system so often makes me feel tired. I had a dream the other night that I was going bald (not a problem for women of any age in my family), and I woke up and ran to the mirror, where I inspected my very-much-intact tresses.

Over the past couple years I have periodically received this postcard:


Being actively pursued by a cemetery also makes me feel old. However, I feel progressive, too, because even though I am not married, my fictional husband appears to have taken my last name. It's either that, or "Nancy" is the next big thing in gender-neutral names. The first postcard arrived right after I returned from a four-day stay in the hospital, when I was diagnosed with a platelet disorder (which turned out to be the first symptom of the CVID). I worried for a moment that the hospital had put me on some kind of list. You know..."People Who are Going to Die In the Near Future, Even Though We Lied and Told Them They Would Be Absolutely Fine."

And now, like many old people, my house is turning into a pharmacy. Four months ago, I started doing home infusions of IVIG (intravenous immunoglobulin) with a visiting nurse. The medication and supplies were shipped to me in a large box. This is what it looked like when I unpacked everything, for a SINGLE monthly infusion:



There's something about receiving your very own IV pole that cements the idea that you have now begun a slow descent into old age.

And then, as I mentioned in a previous post, I had an unfortunate experience with IVIG that landed me in the hospital several weeks ago, begging for pain medication. (Ah...nostalgia!) This prompted my immunologist to change my treatment to ScIG, subcutaneous immunoglobulin, which is something that patients can self-administer weekly after two or three training sessions.

So a new box of supplies arrived, followed a few days later by a nurse. He ran me through the steps, gave me written directions and completed my first treatment. The medication is absorbed under the skin, which makes the area receiving treatment tender. Frankly, I was sore and lumpy. (Lumpy: my new nickname.)

I was determined to become proficient in two sessions, so I could finally stop asking for time off from work. After my first session I hunkered down and got serious. I retyped all 15 steps so I could drill them into my head. I watched the Vivaglobin training video about a dozen times, often while holding the supplies in my hand, so I could practice. It was like being back in school and cramming for final exams.

By the time the nurse arrived, I was almost excited. Which was unusual for treatment day. But I breezed my way through, and he told me I had prepared more than any other patient he had seen before. He was confident I would be fine.

For the first time in a while, I was actually confident I would be fine, too. Granted, ScIG isn't fun, by any means. I still have to take Benadryl, because it makes me itch. And whichever area you chose to stick with the four administration needles is quite sore for the next day or two.

However, I finally realized that even with all of that, ScIG is a MUCH better solution for me. What it represents is treatment on my own time – no more half-days off from work (or more, depending on side effects). No more planning my life around the weekend I needed to recuperate from the IVIG. I will finally be able to take the medication, a small pump and supplies with me wherever I want to go.

Ultimately, it means freedom.

And nothing screams "I'm still young!" like freedom.

It's a Miracle!

Talk about truth in advertising -- I do believe that the woman on the left is going to lose weight...

...in about nine months.

I Can See Clearly Now, the Pain is Gone

Dear Readers,

It has been more than a month since I last blogged. And lo! the wondrous places I've been! Mainly: an emergency room in Queens and an emergency room in Manhattan.

Let's hop into the Wayback Machine and pretend it's April 2, 2010. I am at home, awaiting a new nurse, so I can get my third at-home infusion of intravenous immunoglobulins. She arrives, seems nice, bangs out the infusion in record time, and leaves. I feel tired, as per usual, and crawl into bed for a nice nap.

BAM!

I wake around 10 p.m. with a massive pain in my neck. Excruciating. Unable-to-move-my-head pain. I grab a heating pad, wander over to Bob (my recliner), and settle in for a heat-and-greet session.

By the next morning, I remain awake and immobile. But I know that muscle pain is a potential side effect of the infusion. So I wait it out. I call Dr. Mom, who makes me promise to go the hospital if it doesn't get better. Reluctantly, I agree.

By Sunday morning, I had traded "reluctant" for "Dear God, please give me pain medication!"

So I called a car service, hustled over to my local ER at 7 a.m., and was seen pretty much immediately. The concern was clear on my doctor's face -- I presented with fever, headache and neck pain. We had to rule out an uncommon but potentially dangerous side effect of the infusion: meningitis.

After I was given Percoset for the pain, I waited for my initial blood tests. The demented elderly woman in the next bed, who was restrained to her gurney, kept trying escape so she could meet her husband at 3 p.m. "He has a brain tumor, but I think he'll be ok," she kept saying.

I reassured her she wouldn't be late, and perhaps she would like to stay in bed for a few more minutes. I was having visions of her breaking a hip as she feebly launched herself out of the gurney.

"I think the nurse stole my handbag!" she replied. "Good thing she doesn't know I brought two!"

The doctor returned with good news -- the blood tests were clean. I was ready for pain medication and marching orders, but he shut that down. We still had to eliminate meningitis. Which meant a lumbar puncture, commonly known as a "spinal tap."

Unlike the eponymous movie, this experience was a lot less funny.

This was me on Percoset, prior to the first spinal tap:


I was told it's like an epidural, but without the pain relief at the end.

After the SEVENTH attempt, the doctor told me that due to my "physique" (i.e., my plus-size stature), he was having trouble getting the needle inserted correctly. We switched to a bigger needle, to no avail. He kept reiterating that my size was an issue. I had been understanding up until that point, but I suddenly yelled (whimpered, actually), "What do you do with your other fat patients?!"

On the tenth try, with my parents listening from outside the door, he finally did it. I felt triumphant. This is me, right after, looking triumphant:

Old motto: No spinal taps!
New motto: No more than 10 spinal taps in 2010!

After confirming I was meningitis-free, I was released with Percoset for the neck pain, and orders to follow up with my doctor. My parents whisked me off to New Jersey to recuperate.

However, recuperation was not in my near future. I woke up on Monday and felt funny. I spent that morning clutching my head in pain, crying, vomiting, then apologizing to my father for putting him through this. Every time I tried to sit down, I had to run back to the bathroom to throw up. I was so exhausted and could barely walk from the previous day's spinal taps -- (in fact, this was my back the next morning:

) that my father, brilliant man that he is, finally offered me a bucket so I could finally sit down.

"Vomit Bucket," as I came to call it, became the Wilson to my Tom Hanks in "Castaway." I finally collapsed on the couch, bucket in my lap, glad for the sweet release that a short nap brought me.

By Tuesday morning, following a sleepless night, I was dehydrated and in excruciating pain, and begging to back to the emergency room. However, I wouldn't make the trip without Vomit Bucket at my side.

I must have looked awful, because my arrival was like The Price is Right -- once the triage nurse saw me, she was like, "Come on down!" She asked about my pain level, on a scale of one to 10. I whispered, "Eleven."

I couldn't open my eyes.

I couldn't eat.

I couldn't drink.

Let just say it was somewhat unpleasant.

The neurology students stopped by to test me about 20 minutes after I received Dilaudid, a synthetic morphine. They asked me to count backwards from 100, in blocks of seven. My mother, clearly doubtful I could do it even when not drugged, said, "She's heavily medicated, can we wait a little while?"

After tests, tests and more tests, it was determined by my fantastic immunologist that my nurse had run my immunoglobulin infusion too quickly, which was causing severe migraine-like side effects. I was given intravenous anti-nausea medication, as well as the Dilaudid and saline to re-hydrate me.

I was prescribed bed rest and pain killers to take for another week. In addition, my doctor strongly suggested caffeine, which apparently works wonders for people with migraines. This led to interesting conversations in which my parents said things like, "C'mon, just one sip of Mountain Dew!", "I got you 64 ounces of Dunkin Donuts coffee...try to drink it all" and "Hey, Red Bull isn't that vile."

I was too tired to move, but too wired to sleep. So this is what I did for the next five days:

I am so grateful that my fantastic family was there to shepherd me through this awful experience. My mother never left my side, even when there was no chair for her to use at the emergency room. My father listened to me cry, told me it would be ok, and then uncomplainingly took away any box, bucket or bag in which I had thrown up. He was a trooper.

However, there is one acknowledgment I would be remiss to forget, a debt of gratitude so great I will never be able to repay it.

Vomit Bucket, I owe you one!

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.

This is Why I Love New Yorkers: Winter Wonderland Edition

Living in New York City means having access to a rich cultural landscape but a somewhat anemic yard-scape. (Unless your penthouse happens to overlook Central Park.)

So what is a city kid to do when all he can think about is forming three perfectly round circles and topping them off with a carrot nose and a coal mouth? He uses a little elbow grease so he can make this little fellow:

by scooping up every inch of snow in front of his entire apartment building:

Landlords, take note. A New York City toddler will do what your super won't -- clear all the snow from your sidewalk!

"Thanks, Dad."

In a recent post I mentioned that I can often hear my father on his headset after he thinks he has disconnected our phone calls. Well, in the clip below, you can hear me forgetting that my handy little point-and-shoot camera, which takes short video clips, also has sound.

This was from Key West, Florida, a couple years ago, and I find the water absolutely mesmerizing.

I think you'll find the dialogue equally impressive. Or not.

I'm thanking him for bumping into me and ruining my shot. Because I am clearly the Scorsese of low-quality vacation videos, and he blew my one chance to be featured at the next Tribeca Film Festival.

So...thanks, Dad.

Eat, Pray, Shove

This afternoon, a coworker and fellow avid reader handed me a book that she said was “spiritual” and “transformational.” It had changed her outlook on life.

I promised I would give the book a try.

But I was instantly brought back to July 18, 2007. It was around 6 p.m., and I was standing just inside the AT&T store on 43^rd Street and Lexington Avenue. The line was long, and I was thinking that if I stayed I would probably be late to my book club.

I had turned to leave when I heard a loud boom! and saw a couple people outside the store look behind them and start to run. As I’ve mentioned before, my fight-or-flight response is pretty heavy on the flight, so I opened the door, adrenaline already sparking like electricity throughout my body. It wasn’t unfounded. I stepped outside and saw a thick cloud of dark gray smoke. I couldn’t see the Chrysler Building right behind me.

As I ran uptown along Lexington Avenue I heard – and felt – a series of at least a dozen explosions and thought, I’ve always been afraid of dying. I can’t believe today is the day that I’m going to die.

I heard someone scream, “They’re blowing up Grand Central” and someone else yell, “The subways are exploding!” Shockingly (to me, at least), my brain kicked in and I thought, Hmmm, if the subways are exploding, is it a good idea to run along the Lexington Avenue line of the SUBWAY? At 45^th Street I took a quick right and kept jogging until I hit First Avenue.

The decision to get out of harm’s way was an unexpected yet heartening flash of logical thinking for someone prone to panic.

My second flash of brilliance also happened at the corner of 45^th Street and Lexington Avenue. I realized I needed to get rid of dead weight. Since I couldn’t drop 50 pounds on the spot through the miracle of the Hollywood Cookie Diet, the Hollywood Juice Diet or the Hollywood Methamphetamines Diet, I did the second best thing. I looked down at the book in my hand, which I was forcing myself to finish for my book club that night. I knew that my life was worth more than a crummy book – no matter how beloved it was – and as I was fleeing the 2007 Con Edison Midtown New York Explosion, I threw it on a pile of black garbage bags.

I never finished “Eat, Pray, Love,” by Elizabeth Gilbert.

I don’t care how much Oprah loved it. I don’t care that it was optioned for a movie that is being released this August and will probably be a smash hit. I don’t care that I seem to be the only person who hated it. But I really, really did.

I’m sure that Ms. Gilbert really did have a transformational experience. But once she left the bacchanalian portion of her journey, I had to keep suppressing the frequent eye-rolling that her earnest prose seemed to induce in me. I have read and enjoyed truly inspiring books. But this was not one of them.

Without a second thought, I released “Eat, Pray, Love” from my left hand and took off across town.

I eventually hot-footed it up to 59^th Street and First Avenue, where I barged into a pizzeria and demanded napkins to wipe my face. It was July, after all. They hadn’t heard the news yet, so I got some choice looks.

I called my father, hoping he could tell me what was happening. At first, he said nothing was on the news. And then he called back, saying that by all reports a transformer had exploded. I told him that it had seemed worse than that, and much louder. He calmed me down by saying that it had probably sounded like that due to the noise bouncing off buildings.

My mother called and told me that I should take a deep breath, radio reports were saying it wasn’t a big deal, and that I should go to my book club.

Despite shaking, sweating and crying, I walked over to the subway and met my book club at Katz’s Delicatessen on Houston. I spent the first 15 minutes taking deep breaths and telling my friends what had happened.

During dinner, which I wasn’t eating, my mother called.

“Oh my god, are you ok?” she said, sounding a lot more upset than she had earlier.

I asked what was wrong.

The real story had hit CNN and she was finally seeing what I had seen a couple hours earlier. According to Wikipedia (not always the most accurate source, but I promise this is what happened):

The July 18, 2007 New York City steam explosion sent a geyser of hot steam up from beneath a busy intersection, with a 40-story-high shower of mud and flying debris raining down on the crowded streets of Midtown Manhattan in New York City, New York, United States. It was caused by the failure of a Consolidated Edison 24-inch underground steam pipe installed in 1924, at 41st Street and Lexington Avenue, near Grand Central Terminal, just before 6 p.m. local time, near the peak of the evening rush hour. The towering cloud of billowing steam, higher than the nearby 1,047-foot (319 m)-tall Chrysler Building, persisted for at least two hours, leaving a crater about 35 feet (10 m) wide and 15 feet (4 m) deep.

I assured my mother that while I was upset, I was basically fine. I hung up my cell phone and proceeded to discuss “Eat, Pray, Love” (well, minus the last 20 pages I hadn’t read) with my fellow book clubbers.

I already disliked the book prior to July 18, 2007, but now it would forever be linked to one of the most traumatic events in my life.

So, I’ll read my coworker’s “transformational” book. But if I don’t like it, I'm going to ditch it at the corner of 45^th Street and Lexington Avenue.

Dial "A" for Annoying

My father does not know how to use his Bluetooth headset, so after we speak I am constantly treated to his inner thoughts. For instance, I get to hear him sing made-up songs as he drives.I hear him curse at other drivers. And this morning, I heard him pick up lunch at the supermarket, during which time I texted him:

My brother has a propensity for butt-dialing. I arrived at work last week and found a 14-minute voicemail from him, recorded after he came home one night and chatted with my parents. Because I wear a headset and can type pretty quickly, I transcribed my favorite parts and e-mailed it to all three of them so they could enjoy.

And now you can enjoy it, too.

Dad: …even temporarily.

Josh enters.

Josh: What’s that?
Dad: Just an adventure movie, a good one…
Josh: [Burp.]
Dad: …Rock Hudson …
[Unintelligible.]
Dad: What are you doing tomorrow?
Josh: I don’t know, I forget. I think I have plans.
Dad: ‘Cause you’re welcome to watch the game with me.
Josh: That will never happen. In a million years.
Dad: C’mon....
Josh: I hate sports.
Dad: You're a clicky head.
Josh: I'm a nerd.
Dad: This movie is wonderful, by the way.
Josh: Remember, I’m a nerd? Hey, if you want to watch the first season of Firefly, let’s do it. I’m down. Let’s do it, right now!

A few minutes later, as conversation continues…

Dad: Blah blah blah, Sam Rockwell in “Moon.”
Josh: Plot spoiler.
Mom: Let’s ruin the movie for Nancy !
Josh: Awesome! But let me butt-dial her again, so when this message cuts off we can ruin the rest of the movie!
Dad: Yay! Let’s do it!

Exeunt, stage left.

[Note: I was paraphrasing that last bit.]

And now I have begun to suspect that Duane Reade is drunk-dialing me. I got an automated call today that said: “Your prescription of [silence] is ready at [silence]” several times, and then cut off in the middle of the sentence.

So beware, you drunk, butt-dialing, techno-incompetents – I have a blog, and I am not afraid to use it!

The Quicker Picker-Upper

If you thought bleach cleaned your counter really well, just imagine what it would do to your baby's bottom!

Oh...bleach shouldn't be used on human skin? Well, what about bleach wipes? Wait, those either? I guess that warning label makes a lot more sense now:

In retrospect, is just seems so obvious!

Gray Matter

I am feeling very restless tonight. It’s 2 a.m., and I just discovered several gray hairs (white, actually) when I was looking into the bathroom mirror. They were nestled at the hair line above my ear, just behind my bangs.

I was at the salon recently, getting a cut from Carlos. I always tell him, “Do whatever you want.” The first time I said this he broke out into a huge grin, and although he always does a fantastic job, I thought, Why is he so happy? What did I just agree to? There was no need to worry about Carlos, of course. But as he was snipping away this time, he paused, then shouted, “Look, you have a gray hair!”

I saw age 30 a couple years ago, but I had yet to see a gray hair. So I yelled, “Pull it! Pull it!” He wouldn’t do it, so I asked him to single it out so I could pull it myself. I think Carlos assumed I was having a fake meltdown, but I still believe a minor anxiety attack was the correct response. When I saw it was snow white, I was both horrified that he was right about its very existence, and relieved that it wasn’t dishwater gray. It also reminded me of my grandmother, Celia, whose snow white hair always looked so pretty, albeit perpetually in need of a slight trim.

I was hoping that Snow White was an anomaly. A single strand that peaked before its time. But after my experience this evening, I know it wasn’t.

Normally, I don’t think this would be hitting me so hard but about half an hour ago I finished “Still Alice,” by Lisa Genova, a novel about a woman’s rapid descent into early-onset Alzheimer’s. It was very moving but deeply depressing, and left me vowing that my next read would involve a Parisian police detective who solves a heist at a candy factory with the help of his friends, a pair of married chocolatiers. Or something similar.

The malaise caused by the book will pass, but something else is weighing on my mind tonight. My birthday is about 4 weeks away. I don’t particularly love birthdays, but this time of year also marks another anniversary – the onset of my immune system disorder, CVID. I will be celebrating by starting home care, which my insurance company just approved. A nurse will visit me every four weeks to administer my intravenous immunoglobulin treatment (IVIG), replacing my monthly trek to the infusion center at my immunologist’s office.

Intellectually, I know this is a great development. Going to the infusion center isn’t fun. I get there at 8:30 a.m. and am hooked up to my pre-meds (a cocktail of Tylenol, Benadryl and a steroid, to prevent reactions) by 9:15 a.m., and start my infusion at 10 a.m. I then spend 3 hours hooked up to the IVIG, during which time I sleep, due to the Benadryl. Afterwards, I trudge out, exhausted from the medication and the amount of liquid being pumped into me, and pour myself into a taxi so I can go home and sleep for the next four hours and gradually regain energy over the next couple of days.

At least if I get it at home I don’t have to leave, don’t have to wait for the nurses to attend to anyone else, and don’t have to worry that I won’t find a cab during the lunch rush.

The home care company called me several times. I have, thus far, spoken to an intake coordinator, a nurse and someone from the pharmacy department. They all asked me a myriad of questions, including my height, weight, medications, fruit intake, freckle-to-skin percentage and linen thread count. They also explained that I should expect an introductory package in a couple weeks, which would include basic supplies. Like an IV pole.

My very own IV pole.

Nothing screams, “Hey, I’m young, I don’t have gray hair and I’m available!” like your own IV pole. In fact, I may add it to my eHarmony profile.

It’s funny, because reading “Still Alice” reminded me that I am actually very lucky. My immune system deficiency isn’t fatal, although it does increase the risk of other illnesses. It will never impair my cognitive function. And by discovering it and receiving treatment, I am sick much less often than I ever was before.

But the last two years has seen my life change in many ways, confronting possibilities I never thought I would be considering at this age. I can’t believe I am old enough to have an IV pole, let alone a home health care worker. I’m a little worried someone will pick me up one day, drive me to a nursing home and park me in front of a television, where I will nap in a wheelchair and only wake up long enough to complain that the television is both too loud and not loud enough.

Unlikely, I know. But frankly, I was kind of hoping that if I had to have a lifelong illness that I would at least get to keep my hair color for a few more years.

Oh well. I guess that’s why they invented Garnier Nutrisse.