Monday, July 16, 2012

I Have a Secret!

The New York Times published an article last week called “Keeping Parkinson’s Disease a Secret,” in which people with that illness struggled with revealing it to family, friends, coworkers and clients.

“Doctors and researchers say it’s not uncommon for people with Parkinson’s to conceal their diagnoses, often for years,” wrote Kate Yandell.  “But the secrecy is not just stressful to maintain; experts fear that it also may be slowing down the research needed to find new treatments.”

I don’t have any experience with Parkinson’s.  But as someone living with a rare illness, I certainly have experience deciding when and how to reveal what I’m going through. 

When I first got life-threateningly sick, it was pretty much a public event. I ran out of my office following a call from a hematologist I had never met, telling me to go to the ER immediately.  I called my supervisor, left a message that I was leaving, and she quickly called back and offered to have the car service bring me to the hospital. It was 4 p.m. on Friday, otherwise known as rush hour. So of course I said no, that I was sure I’d find a taxi. RIGHT. 

This was the first sign I’d gone insane with panic.

This should be my daily uniform.
She met me as I was leaving and followed me downstairs to help me find a taxi.  I eventually negotiated a fare with a gypsy cab, having failed to find a yellow cab while I darted in and out of traffic on Lexington Avenue in midtown Manhattan. All while my supervisor ran after me, making sure I wasn’t about to die on company time. On the way downtown I cried, called my mother and told her that I was worried because I still had work left unfinished.  The cabbie overheard this and told me that work could wait because my health came first.

This is all to say that it’s very difficult to keep some things a secret. Not because I was wailing about it at the top of my lungs (in what was probably an episode of “Cash Cab” or “Taxicab Confessions”).  But because you can’t leave work in such a spectacularly public fashion and expect it to go unnoticed. Particularly when that’s followed by several weeks out of  work, updates  provided to my company during my absence, and caring coworkers who wanted to keep in contact.

However, I could have done what many do and downplayed what was going on. Or made up a cover story. Or flat-out lied. But that’s not in my DNA. I don’t need to share every detail, but if people ask, then I’m likely to give an honest but abbreviated version of the story.  Here’s my theory – people will treat my illness how they see me treat it. So if I am matter-of-fact, drama-free and positive, it puts the onus on them to avoid pity and negativity. 

I really thought I was going to die that Friday. For a brief moment, the doctors thought so too.  But I didn’t.  The fact that it all could have been avoided is one reason that I’m vocal. I ended up in the ER when my platelets crashed, which was because my immune system was crashing.

We didn’t know that for several months afterward, thanks to a crack hematologist. But I had been sick for years, and asking doctors why I got sick so much.  I was simply told that some people were “lucky” like that. Sure, I was just lucky! Not suffering from a primary immune deficiency disease. No sir.
I’m not just honest about my illness because it could save someone else. I’m honest because it would be terribly exhausting to hide it.  It would also be a continuous and losing battle.

“Hey Nancy, you’ve been out a LOT lately!”

“Hey Nancy, how come you’re walking so slowly and coughing like that?”

“Hey Nancy, what’s with all the bruises on your arm?”

These are questions I get from people. You could say they’re out of line. But they like me. They’re curious. And I’d rather they ask than discuss it behind my back or invent reasons.

Because what’s the likelihood they’d actually hit on the right answer, when it took 31 years for medical professionals to figure it out?

I don’t want to turn every conversation into a group of 80 year-olds discussing their bursitis and the pros and cons of hip replacement surgery. And I’d hardly lay this out on the line within 5 minutes of meeting someone. Or reveal anything to a person I didn’t like or trust.  I’m not crazy. (Not entirely crazy, anyway.) But if it comes up naturally, I give whatever details seem appropriate and then move on.

So let’s move on, shall we?

Thursday, July 29, 2010

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?

Wednesday, July 7, 2010

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, "I
t’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.

Monday, June 28, 2010

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!

Monday, June 21, 2010

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!)

Wednesday, June 16, 2010

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."

Thursday, May 27, 2010


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.