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!