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.

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!

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.

We Are Not Alone

I have a new roommate. His name is Mickey. I've had worse roommates, but I've also had better. Mickey is happiest when I'm not home. When I am, he keeps to himself, only going from room to room when he thinks I'm not paying attention. He also has an annoying habit of pooping on the floor.

Mickey is the mouse I acquired during my neighbor's recent renovations. All New York buildings have creepy, crawly critters lurking behind their aging walls, and my pre-war space is no different. These four-legged foes seek warmth, sustenance and quiet surroundings. So when the pounding of walls and screeching of power tools started last week, they thought, Hmmm, where can we go? This is when they all scurried right into my pleasant little apartment. I caught two right away, after which I called the landlord, who sent the exterminator to plug up every hole we could locate. He used foam that expands and hardens to fill gaps, glue traps and blocks of poison strategically placed in out-of-the-way spots.

But Mickey...he was smart. He was already inside, and he had no intention of being caught.

I saw him fly across the floor a couple times, weaving his way around the long line of glue traps I had added over the course of the week. From the amount of traps, it looked like I was living in a crack den with an extensive infestation, rather than targeting one evil rodent.

The entrance to my living room, also known as "Glue Trap Alley"

Mickey began taunting me. He left droppings directly on the glue traps and still managed to walk free, which should have been impossible. I accidentally flipped a couple of those bad boys glue-side down on my hardwood floors, and let me tell you -- it was a nightmare, trying to remove the residue. And here was Mickey, using them as a bathroom and casually going about his business.

(Dear PETA, please do not complain about my use of "inhumane" glue traps. I tried other contraptions that don't harm the mice -- but they also didn't catch the mice. I respect animals, but I reserve the right to defend my home from unlawful intruders. Also, I enjoy foie gras, wear fur and eat veal.)

I went away for the weekend, and upon my departure I suspect Mickey said, "Finally, she's gone! I get the place all to myself!"

In his excitement, he got sloppy.

I walked into my bathroom last night and saw what I thought was dust behind the toilet. I looked closer and noticed it was green dust. In the middle was the bar of poison, a quarter of which was eaten. Like the evil queen from Sleeping Beauty, I laughed gloriously, thrilled that Mickey had taken my bait.

Sleep tight, sweet Mickey...

Bed Bugged.

Two apartments and seven years ago, I was doing what most New Yorkers in their mid-twenties were doing – finding a new place to live after being kicked out by my insane current roommate.

She decided to move her boyfriend in and me out. But after only two months, I couldn't afford to leave. I asked if I could send the rent in two weeks so I could pay to move as quickly as she requested. And that's when she started screaming, saying she would call the cops if I didn't pay and leave immediately. So much fun. (On a side note, she was pretty and had a son who was staying with her parents in her native country in Eastern Europe. When I asked what she did for a living, she didn't want to say, but later vaguely referred to a job in "finance." To this day, I suspect she was a dancer or an escort.)

Thanks to the miracle of Craigslist, I found a new roommate pretty quickly, and moved into a miniscule room in a fairly nice Hell's Kitchen, sorry, "Clinton," apartment. If I bought a full or queen-sized bed (which was my preference), the entire room would have been bed, bed and more bed. So I compromised, bought a twin, and shoved a couple small pieces of furniture in there.

Two months later, Laura decided she wanted to move. She held the lease, and they were looking to jack up the rent, so I was once again out on my ear. I was furious she had taken me in, knowing she would be leaving so soon. I was also crushed and emotionally wrecked about moving for a third time in one year.

I called my best friend, K, and wailed, "She" sob, wheeze, sniffle, "toooooooooold me," sob, sob, hyperventilate, "to MOOOOOOOOOOOOOOOVE," sniffle, sob, drop the phone, pick it up and start deep breathing. Because K has the Nancy Rosetta Stone, she understood and started to cheer me up and calm me down.

This is when I decided I was done with roommates. I felt like I had checked off a list of things I needed to accomplish. I had lived with a roommate's parrot, waking up each morning to violent screeching at 6 a.m. I had cleaned up the dirty dishes a roommate had left on my bed. I had been tormented by my roommate's mother constantly screaming about her daughter’s good-for-nothing ex-husband and unruly children. I had even been directed not to speak to the private detective following my roommate's married lover.

This is how I found myself paying way too much – and loving it – so I could traipse around naked in my Upper West Side apartment any time I wanted, sleep in, cook at midnight, and decorate any which way I wanted. I was in a studio apartment, so while it was bigger than the prison cells I was previously housed in, I now had to fit an entire apartment of furniture into one long room. Which meant I was stuck with the damned twin bed.

Three years and two rent increases later, I was looking at an empty bank account and a quickly gentrifying neighborhood. Next door, a sign went up over new construction that read, "Coming soon – 2 to 5-bedroom Condos!" However, what I read was, "Dear Nancy, it's time for you to move. You can't afford it here anymore!"

I can take a hint, so I started looking. Washington Heights, the Lower East Side, the Upper [Upper] East Side. My mother kept recommending Astoria. And I kept telling her, "Forget it! Queens is where old people go to die."

In a moment of desperation, I considered having a roommate. She and I went out to Astoria, where she showed me the neighborhood and explained that, 1) she didn't believe in air conditioning, and 2) she had an algorithm to determine television volume, based on a variety of factors: time of day, number of people at home, and if she was taking her meds (that last one was unspoken).

Needless to say, we parted ways – but I was hooked on Astoria.

So here I am, three years later, loving my family-friendly neighborhood and my one-bedroom apartment. Yet I never replaced that effing twin bed. Yes, my living room couch pulls out into a Queen-sized bed, but it’s lumpy and awful. And not particularly practical.

On Friday, mother called and said, “Sleepy’s is having a sale.” With her bartering skills (by telephone, no less!) we used her senior citizen discount to take $200 off a fantastic mattress set.

It was delivered on Saturday, and I couldn’t stop grinning. Here we are (“we” meaning me and Sleeping Beauty, my new mattress):

I keep smiling every time I walk into my bedroom. No more pushing pillows onto the floor when it’s time to go to sleep. No more feeling like I’m laying in a coffin.

Here she is on Sunday morning, after the first test run:

I’m in love. What a beauty!

Blame it on the Rain

It was a dark and stormy night. (I’ve always wanted to write that!)

The roaring thunder and the eye-squintingly bright lightning tore through my apartment at 2:30 a.m. and lasted about 45 minutes.

I woke up this morning completely exhausted, took a shower while still half-asleep, and then managed to blow a fuse while drying my hair. I was only partway to an exquisite 'do but decided the lack of light was more urgent. So I peeked into my bedroom to confirm the power was off there too (it was) and made my way into the kitchen, where the fuse box is mounted about 7 feet off the ground. I used a spatula to open it and flip the bottom switch back to the “on” position. Voila! Power was restored. I'm like Bob Vila, but with kitchen utensils.

I returned to the bedroom so I could get dressed. I then reached for my glasses...which were no longer on my night stand, where I had placed them before going to sleep last night.

Forty-five long minutes passed, during which I did the following in order to locate my much-needed glasses:

1. Pushed night stand away from wall, looked in all drawers, then lifted it up and looked underneath.

2. Moved bed to center of room, tore off all linens, including pillowcases, put lost socks back into laundry basket, decided it was time to sweep behind my bed.

3. Ransacked my newly-folded (now unfolded) clothes.

4. Looked in my laundry basket. Left giant, heaping pile of linens and assorted clothing on floor.

5. Examined my closet, faux-armoire, hallway, living room, kitchen and front hallway.

6. Approached highest levels of desperation, began peeking in toilet, medicine cabinet, refrigerator, underneath my jewelry box and inside my air conditioner.

At this point, I was supposed to be at work in 5 minutes. I was half-dressed, completely confused, and entirely certain that a cockroach had wandered in during the night and decided my prescription would be perfect for his elderly cockroach father.

I also was starting to feel like my apartment was getting unbearably stuffy and humid. A bead of sweat proceeded to roll down my forehead and land...on a lens. On my face.

On the glasses which I had apparently been wearing THE ENTIRE TIME.

You know what? I still have no idea when I put them on, since I definitely wasn’t wearing them in the shower. On the way to work (clocking in a whopping 30 minutes late), I periodically touched my face, still unable to believe that I was in possession of my glasses.

Clearly, both my brain and the fuse shut off simultaneously. And I’m starting to think I will never know what truly happened during those lost minutes.

Hey, have you seen my watch?

Never mind.

What a Drip

Soon after getting my iPhone, one of the first apps I downloaded was a white noise program. Among the 30-odd sounds engineered to lull you into a calmer state of being (including, and I'm completely serious, "Cat Purring" and "Hair Dryer Blowing"), my top five are:

1. Running Water
2. Heavy Rain
3. Beach Waves
4. Stream Water Flowing
5. Running Shower

Sense a trend?

So, the other night I was watching television when I heard “…drip…drip…drip,” which I first identified as a leaky faucet. Not an alarming situation. However, that mild drip turned into the sound of someone pouring a glass of water, and then into a quickly-filling bathtub. Ever on alert, I sprung into action.

I ran to check out what was going on and was startled to see my bathroom ceiling had turned into my own private Niagara Falls. Not so soothing. I started to gather my hand towels, robe and bath mat before realizing that they were already drenched and beyond salvation. (This was not the time for a “Leave No Towel Behind” policy.)

I was at the front door, about to run down to my super’s apartment, when I made a quick K-turn and headed back to my bedroom. It was almost 11 p.m. and I was in pajamas, foot loose and brassiere-free. But even in a plumbing emergency, I don’t take the girls out on the town without buckling them in – you know the saying, “Click it or ticket.” Well, let’s just say I’m a safe driver.

After that quick detour I hightailed it to the basement, where I found my super’s family gazing up at their ceiling. My super lives right below me, so the water had begun to make its way down. I quickly explained what was happening, and the super’s brother (who was filling in while the super was on vacation) followed me upstairs, along with his two sons. It didn’t take long for them to grasp the problem. The super’s brother ran to find the source of the water – a burst pipe, he thought – while the kids helped me assemble garbage cans to catch what water we could.

During the next few minutes, kids, teens and adults roamed in and out of my apartment. While the super’s brother was off exploring, his daughter kept me company. (She came up after the newly-installed basement ceiling hit her when it crumbled due to water damage.) We commiserated until her father returned.

Was it a burst pipe?

No, he said, it’s your upstairs neighbors. They wouldn’t let me in until I yelled that they had a burst pipe that I needed to fix. I opened the bathroom door and found five inches of water around the tub. They forgot they were running the bath.

Fantastic!

Well, I was relieved that it wasn’t a burst pipe, but I was still vowing to give my upstairs neighbors the stink eye every time we passed in the hallway. (More difficult than it sounds – I’ve never seen them, and they don’t seem to open their front door.)

Thirty minutes later I was minus most of the water, after the super’s brother vacuumed it up, the paint was buckling on my plaster walls, and an ominous drip continued to torture me. I was also down two ceiling fixtures. They were filled to the rim with lovely brown water and had started slowly detaching due to the added weight. Here's the one in the hallway abutting my bathroom:

Isn’t that beautiful?

That night I eventually fell asleep to the dulcet sounds of “Frogs at Night.”

I Have Piles

Not those piles! I would hardly announce that I had hemorrhoids on my blog. If I ever feel that comfortable, I’m hoping people would leave a few “Ewww! Gross! TMI!” comments to shake me back into reality.

And the reality is that I have these piles:

Exhibit A – books and more books (and even more books) that seem to multiply no matter how many times I clear out my bedroom bookcase.

If you look very closely, you’ll see that I have Flaubert’s Madame Bovary, because I really am that literate and erudite. Lest I start feeling too intellectual, you are free to point out that it is wedged in there next to Dan Brown’s Angels & Demons.

Exhibit B – last summer’s clothing, casually flung over my chair.

In a fit of organizational pique, I recently decided my closet could use more space, especially since half the stuff in there was a little too roomy for me. I took out everything I couldn’t use. I put the clothes aside. I started to research local churches where I could donate them. And then…my schedule got hectic, I failed to call a single church, and I never use that chair, so it became easy to ignore it.

It wasn’t until the jewelry situation – one billion interconnected necklaces snaking over my dresser like vines – that I felt like my bedroom was less a retreat and more an indoor garage sale.

I’ve gone to the Container Store and bought bill organizers, toilet tank caddies and hanging shoe cubbies. But my bedroom remains the great wilderness in my apartment, the last refuge of the dreaded piles.

I finally decided to take the piles by the horns (yes, in my mind they have horns), and do what I do best: make a list!

I come from a family of list-makers. My mother insists on them whenever there’s a chance that her memory may fail. (Which doesn’t happen.) My father started his packing list before I was born, updated it when I joined the family, and has adapted it for every stage of life. Let’s just say it’s a diapers-to-dentures list, very comprehensive. If he knew we would need something while we were on the road, it would be on the list.

In college, I used a detailed list to plan my study schedule just so:

12:00 to 12:30 – Review chapter 1
12:30 to 12:35 – Write chapter summary
12:35 to 12:45 – Answer chapter questions
12:45 to 12:50 – Drink water and take a pee break
12:50 to 2:30 – Draft opening paragraph of essay
2:30 to 3:00 – Review chapter 2
2:30 to 2:35 – Eat a peanut butter sandwich

Obviously, I couldn’t live up to the list. (For some reason, my body didn’t understand that I was only allowed to drink and pee at scheduled intervals.) I just needed to know that in a perfect world, I could accomplish everything – and in handy five-minute increments, no less.

I sat down last night, cracked my knuckles, and typed on my laptop: WHAT I WANT TO DO THIS WEEKEND.

I proceeded to list 13 organizational and cleaning activities I need to do to get my apartment in tip-top shape. I started to realize I wouldn’t get all of them done in one weekend, so I highlighted the text at the top and typed: WHAT I WANT TO DO THIS AND NEXT WEEKEND.

I thought that summed it up, and gave me two whole weekends to do it all, to boot. I paused, reflected, and added nine more things I wanted to tackle, from polishing my jewelry to spot-cleaning my kitchen floor and dusting every stick of wood in my apartment. I was satisfied that I had covered the organizational gamut, and that at the end of the 22 items, my home would look like a clean, well-decorated youth hostel. (It’s too downscale to imagine as a hotel.)

I saved the document, happy with my effort – and looking forward to my impending productivity– and closed out.

A few minutes later, I felt a tiny doubt surfacing. I reopened the document and highlighted the text at the top. I typed:

SPRING CLEANING I EVENTUALLY WANT TO DO

Seriously, what's so bad about some harmless piles? I'll get to them...sooner or later.