March 26, 2008 at 3:21 pm (Uncategorized)

“I don’t know what’s wrong with me,” the girl at the coffee shop counter said. “For the past few days, my stomach has really been bothering me.” I watched her hands as she steamed the milk for my latte. How close to the milk—my milk—were they? “Well, maybe you have that Norovirus thing,” her co-worker said. They were talking about the Norwalk virus, a gastrointestinal bug that has been running rampant through our mid-sized community. It causes vomiting, diarrhea, stomach cramps.

Without realizing it, I found myself inching away from the counter, from the sleek-haired girls who were likely chock full of vomit-causing parasites, from the lovely cup of frothy coffee I had ordered. I hadn’t paid yet. I could run out into the cold, clean air. But Jay and Andrew were with me and we were celebrating the fact that I had actually sent off a book proposal loosely based on this blog. I couldn’t just dash off and leave them there. “Crap,” I thought. “We need to develop a signal, a code to bail from a disease-infested environment.” Something along the lines of when I touch the side of my nose and say, “I wonder if the President’s tummy ever gets upset,” that means we are threatened by a gastrointestinal bug. If I scratch my head and say, “I wonder if the cat was coughing up a hairball or if she has a cold,” that means a respiratory infection is lurking nearby. And then, we run.

But, code-less, we ended up staying and enjoying our coffee. I, of course, pulled out one of the eight thousand bottles of hand sanitizer I keep stashed in my pockets, in my purse, in the glove box of the car, and in every room of the house. I poured about half a small bottle on my hands and made Jay and Andrew use the rest. I also pulled out an anti-bacterial wipe and swiped the outside of the cup and the wood counter in front of us. People were staring. Jay and Andrew didn’t bat an eye, because they are used to this protocol. However, I did decide not to mention the “RUN AWAY” code at that moment. They both have hands that are cracked and chapped (Jay’s to the point of bleeding) from so much hand-sanitizing and washing. I let Jay savor his coffee and Andrew the trinket we had purchased for him before I started in on another germ talk.

We live in a world that looks friendly and clean. It is not. Every surface is crawling with drops of flu virus launched from the snot of someone’s sneeze. Or stomach virus left behind from someone who didn’t wash their hands after using the bathroom. Our vegetables are contaminated with fecal matter. Our chicken is laced with salmonella. And every time you touch something, you bring that nastiness onto your hands. Then it’s just a matter of rubbing your eye, brushing your nose, placing your lips on the rim of the coffee cup…and forty-eight hours later you’ll be retching over the toilet, or running a high fever, or coughing up green gunk from your lungs.

If you’re me, you’ll end up in the hospital. I am what the doctors nicely call immuno- compromised. Because the current theory is that sarcoidosis is caused by my body’s own immune system gone awry, the treatment is to ratchet down my immune system. I take lots of prednisone—so much that you might feel compelled to ask me for an acorn from one of my chubby squirrel cheeks—and I get monthly infusions of Remicade. Both of these drugs suppress different aspects of my immune system. The prednisone does something like bind up my white blood cells, while the Remicade works on shutting off my T-cells’ production of tumor necrosis factor (TNF). If I sound like I understand this, I don’t. I have tried plowing through scientific papers on the topic. I only get one out of ten words; that one word usually scares me enough that I wonder if I don’t have the Norwalk virus because I so urgently feel the need to use the bathroom. Cancer. Demyelinating diseases. Leukemia. Severe infections. Death. The take away message from these one-out-of-ten- words and from my chats with my physicians is that: 1) I am much more likely to get an infection than the average person; 2) Any infection I get is much more likely to become serious and turn into either a) pneumonia or b) sepsis; 3) No one can predict the long-term consequences of these drugs I take. I mean, the Remicade infusions are basically rolling out the red carpet for cancer. My body is like a sneaky teenager. “The parents are out. There won’t be any TNF around here for three hours. Bring on the malignancies.”

Since I am sick with chronic sarcoidosis and feel like crap most of the time, I’d prefer not to spend whatever few days of relative good health I do have contracting sepsis or getting acquainted intimately with my toilet. Hence, the hand sanitizer and the wipes and the hand washing. It might seem extreme. I wipe down Andrew’s library books with anti-bacterial, anti-viral wipes. When I steal trashy magazines from doctors’ offices (I have an impressive collection of People considering I don’t subscribe), I swab those pages with wipes and then sanitize my hands before reading. Whenever we return to the house, we wash our hands. It doesn’t matter if we just poured on the hand sanitizer in the car. We roll up our sleeves, make the water nice and hot, pump out the anti-bacterial soap, and, then, only after we have bubbles formed, do we sing “Happy Birthday”—usually to a Pooh character or to someone like Lowly the Worm from the Busytown books. Why “Happy Birthday?” Why sing at all? Or why not “Three Blind Mice?” According to my doctor, the time it takes to sing “Happy Birthday” is exactly the right amount of time needed to zap the microbes.

For the most part, I try to cut down on unnecessary errands that bring me out into the dangerous world. Oddly enough, I typically nix the grocery store, but spend half my life either in doctors’ offices or in back corridors of hospitals getting expensive tests—CT scans, PFTs, MRIs. (The medical establishment seems to think that giving bland procedures like “pulmonary function tests” sporty acronyms like “PFTs” will add a certain glamour to huffing and puffing into a plastic tube. PFT sounds like an attack helicopter or an invasion strategy. It sounds like war.) I know I am overly housebound when the prospect of going grocery shopping feels like an event. “Put on lipstick! Get out the curlers! We’re going to Safeway!”

While I’ll acquiesce to limiting my comings and goings, I won’t have my four-year old live a hermit’s life. We did pull him out of pre-school at the doctor’s insistence. But I make sure the babysitters take him to story-time at the library, to the park, and on play dates. Of course, I always call ahead to see if anyone in the potential play date’s family has coughed, sneezed, blown their nose, or had an upset stomach in the past week. And, of course, I always bellow after Katie or Andrea as they leave with Andrew, “Don’t forget to sanitize your hands and his hands.” “Yes, Rebecca,” they say, in the calm, but tired, voices of those who work for the mentally ill.

I’ll be the first to admit that sometimes I’m a bit extreme. A couple of weeks ago, Jay and Andrew caught the flu, not an unnamed bug but influenza. They had fevers above 103 degrees. They coughed and hacked and ached and were utterly miserable. “If you catch this respiratory flu, you’ll be in the hospital,” my optimistic doctor told me. “Take the Tamiflu and pray.” I stopped short of setting up a small Tamiflu shrine where I could leave burnt offerings for the medication. But I did sleep downstairs in a bed far away from Jay and Andrew’s contagious breath; I refused to let Jay leave his bedroom (once our bedroom, but now claimed by infection). If I entered the sick room, I went through a decontamination routine out of a science fiction movie. I am typically the nurturing type, so I had to reign myself in, remembering the doctor’s warning. So I cooked homemade chicken soup and left it outside Jay’s door. I talked to him on his cell phone from across the hall. I assured Andrew that I loved him desperately, but refused to cuddle with him. Maybe it was the candles and the incense at the Tamiflu shrine, or maybe my strict self-quarantine worked. But Jay and Andrew recovered—psychologically and physically—and I have yet to get the dread influenza.

Sometimes, when I compulsively scrub down anything that has come in contact with the world with an antibacterial wipe or when I pour several ounces of Purell into Andrew’s hand and encourage him to rub it all over his hands not just his palms, and a stranger catches my eye and slightly shakes his head, I wonder if I have crossed some line. Have I moved from being cautious of catching something to having a full-blown obsessive-compulsive disorder? Should I have wiped Andrew’s flu snot away? Should I let him wash his hands for a few seconds and not worry if we sing all of “Happy Birthday?” Should I feel guilty that my four-year old seems to fully comprehend the concept of germs and infection and the fact that Mommy can get really sick from stuff that won’t make him sick?

I am sure some people would say that I have gone overboard. Maybe the surgical masks I keep on hand (compliments of my most disease-conscious friend) are over the top. But then, these people haven’t had to watch their son’s small face crumple into despair and tears to learn that Mommy has to go back to the hospital and spend the night. They haven’t heard the choked sound of his tears when I talk to him on the phone from the hospital. “I want to come sleep there,” he told me when I was last hospitalized for pneumonia. I’d rather feel crazy than have my heart—and his—hurt that much. I want to be in his life, not locked away in a hospital bed or dead from sepsis. If I am making him slightly neurotic, so be it. If it takes me wearing a Hazmat suit, so be it. If it means I never stroll the aisles of the grocery store, so be it. If it means his hands are chapped, so be it. After all, it’s not all bad. He’ll be the hit of every birthday party with all his practice singing. Lowly the Worm and Tigger can vouch for that. He can belt out one hell of a “Happy Birthday” at the bathroom sink.


  1. Alicia said,

    You’re not OCD. Lots of well people take these precautions, and they have nothing like your excuse. If people look at you disapprovingly, well, forget them. Be secure with your actions knowing that you and your family would be the ones to suffer the consequences of germs, not them!

    I take an immuno-modulator, too, and everyone looks at me like I’m a medical freak when I wear my surgical masks on the plane while wiping down the tray table and arm rests. But then again, I didn’t get sick from all their coughing, did I? I also wipe the covers of my library books with anti-bacterial cloths. You’re not alone.

  2. Dani said,

    Milk??????? You need to get a 93 food panel test for delayed hypersensitivities (IgG). Everybody in my extended family who has sarcoidosis cannot tolerate cows milk protein at all.

    Also, please considering trying TCM (traditional chinese medicine). I contracted staph after my hysterectomy and the brain fog moved in as well as many sarc symptoms. According to TCM I have a spleen qi deficiency, liver problems and kidney problems. The Chinese massage is helping to remove the “phlegm” from my body, and the acupuncture has made an incredible difference. The bitter herbs (sophora flavescens – kurarinone) is killing off the damned staph and other nasty bacteria. So now my damp spleen is clearing out the phlegm, and the spleen is starting to do what it is supposed to do – the immune thing!!!!!!!

    Hang in there – the IgG and the TCM have changed my life 🙂 I hope they help you too. Kind regards.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: