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Living in a Lupus Bubble

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Living in a Lupus Bubble
By A. G. Moore 1/13/2013

1918 Flu Epidemic, Oakland California
Photo by Edward A. “Doc” Rogers.
From the Joseph R. Knowland Collection, Oakland Library
Public Domain

It’s getting harder to avoid news stories about the flu epidemic in the U.S. But I’m doing my best. For the first time in years, I am facing flu season without being vaccinated. This I have deliberately chosen to do, though the decision was not arrived at lightly.

Last year I dutifully showed up at the doctor’s office and received my shot early in the fall. I was not home five minutes before a reaction hit. The vaccination site grew warm and swelled; my arm followed suit. By evening I was ill. Although my body did not swell (thankfully) as my arm had, my whole system objected strongly to the pharmaceutical intrusion.

My vaccine induced-illness–was it flu? I don’t know.  Anyone who has lupus knows that it’s sometimes hard to sort the symptoms of the flu from a flare.  It is said that the flu vaccine cannot give you the flu–although in the case of Flu-Mist administered to someone with a compromised immune systems, that is not true. (The Lupus Foundation states: Flu-Mist…is not considered safe for people with any immune-compromising disorder, or anyone taking immunosuppressant medications (prednisone or cyclophosphamide, for example). I take it on faith that I didn’t have the flu. My fever was never high and only lasted a day or two. I didn’t have to go to the hospital and my life was not in danger. But this vaccine-instigated episode was the sickest I was all year. It lasted about a month; the cough persisted for longer than that.

So this year, as I weighed my options with flu season looming, I could not bring myself to get another shot. I made the decision to instead live in a self-imposed bubble. This cannot be an absolute state, because I have obligations. But, as much as possible, I have opted for the “barrier” method of disease control.

I don’t go into crowded stores, or any public places, if I can help it. I read somewhere that a sneeze or cough can send virus as far as six feet from the cougher or sneezer. This aerosolized virus can stay suspended in ceiling nooks for up to an hour after expulsion and then descend on unsuspecting victims.

I babysit often, for a beautiful, charming eight-year-old. I love this child and would not willingly miss the opportunity to be with her. But children are notorious breeders of illness. Last night I allowed the child’s mother a well-deserved night out. The eight-year-old was coughing and sneezing; no flu here, but still a viral threat. I carried my bubble with me–OSHA rated N95 respirator/surgical mask (two at one time, for extra protection) and several pairs of surgical gloves. I’m sure I looked like someone out of Contagion. Though my measures may seem excessive to some, I don’t think they are: getting sick, whether with a seasonal upper respiratory infection or the flu, would be a lot more inconvenient.

When I got home last night, I took off my clothes and put them in the laundry. I washed my face and settled in. The last thought I had, as I drifted off to sleep, was of the sweet eight-year-old child, smiling with droopy eyes as I told her a story and eased her into what I hoped would be pleasant dreams.

I don’t know if I’ve made the right decision about getting a flu shot. It’s hard for anyone to know if this was the best path for me to take. I do know that the vaccine is not as effective in people with compromised immune systems or people who have been on immunosuppressive drugs (I take prednisone, on and off, on a regular basis) as it is in the general population. And I do know that there seem to be types of flu floating around this season that are not addressed by the currently administered vaccine.

If I do get the flu, or what I think is the flu, I’m aware that I must go immediately to the doctor and get some kind of antiviral–there are a few recommended by the CDC for this season’s virus strains. I must trust my doctor to pick the most effective medication. Beyond that, I don’t know what I can do.

My risk is calculated. But so is every risk. My bubble is not absolute; there is no absolute protection from anything. I get up every morning confident that I am right about at least that one thing.

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