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Human Fly-Paper

Dan shares his experiences in the hospital and how he has to keep himself guarded from situations that most people take for granted

For those of us who suffer from auto-immune disease, there comes a time when we have to make a decision about medication. When the time comes that the non-steroid medications are no longer working, then a choice must be made to venture on to the “harder stuff.” This includes steroids, of course, and also the immuno-suppressant class of drugs. These drugs are especially troublesome, as the list of side effects is not only long, but filled with dangerous possibilities.

It is for this reason that I have been on hiatus for the last month or two. As I related to you in my last article, I was admitted to the hospital due to complications from my R.A. medicine, and what a long, strange trip it’s been.

Walking around like human fly-paper for every bug out there is just another side effect of auto-immune disease that many of us live with every day.

About forty-five days ago, I woke up with a sick and congested feeling. Now, this is not out of the ordinary for me, considering that the major drawback of taking immuno-suppressant medicines is the fact that you can catch any germ that happens to be floating around your environment. While most people’s bodies would brush said germs aside with ease, individuals such as me are doomed to suffer. When the pills you take everyday reduce your immune system to almost nothing, it is inevitable.

So, in order to fight off the cold I contracted, I took a five day dose of antibiotics as I normally do in that situation. The only difference is, this time the medicine did not work. On the fifth day, when I still felt horrible, I knew that something was “more wrong” than usual. Still, as many of us do, I indulged in self-denial, and took a stronger antibiotic. Well, after three days or so of the stronger medicine, things got even worse. At 3am in the morning, my chest hurt so much that I could not take a full breath. So, it was off to the Emergency Room for me.

After a four or five hour escapade getting thoroughly checked out, poked, and prodded, it was determined that I was suffering from a form of Pneumonia. Of course, it was not full-blown Pneumonia, and I did not show most of the common symptoms, but there was definitely fluid in the lungs. What a shock, I thought; I was presenting atypical symptoms for an illness I had contracted -- the story of my life. It was decided that I had better stay at the hospital for a while, so I was admitted.

After a week or so of antibiotics, I was feeling better. The fevers were more or less gone, and I had perked up considerably. The decision was made to discharge me. Now, this is one of the crucial parts of the story, since it shows just how well that both me and my family know my body. When discharged, I asked – no begged -- for a week’s worth of antibiotics to take home. I was told “no.” So off I went, no medication in hand.

After 48 hours or so, guess where I ended up yet again – you got it -- the Emergency Room of the exact same hospital I had just left. Does the fun ever stop, I thought, and also, had I brought my pillow?

So, after sitting in the emergency room hallway on a gurney for about 6 hours, and then spending three days in a holding area, I was assigned a bed. Again. This time around, the fevers were much higher, and I had the added benefit of having extremely low blood pressure. Because of the new symptoms, the doctors who had previously treated me with antibiotics decided to, um, treat me with antibiotics. Again. So, after a week or so, I perked up considerably, and they sent me home.

After two more days, on a Monday morning, at 2am, a high fever began to spike, and I was so weak and dizzy that I could not get out of my recliner. So, this time, in order to change things up a bit, we decided to drive to New York City to admit myself into a hospital there (closer to my Rheumatologist). This proved to be the best decision my family and I made.

After a very close call during that first night, where my blood pressure was hovering around 57/48, I pulled through and was taken to the ICU. Three days of testing revealed the culprit – a serious bug called C. Diff. The best part about this specific germ was that it is mainly contracted from being in a hospital while treated with heavy antibiotics. The fact of the matter is that my compromised immune system allowed me to be infected with a life-threatening bug while I was being cured of another serious bug. Chalk up another two weeks of my life to the city hospital in isolation, and finally I was able to return home and begin life anew.

Now, this is just one of the episodes that having a compromised or non-existent immune system has caused. Over the past several years, there are many other examples of simple infections that turned serious due to the fact that my body had no ability to fight for itself. Living your life wondering if the next toilet seat you sit on is going to put you out of commission for a month is not an easy burden. Even though I always keep a bottle of antibiotics at home, it is no guarantee against a serious problem. Putting life on hold every time a germ comes along is not only disruptive, but downright destructive. How many jobs, no matter how indispensable you may be, will put up with a month absence here and there to fight off what would be a sniffle to someone else? Not many, I can tell you from experience. This is one of the main reasons I write – I can do it from home and make my own hours. It started as a benefit and has now become a necessity.

Walking around like human fly-paper for every bug out there is just another side effect of auto-immune disease that many of us live with every day. Being scared to taste your girl or boy friend’s dish at a restaurant, or passing up a public water fountain even though your mouth is so dry that your tongue and teeth have become one, sounds like a minor annoyance but is actually a downright nuisance – and potentially dangerous to boot. It is just another facet of the wonderful world of auto-immune disease that anyone involved with said diseases has to live with. Just remember, some of the most dangerous words in our language can be: are you gonna eat that?

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