Riding The Roller Coaster - by Ann Mazzullo, Febuary 2006

It all started with a persistent cough in the late spring of 2003. I had always been healthy and active; worked every day, sometimes taught aerobics in the evenings, exercised, and ate fairly well. I was a night owl who loved socializing with friends on weekends. I never saw the doctor except for regular check-ups once a year.

But this cough! Where did it come from? Why wouldn’t it go away? I coughed through the end of May and all of June, and then began hearing a wheezing noise in my chest and throat, before I finally broke down and went to the doctor. My primary care physician diagnosed a sinus infection and prescribed antibiotics and Singulair. Four courses of different antibiotics later, she sent me to an allergist. He prescribed Advair in addition, and sent me to an ENT. Numerous CAT scans and lots of prescriptions afterwards, I underwent my first sinus surgery in September of 2003.

For three weeks, I felt like a million bucks! My husband and I spent a week in Hilton Head, riding bicycles for miles every day, celebrating my return to health. Then BOOM! I was back where I had started. I wheezed, I coughed all day, I stayed up all night coughing. I couldn’t sleep more than 20 minutes at a stretch. I became exhausted and shaky. I didn’t have the energy to do anything but go to work, and then come home and go to bed. I spent entire weekends in bed. What was wrong with me?

In January of 2004, I underwent my second sinus surgery. During my recovery, I was prescribed steroids, which I took for a couple of weeks. I felt better immediately, but I was afraid to be too optimistic. And for good reason! By March of 2004, I was really frightened. I couldn’t breathe through my nose at all. I coughed constantly. I was gasping for breath, and couldn’t walk more than ten feet without stopping to rest. I was sleeping not at all. I was breaking out in a very weird looking rash. And no one seemed to know what was wrong with me! My ENT referred me to a pulmonologist. He took x-rays, diagnosed pneumonia, and treated me with antibiotics and steroids. Within two weeks, I was better. Two weeks after that, I was back where I started. And that was the breakthrough. My ENT and pulmonologist put their heads together. What would cause this kind of sinus problems, persistent asthma, pulmonary infiltrates, lesions? They went back over my bloodwork: eosinophilia. Could it be Churg Strauss Syndrome? Neither had ever seen a case.

In April, my pulmonologist began to treat me with prednisone, and referred me to a rheumatologist. The rheumatologist sent me to Johns Hopkins for confirmation of the diagnosis. And the right treatment finally began. Every day since diagnosis, whether I am feeling good or not-so-good, has been better than the days before. Prednisone, which is hateful, is a necessary part of my life. I have been up as high as 60 mg. a day and down as low as 5-1/2, and am currently at 10. It’s a seesaw, up and down, depending on whether I feel well or whether I have a “flare.” I have also taken Imuran (azathioprine), which affected my liver badly, and am now taking CellCept as a steroid sparer. I take Boniva to keep my bones strong and counter the effects of prednisone. I want to be off of prednisone, like everybody does, but I know it’s keeping me healthy and allowing me to live a pretty normal life. I can work, and I have enough energy left to play. I faithfully do yoga and Pilates every morning, and try to walk a little every day. I feel joy in my life again.

My advice, after all of this: Listen to your body. Be easy on yourself. Rest when you need to. Play when you can. Don’t be too disappointed when you have to increase your prednisone; it’s going to happen over and over again, and decreasing is a very slow trip. And listen to the people in the CSS support group! Sharing our common experiences makes us stronger and much more knowledgeable. Life is like a rollercoaster, full of ups and downs. Enjoy the ride.

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