CSS in Oregon- by Russ Crawley

My Name is Russ Crawley and I live in Salem, Oregon. I was diagnosed with Churg Strauss Syndrome in December, 2003.

I have always been in the grocery business, working for over 20 years as a produce manager. Then in 2001 I began working with a smaller market as a meat manager. That same year in June my sinuses began acting up so I went to see my regular doctor. He prescribed me an allergy medicine which cost over $400, and did not help my problem. I went back to him once and found out he was retiring. So I started going to a new clinic in Salem, and they started me on Prednisone. My dose was large for the first few times and then it tapered to to a smaller dose. It worked wonders for me. For about two months I was all clear and free. Then the sinus problems came back again and I went through the same treatment two more times. At about this same time I joined Kaiser Permante where a doctor gave me a physical and told me I was in great health.

In December of 2003 I started getting very sick with a bad cough and wanting to sleep all the time. I would sleep at work on breaks, sleep in my car if I had to wait, and sleep after work until bedtime. This feeling got worse and worse. In addition, I would cough and spit up stuff all the time. Eventually there was blood in the sputem I coughed up. I went to a Allergy doctor who said I had rhinitis, which is a bad case of allergies . 
Then one evening I got really bad and could hardly walk. My wife drove me to Kaiser about 4 in the afternoon. When the doctor saw me in a wheelchair he got very concerned. He had many blood tests run, and it seemed like I was waiting for hours for this test, then that test. Finally, the doctor told me I had pneumonia and gave me an antibiotic. I got a bit better but the doctor wanted me to see a kidney doctor in another city. I drove there that evening and the doctor there told me he wanted to admit me in the hospital that evening . It floored me to be going into the hospital. I hadn't been in the hospital since 1954 when I had typhoid fever ... 50 YEARS AGO!!!!!!! ...

In the hospital they did tests for cancer in my bones and my kidneys, and then gave me a shot of steriods, which I presume was prednisone. I was still feeling pretty bad so I didn't ask many questions. The next morning I wanted to get out of there and take off walking or something. Anyway, I began feeling better and better while I was in the hospital, with the exception of my feet which started hurting when I walked. I spent four days in the hospital, and then came home on 100mg of prednisone.

From that point on I felt I was getting better, but my feet were getting worse. My left foot and outer right shin became numb, and I developed drop foot. It was very painful to walk, and it felt as if my feet were round on the bottom. The Rheumatologist put me on azathioprine and my feet started getting better. To this day my feet still hurt and are numb, although they do feel like they are getting better.

Here are some things I blamed for my illness, which might interest you. First I blamed allergies. Next I thought of Nyquil, as I was taking a lot of that. Then it occured to me maybe it was my job, then I blamed the prednisone for my foot problems. I really don't know what caused my illness.

My doctor visits are getting to be less frequent. My meds (prednisone) are being tapered down monthly now, and my blood tests are down to just once a week. I must be getting better - anyway I do feel that I am. I hear some of you say you get nervous on lots of prednisone but if I had my way and it would not hurt me, I'd take 100mg of Prednisone every day. It made me feel like everything was right with the world and food tasted just wonderful. I am up 20 lbs now and have decided that is enough.... today is my first day of my diet.

I'm not much of a writer but anyway that's my story....

Russ Crawley
August 2004

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