Well, here's my WG journey.... I was diagnosed in April 2005 with WG effecting my trachea, ears, nose, and lungs. Upon reflection I think I started having recognizable flares back in 1998, I just didn't know what it was. But in fall of 04 things started really moving at a rapid pace. It all started with a wicked case of hives all over my body. The only drug the hives responded to were steroids. It took several months to get them under control. At the same time I was ridiculously fatigued. Hardly able to perform my daily tasks. I'd come home from work and not be able to move from exhaustion. Around January 05 I came down with what I thought was a terrible case of strep throat. My nose closed, my throat swelled to the point that I could barely speak. My sisters are nurses, I remember asking them if you could die from strep. I felt like my throat was going to completely close it was an awful feeling. I was told by my doc to go to the ER, he thought I was having an allergic reaction to antibiotics. The ER docs gave me a shot of steroids and my throat opened right up. The next day I went to work feeling pretty good. But that was short lived. Within a week I was down again. Only this time it was getting much worse. My nose was full of scabs and swollen completely shut. I could not breath out of it at all. My ears were clogged with fluid and I could barely hear out of them. My voice was gone, completely gone. I was speaking in a barely audible whisper. I was coughing to the point that I would throw up. Then I started coughing up pee sized clots of blood. I was wheezing and barely able to walk up a flight of stairs. I was in pain all over my body. Now remember this all started in January but I wasn't diagnosed until April. During those months I deteriorated. Finally late March, early April I could no longer work. I was going to my primary doc and the ENT a couple times a week. I had a bathroom full of antibiotics that weren't working. I had every conceivable cold remedy, nothing helped. I thought I was dying, well, I was dying. I was unable to lay in bed. I had to try sleeping sitting upright on the couch. Noone knew what was wrong. finally the doc said go to ER. I went and they treated me as if I were faking. They admitted me for a week and treated me like I was a pain in their butts. They sent me home with nothing, no diagnosis, no meds. A few days later I got much worse. My sisters dragged me back to the hospital. This time the ER doc was good. He knew I was sick. He ordered a CT scan of my lungs. He saw nodules. He said he didn't know what they were, maybe cancer but it didn't look like it. I didn't care. I was so sick. I just wanted to know what it was. I just lay there on the ER cart trying to breathe. They admitted me. A day later they did a bronchoscopy. Aha!!! Their alarms started going off. Finally, a preliminary diagnosis of WG. But nothing concrete. They sent me home after a week, it was a Friday. I was to follow up with the rheumatologist the following Tues. I went to his office Tuesday morning, feeling awful. Still no medications had been ordered to treat the disease. It was still coursing through my body. The rheumy seemed panicked when he saw me. He called the Cleveland Clinic and got me in to see Dr. Carol Langford who quickly became my guardian angel. She saw me that day. She admitted me for a week. She started IV cytoxan and prednisone among some others. Within a few days I started to respond. Once the diagnosis was made I could start to understand what was happening. Up to that poing it was just a terrifying downward spiral. I had always been super healthy and active. Loved hiking etc. Tons of stamina. Then with WG everything changed. I was on cytoxan for 3 months and switched to Imuran, it didn't work so switched to methotrexate. Was on prednisone high doses for a year. Started to taper slowly, very very slowly. It took about 10-11 months to get off of it completley. Now I'm on methotrexate once a week. No pred for now and a fistfull of suppliments. I developed necrosis in both hips due to the steroids. I gained a ton of weight but lost it all with lots of exercise and dieting. I'm limited in what I can do. MY lungs are still scarred from the granulomas. I've got chronic shortness of breath. I can't do high impact activities due to the necrosis. But as long as I'm careful I have no hip pain. And so far, cross your fingers, I've been in chemically induced remission since January 07. To me my remission date is when I got off prednisone.
I'm sorry this is such a long post. I need to do it. Nobody truly gets it. It's still hard for me. I try to be positive but I'm depressed. I miss the way things used to be. I miss drinking wine and my husband's home brews. I miss being able to walk long distances without huffing and puffing. I miss not being able to run home if I get caught in a big unexpected rain storm. I know I'm complaining. I am grateful for a lot. I'm grateful to be alive. I'm grateful for my remission. I really am. But I'm having a hard time reconciling the person I was pre-WG with the person I am now. I'm the same, but so different. So, that's the story. Thanks for listening.
Marcy
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