Originally Posted by
cwetter
Hi my name is Catie. I was diagnosed with Wegeners in May of 2013. I have been sick since sixth grade. It all started with a pseudo tumor in the orbit of my eye. I was put on high doses of steroids and after months went into remission. I was completely fine until my sophomore year of high school. I got the flu and for some reason couldn't shake it. I was exhausted all the time. Months went by and I was still exhausted. I started to get really bad joint pain. Months and months went by and this became my new "normal." I was barely making it through high school. The doctor told me I had Valley Fever, so he gave us the meds but the next day I was completely back to normal. Summer was coming and throughout the whole summer I was my self again. My second day of Junior year I got sick again. All of my symptoms came back. We kept going back to the doctor but he only kept telling me that I was depressed and had an eating disorder. We couldn't get a referral because he had to sign off on it and he was sure I was depressed. We finally went to a doctor my teacher recommended to us and he ran some tests. My kidneys were failing. So I was then diagnosed with kidney disease. I began to accept I was never going to have a "normal" life. I eventually graduated from high school and moved to Rochester for College. After my freshman year of college I got pneumonia. I started coughing up blood and my symptoms started to get worse and worse. They began to suspect I had Wegener's so they did a biopsy on my kidneys. I was hospitalized and given IV pred. I am currently doing chemo and high high doses of steroids. I had to move back home to Arizona because the chemo started to get so bad. I still have a hard time accepting I am sick. I am nineteen and I feel so old. I am worried about the treatment I am getting because I know cytoxan can affect you fertility. I love kids, I am a nanny and am studying to become a teacher. Being sick isn't easy and nobody understands unless you are going through it yourself. Someday I feel positive and others I want to shut down. I hope one day I was have a "normal" life and be able to live my age.
Well written and nice intro. Sorry you need to be here but this is the best resource to help you deal with your feelings besides a personal therapist which many of us found very helpful. It is hard to get your mind around and adjust to all the changes in your life that Wegs create for most of us. But like a fellow Weggie told me when I was diagnosed and feeling down: "If you survive the treatment, things do tend to get better!"
Knowledge is power! Wisdom is using it to make good decisions!
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