I always knew my mom was one in a million... but she's also 1 in 30,000... 1 in 30,000 people to be diagnosed with a disease which is known to most doctors as the answer to trick questions on their medical school exams (no kidding!): Wegener's Granulomatosis.
She's been hospitalized since Tuesday and will stay there until confirmatory blood tests are run on Monday (apparently the blood test is so rare/complex, only one lab in Oklahoma does it, once a week).
I talked to her yesterday and knew she was feeling better when she started listing the types of flowers in the arrangement I sent her. (imagine: [labored breathing] "Your flowers are beautiful honey ..." "I'm glad you like them, mom, are you feeling better?" "... lillies ... irises ... [labored breathing] ... delphinium ... canterbury bells ... [labored breathing] ... some sunflowers ... and ... and some red things I can't see because ..." "because it's on the shelf?" "yeah, I can't see it. Oh and a pink rose.") (Those of you who know, know that in her emails my mom only tells me about her garden and what birds she saw that week.)
Anyway, she said she doesn't mind being at the hospital because people bring her food, she doesn't have to do dishes, and she gets to watch cartoons all day. And more people have come by to talk with her in the past two days than she's seen in the whole month.
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My name is Becky and I have Wegeners Granulomatosis. I was diagnosed Nov. 2001. I am now is remission although I still have to take maintenance meds. Need any additional information let me know and I can tell you where to get it. My prayers are with your mom. Beckyu
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