Just spent a week in the city getting to see my super doc, Dr. Yacyshyn, and planning the next phase of attack. So unless I'm one of the unlucky ones who doesn't posses the enzyme to metabolize imuran, that will be my new companion for a long time to come. I'm interested in trying out a drug free remission, but we'll take that in baby steps as we do everything else with this goofy disease. Dr. Y isn't into it (the drug free thing) but I'll try and convince her again once things are stabilized and all looks good. Are you reading this Dr. Y?
Also went and saw my ENT and got tubes put in again so my hearing is not perfect but man has it increased exponentially. I have to say that he (my ENT) has totally redeemed himself after the initial experience. He is kind, and gives me the time to explain myself, and is almost a different person (I know he must have been frustrated seeing me every few days after he put in the tubes the first time when things kept deteriorating and nobody had an answer - but it was a yuckier time for me when nobody took me seriously and I was in the worst shape in my life). He is very good now though, we've had a couple of good discussions in the last few visits. I also have to say that Tyra, his assistant is the best medical assistant I have seen in my newly very active doctor visiting life. She is not only nice and kind but also very compassionate and professional and totally on the ball. If everyone in the medical field was like her, people would have a completely different view of going to see the doctor.
Brian's got a week off and the forecast is for rain rain rain... but he managed to sneak off today and get a good ride in - it's broken cloud right now so he's going for a long one before he goes to the GranFondo in Penticton next month. While there I get to see the hairdresser that makes miracles happen out of bad hair, and now I have the worst hair ever - in the history of time, so hopefully he can pull off a miracle. Hopefully he's still working.
Last but not least, the survey results might actually get used for something useful instead of just settling my own curiosity. Dr. C Pagnoux and Dr. E Yacyshyn are putting the results together and will try and get them published in a medical/rheumatology journal. COOL! wait... SUPER COOL!!!
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Super cool, indeed! How's your hair? More importantly, how's the imuran going? Hope to see you soon, Ms. Marta. Keep bloggin' - it's awesome.
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