Thursday, March 12, 2009
Hurray!
I got an appointment with one of the country's leading mastocytosis physicians. Dr. Castell in Boston. It sucks but there aren't many doctors who seem to really know and treat this disease. I have been trying to wrap my head around it but the second I think I have a handle on it - something new appears on my computer screen.
I know, I know, I need to step away from the googling. I can't help it. I need to understand what is going on. I had a horrible reaction to anchovies the other night (at least I think it was the anchovies). Then I had a horrible reaction to the horrible reaction. My body was actually vibrating. I thought I was crazy but then I posted it on my listserv and I got a bunch of people saying "oh yeah, that happens to me too". Worse part, it's not the first time it's happened either.
I want to see this doctor so I can find out how I can stay healthy. People who have the advanced systemic mastocytosis are so very very sick. I have indolent systemic mastocytosis so my goal in seeing Dr. Castell is to ensure that I remain indolent. Hopefully her answer is better than my doctor's which was.... "some people stay indolent their whole lives with very few flairs while other people go from indolent to advanced. There is no rhyme or reason to it... it just happens".
Bullshit. I don't believe that. There has to be a way for me to stay healthy whether it's eating or avoiding certain foods, taking meds, exercising etc. Whatever it is - if it means I'll stay healthy... I'll do it.
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YAH!!!! I hope Dr. C. can help you. She seems to be helping SM folks south of our border.
ReplyDeleteAnd thanks for your thoughts about Healers.
YAH!!!! I hope Dr. C. can help you. She seems to be helping SM folks south of our border.
ReplyDeleteAnd thanks for your thoughts about Healers.
i reacted to snapper soup once...not sure if it was the added sherry.
ReplyDeleteThis 'vibration' you're talking about...does it feel like your ENTIRE body tingles?
ReplyDeleteI get this sensation about 2 seconds before I blackout and experience all over body weakness...boom! I'm on the floor. Heart racing, involuntary tears spewing forth, massive sense of panic....
My take on this is to stay away from chemicals, esp. in food. Eat the real food whenever possible. Avoid restaurants that don't make their food fresh. I think the chemicals in our environment affect us a lot.
ReplyDeleteExercise daily, even if it is just a little bit, eat really well, read the labels even on your cosmetics, remove your shoes when you come in the house...Those are some of my thoughts on keeping an even balance. :)