I am reposting this post because I’ve updated my protocol to include some info from my doctor, David Kaufman. There will be another version once I finish my EDS addendum (although there is some EDS info in this protocol, like cervical spine precautions during intubation and bleeding risks, I wanted to separate the bulk of EDS […]
UPDATED Emergency and Surgery Protocol for MCAS and ME
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End of Year On a High.
I have to memorialise what happened yesterday because I am astounded and grateful and I bitch so much about the healthcare in this country making so many of us go broke, but this was truly amazing. On Monday, December 30th, for the hell of it (and prompted by something my friend, Rachel, posted), I decided to […]
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Need medical detectives to help with my collapses!
I need help from all the smart people here. Any brainstorming and all ideas welcomed. This morning I had to call the paramedics because I had another “collapsing episode.” Severe abdominal pain triggered low blood pressure and a very low heart rate. I was shaking violently and having trouble breathing, the latter seemed to be […]
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ALL ABOUT IVIG
I want to talk about my success with IVIG (intravenous immune globulin) since this is something that I am frequently asked about by other patients. I’m in a very unusual situation where I administer my own IVIG and fluids through peripheral venous lines (not using a port or PICC) at home without a nurse. I feel […]
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Halloween Update Litany
I’m going to try to write something. An update of sorts. Not necessarily because today is exactly nine years since this illness stepped into my body and started controlling the trajectory of my life, but more because it is a quiet Saturday and I can’t call any clinics and I don’t have any medical appointments. […]
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In Amber
A DECADE A decade since I felt well. A decade since my body and health were not on my mind. A decade since my last cold, flu or bronchitis. A decade since my last vaccination. A decade since I enjoyed Halloween, my favourite holiday. A decade since I was in a lake or ocean. A […]
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Damn Your Eyes
A note about my eye exam today: I need to update my blog more often — for myself, more than anyone else. This morning, I had my first eye exam in 7 years and I looked back here to see if I’d said anything about the last time and saw I’d had a reaction to […]
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Bowel Answers Finally
I finally had most of the colon testing done that I needed and I think I will put off or ignore the other proposed GI tests because I have one big anatomical* problem that is at the root of all of my bowel troubles and it needs surgical intervention. *My surgeon always says ‘anatomic,’ but […]
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Uncharted Waters
I’ve reached a new physical low and I don’t have any idea of the best direction to go from here. When it comes to my health, I don’t do well emotionally without a plan of action. I can only rest easy when I have prepared for all eventualities to the best of my ability, whether […]
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On The Road Again!
I haven’t had spare anything (time, energy, bandwidth) in about 20 weeks. Wow, 5 months — for this long, it’s been one event after another. And January through March was a haze of bare-survival after my husband’s knee replacement surgery and the resulting toll on my body. (His body bounced back pretty well, thankfully.) In […]
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