It’s been ten years since I got sick. It’s been one heck of a war, separated into times of high battles, prolonged sieges and relentless small skirmishes. I couldn’t have imaged ten years ago that I’d still be fighting this war. Things have been very, very difficult lately. I realized that I stopped writing because… Read more Ten Year Anniversary
Over and above all MCAS treatments is trigger avoidance. You can take all the meds in the world, but if you don’t avoid setting off those pesky mast cells, you’re not going to get anywhere. So where do you start? Do nothing Well, that sounds easy, doesn’t it? Ha! 🤪 Remember Grade 9 science, where… Read more First step in Trigger Identification: Do nothing.
Physicians are people, falliable, imperfect, emotive people. And yet, they are expected to be perfect, to know everything, to never make an error. How silly! These expectations make physicians worse, not better. The fear of liability permiates, yet anyone who has ever tried to sue a doctor in Canada knows that it’s almost impossible to… Read more When Physicians Don’t have an Answer
It’s official, MCAS is a ‘thing’. No, not according to some medical governing body… according to People Magazine! There was an article in this week’s magazine about a girl with MCAS, which you can read it ://people.com/human-interest/teenage-girl-allergic-to-almost-everything/.Very rare for a pop news magazine, but they did a great job. It’s well written, and nothing jumped… Read more MCAS is real.
Seven Year Itch (Article as submitted, December 2018 to The Mighty http://www.themighty.com) I’ve been itchy for seven years. It’s time to scratch that itch. In November 2011 my life turned upside down. I’ve always had allergies, but what started as sudden severe abdominal pain signaled a new level of allergic reactions. I now know that… Read more The Seven Year Itch
With the buzz created about a new International Mast Cell Disorders organization, and a launch of the first Mast Cell Disorders awareness day last weekend, I thought I’d bring my own particular flavour to it. I’m currently into beading and jewelry, and it was fun to find beads that might work, and to make several others.… Read more Mast Cell Beads
I’ve been in hospital for well over a month now. I am feeling much, much better than I have in a long time. I suspect I may have been fighting this since late winter. I believe the infection started where a nurse had accidentally gone to the side of the port, not into it, twice… Read more A Month In
I’ve decorated all my masks, you’ll find a gallery here. My mask means freedom. I wear it or have it in hand all the time when I’m out in public. I react to most perfumes and fragrances, the smell of many foods, airborne allergens (like pollen, cats, dogs, dust,… Read more Blinged Out Masks!
This is for the young man at JJ Bean today. Thank you for noticing. Thank you for making others notice, thank you for caring. I went to JJ Bean today after picking up my daughter from school (coffee shops are a way of life here, JJ Bean is a local company- and they have access… Read more A Letter to the Man in the Peacoat
Hello fellow Masties! I could use your help with a question that’s been on my mind. As you probably know, MCAS often follows a ‘stair’ shaped progression, marked by a sudden increase in severity followed by some partial improvement with changes in your medications and trigger avoidance. But then you see another sudden increase in… Read more MCAD/MCAS Progression Survey