Firstly, let me say that I am not a details person. There’s a reason I never did my PhD. I never remember who did what study, when. The details are annoying and irrelevant to me, and they just don’t tick in my mind. There are several lovely folk in the MCAS community who are those people. Marvelous at citing their work, making sure that their source is reliable, the statistics sound, etc. I applaud them, and I read their blogs on a semi-regular basis. You’ll find a few links under ‘Resources’.
That’s not me. I am a ‘systems’ and ‘patterns’ person. I find complex logic problems beyond fun. I’m going to write about all kinds of things that haven’t been proven or tested. Stuff that all Mastie’s learn, eventually… but that researchers haven’t gotten to yet. The stuff that is ‘best guess’, rumour, ridiculous and/or entertaining (because being able to laugh at how completely bonkers this condition is can really help.)
I expect the people who read this site to use their brains, foggy though they may be. This stuff is so new that the scientists working on it are still formulating the questions, let alone finding answers. I can tell you the things I’ve learned from my and others’ experiences, it’ll be up to you to decide if it applies to you. There is one thing about an immune system gone wild- it’s different for everyone. What works for one can make someone else extraordinarily sick. Evaluate for yourself, and any time you make any medical change, run it past your doctor first. If you have MCAS or another serious allergic condition, take it slow. One little change at a time.
I’m a storyteller. I love telling stories, and I often use the same story to highlight different things. For me, stories are a fundamental part of the human existence, narratives and words shape our perceptions, and can re-write history. And oh boy, can people get caught up on definitions, it is often the kernel of confusion between patients and doctors. I’m hoping that my stories are at the least vaguely entertaining, and hopefully illuminating.
taking my skills from live storytelling into writing is quite difficult. I definitely need to work on the humour aspect. I suppose I could lace my writing with emoticons, but I think that interrupts the flow. I’m much funnier in person than on paper (and much funnier in my head than in anyone else’s). If I write something that doesn’t translate well, be gentle. If you wondering it was a joke, or I was being sarcastic, I probably was.
I would like this to be a positive place. I will remove any comments that are rude, discriminatory, aggressive or inappropriate. Personal attacks on me, or any reader will not be tolerated. Remember that a lot of people on this site are very sick (self included). Sometimes that means that we say grumpy things or don’t express ourselves well. I ask my readers to be understanding of others’ situations. None of us have energy to spend on negativity.
That said- lively debate is welcome! Let’s keep it kind, and thoughtful, and remember that we all have twitchy mast cells…I don’t want anything on my site to be causing any degranulation. (To me, or anyone else).
I have a feeling I’ll be adding to this as ‘situations’ arise; but perhaps it’s enough to say that a twist on Kindergarten rules apply… Sticks and stones will give me a nasty bruise, but words can really hurt me.