Monday, January 16, 2012


so my blog made it onto google alerts last night. that was sort of unexpected. hello new people!

there is not too much going on here. i'm sort of in this annoying limbo of waiting for my sinus surgery to happen. it was supposed to be 1/11 but a lot of things happened that sort of waylaid it, mostly my body continuing to be a saboteur. so now it's scheduled for the end of february since there is a lot of coordination going into this.

when i first got diagnosed, i was hugely spoiled by the fact that i lived in boston and had immediate access to a host of doctors who all but specialized in mast cell stuff. out here in LA it's a totally different story. where my last masto doctor had around a hundred or more patients, my current one has 8.

but UCLA is really stepping up to the challenge. they've briefed all the nurses and will rebrief the, the head of critical care anesthesia is going to be my anesthesiologist, they're admitting me post-op for observation, they've spoken to pretty much every masto doctor we've thrown at them and read all the literature that's available on the TMS site. so really i have to just give up that control and know that they know what they're doing and i have to trust. that's scary.

one thing i will say, is that from now on i'm carrying purell in my bag forever. i was in great shape leading up to October, no problems, i'd actually had a sinus xray done in May (i'd been having headaches) and then i went home to boston for a wedding. now, flying itself isn't good for your sinuses, all the pressure changes and recycled air, but that isn't what did me in. i went to a wedding and over the course of the night hugged and chatted with 4 people, all of whom after giving me a big long awesome welcoming hug said something along the lines of, "oh my god, i am so sick, i have had the worst sinus infection going on". i try not to make a huge deal out of my masto in social situations. i don't diminish it, when i invite people over i ask they not wear perfume, when i go to dinner parties or wedding i eat beforehand or bring my own food, but i've never really pondered the implications of biological warfare going on between myself and my friends when it comes to germs. I think the combination of 4 flights in quick succession plus 4 germ encrusted hugs just pushed me over the line because the next time i went to the doctor, and had an xray done, ALL of my frontal sinuses were fused shut. the only ones that are normal are the maxillary ones. so from now on i'm going to need to be pushier about asking people if they are sick before hugging them. and carrying purell everywhere.

it stinks because we threw everything possible at this infection too. antibiotics, steroids, nasal steroids, neti pots, steam, nasalcrom, afrin, singulair but it is not budging. so in a couple weeks i'll have my sinuses excavated and can hopefully get back to enjoying life vs feeling like a miserable blob.


Gypsy Princessa said...

Seriously hope you get some relief SOON!!!! Please let us know how the surgery goes.

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