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.

Sunday, January 15, 2012

it has been a long time since i had posted, sheesh. i think when posts are low traffic that's generally a good thing, as there's nothing interesting to report. for a good stretch of times things were pretty decent, though i've been waylaid by a serious sinus infection since the beginning of october. pretty much all my sinuses are blocked. i was supposed to have surgery on the 11th to open them up, but honestly my life has been SO FUCKING FULL of insanity that i just broke down emotionally and physically. since the surgery isn't super emergency stuff, we're doing it on 2/27 now. the combination of angry mast cells and congestion made it seem too risky. suffice it to say i'm still not psyched about surgery but hopefully there will be more clarity in other aspects of my life by then, so things will seem more settled.

a close family member has been going through the diagnostic process to determine if they have multiple myeloma or some other blood cancer. that has been by far the hardest thing i've had to deal with, pretty much ever. it's so much hurry up and wait stuff that it becomes unbearable. i also haven't really spoken about it with anyone because while i tend to be a fairly open book, i also would like to respect my family since they're more stoic. suffice it to say, right now it sucks. a bunch of blood and urine work was done, and from there i guess it will be determined when said family member needs to get a bmb, which should be this week. it's been incredibly traumatic and i just want answers. which just makes me feel so ineffectual and small because even with answers it isn't like -i- can do anything.

then there was this massive facebook drama. i kind of hate facebook because people can use it to present themselves in whatever manner they choose. since i don't particularly dig my masto diagnosis and don't use it as an avenue to make friends with people, i think in some ways that makes me less popular in the masto online world. (obviously my attitude also makes me less popular since i admittedly can come across as a bitch at times, though that is something i've been working on) but things went ten thousand shades of fucked up over the past 3 weeks. like, there is honestly no way to really be able to elaborate on the nonsense that has gone on without either making up random pseudonyms of people or just flat out calling them on their shit (or my interpretation of it which is admittedly biased and as far as impressions go, not fully formed since i only know fragments of what has been going on)

but this is why i hate facebook, or i guess high school. during the drama of the past 3 weeks, one thing came up that's essentially been verified by two people that, to me, is bullshit. we all have our cliques, sometimes it feels great to scream into a wind tunnel without opposition, however other times i think it can turn into a breeding ground where negative behaviors fester and explode and this is one of those cases. i have no doubt this one splinter group started with good intentions, keep things small, keep things intimate, i get that, i get all of it. it's honestly not something that appeals to me, only because i already know too many people between djing, hooping, jewelry making, gaming, and having lived in a bunch of cities, and i've been blessed with incredibly supportive non masto friends and family. so i admittedly don't rely on other masto patients for much emotional support or even much in the ways of socialization. it's nothing against anyone, it's just that in many cases, aside from this stupid disease we have nothing in common and sometimes those things are huge (religion, politics, etc)

so apparently there is this one clique, and so i've been told, it has a tendency to shit talk other masto patients behind their backs. this is so not awesome on so many levels. first off, if you create a closed community where pack mentality ends up taking over, you're all gonna just discount people permanently and possibly without merit. it's way easy to hate on someone if your 13 other friends do it too, even if half don't even remember why they're doing it in the first place. discounting and discrediting people is so easy when you have a dynamic like that. then as long as you've got this hatetastic feedback loop going, you're never going to look at your targets as people, just sources for amusement. they stop being people and start being caricatures. plus, as long as you've got a group of people backing up your perspective, it's never gonna change.

here's the thing, not everyone needs to be friends. not everyone needs to like each other. to assume either of those things is possible is being blindly optimistic and veering into the territory of being incredibly naive. but when you create a social structure that legitimizes dislike, you're also never going to be able to let go of those negative feelings. really, i can't even see where the benefit in that is. let's say, dear reader, i walked up to you and slapped you for no good reason. obviously it would be fantastic that you had friends you could turn to who would have your back in that instance. but if a year later you're -still- complaining about it, having never confronted me, it grows and grows, turning it into this massive cancer that resides in the back of your head, nothing changing for the better. for me, i don't like to write people off, sometimes to my detriment, but i also think that everyone changes, and everyone deserves a second, third, or fourth chance. people fuck up, but if we viewed everyone based solely on their fuck ups, pretty soon we'd end up hating everyone. there's no joy in that, there's no freedom in that, you end up getting wrapped up in your feelings that should've been let go ages ago.

plus, really, bitching about people behind closed doors, to me, seems stupid. whenever i've had a problem with someone, i'd rather have it out with them right then and there. it's so much more effective than spending time stewing and being consumed with anger or pettiness. i will always have a lot more respect for someone who calls me on my shit directly, even if i don't agree with them, vs someone who bitches about me (or anyone) privately for long stretches of time. i mean, the world is full of unpleasantness, and that includes not getting along with people, but i guess i'd also like to think we could all at least try, especially when it comes to masto patients, as there are so few of us that really the last thing we need is to fracture the small groups we have.