Sunday, April 15, 2012

just so i'm not all darkness and squeak

We went to see this artist play the other night. he's really incredibly talented, both as a musician and a painter. i really appreciate singers who manage to have both amazing lyrics and really stirring vocal inflection. stuff like this just makes me want to create.

Saturday, April 14, 2012

update on life in general

So I had my surgery in February and it went off without a hitch. The anesthesia team at UCLA was awesome in terms of getting me the right anesthesiologist (in charge of critical care so he deals with carcinoid patients as well as patients who tend to either be or end up in ICU), my ENT was on top of everything, it was fantastic. the only hitch was that my sinuses were -really- messed up and the surgery that was supposed to take 90min took 4 and half hours. madness. So my doctor was only able to enlargen and clear out ALL my frontal sinuses but not do the septoplasty. I guess they didn't feel comfortable having me under for that long since it was my first surgery since being diagnosed with mastocytosis.

If this were a cosmetic thing I'd be mildly annoyed (though i imagine that as a masto patient i wouldn't even be considering cosmetic surgery in the first place) but I can't breathe out my nose, and since I can't breathe out my nose my sinuses still get all sorts of crap stuck up there once they get inflamed. So i'm going to have to go back for the septoplasty in May. But I have about 1000000000% more confidence now. The anesthesia used was propofol and for 24 hours I had a fentanyl drip and i had no problems at all!

the debridements have been awful since i react strongly to pretty much all the 'caines so they've been done without painkillers. But I am hardcore and can tolerate it ;) Also going through old mailing lists and with the help of other masto friends, neither my husband or i could find anything going back 10+ years of any masto patients dying under anesthesia. So it's a risk, but as long as you make sure that you cover ALL the bases with the doctors and nurses, you end up mitigating at least part of the risk. though now i have a total buddah belly from all the not exercising i was doing plus all the steroids i was on. HOWEVER, since I don't feel like my head is a block of disgusting anymore, I've been exercising again. Nothing too ambitious to start with, but I've been riding a stationary bike 7-9 miles a day, crunches, and some light weights or kettlebell stuff. progress. it's all progress even when it doesn't go as quickly as i'd want it to. i of course want everything fixed yesterday ;)

One thing I've been thinking a lot about lately is the idea of support groups and how they function, especially when we have social networking like websites, email lists, or facebook. i know i touched on this before, but more and more it seems like people are treating the smaller groups like popularity contests or super secret clubhouses which i think is a real shame (though i am sure i am part of the problem at times, this isn't about finger pointing). that said, i have to be 100% transparent and say that I do have my "own" fb group though it's huge and anyone can join as long as they a) don't actively make anyone uncomfortable or b) don't cause drama. of course, this being masto-land there was some overarching drama from a more "official" support group on facebook and as a result i removed a group of individuals from my private group.

honestly it stunk because i like most of them as individuals (hell, one of them was my husband!) but there was just some stuff going on that made myself and many other people rather uncomfortable. is it a permanent thing? i certainly hope not. in general i'd love it if life in masto-land could be drama free, sane, and mature 100% of the time, but that doesn't always happen when you've got a group of people who are suffering a disease that causes pain, fear, anger, cognitive impairment, isolation, all that terrible stuff. (for the record i am not saying i am drama free, sane, or mature all the time either, way less than i'd like to be honestly). so i removed said group of people, stressed to them that it was not at all personal and that i liked quite a few of them, that was i was sorry, and one of them retaliated by removing me from a support group they ran that was specifically for systemic mastocytosis patients.


it sucks because on one hand, i totally get it. it's their group, they should run it the way they want to. on the other hand, the group of people i removed from my little FB group were members of the board of directors for a non profit organization and some decisions made by the non profit were making people uncomfortable. it was to depoliticize my facebook group and let people have a forum where they could vent without having to worry about answering to anyone about it. in addition it removed the risk of putting board members in a position where they'd have a massive conflict of interest since they'd have to choose whether to act as "Jane Doe masto patient" or "Jane Doe board member" which is a choice i wouldn't want to force on anyone. i mean, but it just puts people in a terribly awkward position that also carries a ton of potential cognitive dissonance.

so while i grudgingly get this person's belief of 'well you removed me from your group so i'm going to remove you from mine' i also strongly believe that if you volunteer or run for a public position you have to accept that there might be more scrutiny in what you do or say, and you might get treated differently, in both positive and sometimes negative ways. But you are choosing that position and choosing to invite that level of scrutiny as well. So to turn around and revenge-kick someone from another support group seems incredibly petty and honestly is a poor representation of the board too, if people can turn things into personal vendettas.

if it were a social group it would bother me WAY less, but it's a group specifically for people with the systemic disease, and there are so few of us to begin with, so it's sort of a slap in the face to be removed by a board member, from a disease specific group, solely out of spite. it sucks even more because up until this point i considered that person a masto-friend and would've totally understood if the roles were reversed. cause it's not about who "owns" the group, it's about what the group as a whole wanted or needed. in my case, a lot of people wanted a group that didn't have a board presence. in their case, they decided to respond out of spite instead of looking at the bigger picture. though in the same regard, it honestly does make me realize how much more we should respect the board as individuals since they all have to personally put up with more nonsense than the average masto patient, even if they might not agree with whatever is going on to cause drama at that moment in time. it's a lot of work and obviously at times it's a lot of thankless work, so i really respect it that for the most part people keep it together and remain objective. i'd like to think it's something i could do, but realistically i'd probably get pissed off after 10 minutes and quit ;) honestly, it does totally suck that board members have to be "on" all the time because they represent a non profit and can't just freak out and bitch like the rest of us.

so to me, that is a problematic element of online support groups, especially ones where it's a super rare disease. what happens if you really dislike someone or they really dislike you when you have such a small pool of people to lean on in the first place? how do you avoid it or work around it? i guess to me the easiest and least disruptive way would be to straight up block them or something. like, i get it if someone has a group of "this is me and my 5 other friends who just want to bitch about life, love, masto, movies, whatever" that they would want to keep it small and/or intimate. but i don't think you can really apply those rules if the group in question is specifically designed for people who have a specific sub-category of the can't, or shouldn't, cherry-pick the people you are willing to support. if there were other ISM groups out there, i'd feel differently, but this was the only one.

So that was really frustrating to see things devolve into some sort of "well you have your clubhouse and i have mine" mentality, but it does really make me think about what the purpose of these groups is and how they function (or i guess dysfunction sometimes). how often is it medical support? how often is it social support? is it primarily some amalgamation of the two? how much do we want to rely on the internet for support, how much do we want to rely on veritable strangers for support, how much do we prefer to lean on other masto patients etc etc etc.

i think in general, since surgery, since all this nonsense, i've sort of been avoiding the internet a little more, which is honestly pretty sweet. the other night i went to a concert and i didn't even bring my phone with me (which, ok, was an accident) but it felt really awesome to be really present and in the moment vs messing around on facebook or words with friends or whatever. maybe i'll try to make this the internetless summer and just focus on exercising and knitting. and juicing! i should write about raw food and juicing but i'll save that for next time since this is already kind of an overly long post.