Tuesday, November 20, 2012

so as i've written, my hometown was wrecked during hurricane sandy. there are still people without power, houses on the south shore are being completely gutted, there is black mold everywhere. it's a bad scene. so i am asking people if you can PLEASE take a moment and just click on this link and vote for my town (lindenhurst ny) to get 10k in charity holiday gifts for the kids. i know it seems small, but it would just mean so much.


Saturday, November 3, 2012

of the utmost importance

Article on Lindenhurst

my town has a website!

So yeah, my the town I grew up in is essentially under water and many people still don't have power, there are 3+ hour waits to get gas, people are breaking into houses under the guise of being members of "utility crews",  a lot of gas stations are inoperable, a lot of banks are refusing to open, ATMs are running out of cash, it is a bad, bad scene... Some areas are under strict curfew with the national guard blocking off streets, other areas are full of looters and vandals. LIPA is a fucking joke with tens of thousands of people still without power, since a lot of boats were destroyed some people have lost their livelihoods, shellfishing has been halted, Add in the fact that it's getting colder, daylight savings time is ending, and there's a nor'easter predicted for Wednesday and it's a pretty bleak picture. And that's just my town, which fared better than Long Beach where the sewage lines and water lines have been damaged and are now mixing resulting in non potable water and sewage coming up through drainage pipes, tubs, etc.

Usually for my birthday I ask people to donate blood or to the TMS, but this year I'm asking if anyone is so inclined, to please donate to the red cross disaster relief NOW (as opposed to January). (for the lazy text RED CROSS to 90999)

Another problem is that tons of houses were destroyed. entire portions were ripped off, roofs severely damaged, cars are on  roofs, boats are in  livingrooms, it's insane. If you are so inclined and have the time, The rebuilding effort is going to be huge

here is a list of ways to help if you're in the tri state area

if you like people more than animals you can donate to the humane society disaster fund

I'll post more ways to help as I learn them

Sunday, June 3, 2012

I may have been going about things wrong

I had a conversation this week about a lot of the drama that had been going on and feelings and stuff. It was super awesome to have a constructive conversation with someone where even though we didn't 100% agree on everything, we respected each others positions and opinions and agreed to disagree while hearing each other out.

This is my feeling on disagreements: Sometimes it seems like in masto-land, if someone disagrees with someone else, we all end up clutching our pearls and asking for smelling salts because we're so shocked or appalled or offended over the whole thing that we tend to lose the plot about whatever it is we're disagreeing about and just focus on the disagreeing and suddenly lines are drawn in the sand and we're all pissed off. I remember this happening once on the TMS FB page where someone who was having a really horrific week posted something along the lines of "i am so $%#$^ tired of this disease" which then resulted in like, 100 comments about whether or not people found the use of symbols to imply profanity to be offensive and everyone sort of lost the plot about the fact that the person who had posted it had been having a horrible week symptom wise and was reaching out for help. instead we all ended up focusing on whether or not to be offended by the implication of profanity or whether or not to defend the use of implied profanity. The conversation essentially went nowhere and the poster ended up more upset because she'd inadvertently stirred up some sort of epic drama-storm that was totally unintended and she ended up feeling really ignored and marginalized in the process. No one was interested in listening to her, they were more interested in being offended by something she had done without malice. This sort of thing happens a lot.
This is an example of how disagreements should not be handled

In the case of the email correspondence, she threw a couple ugly truths at me about how my behavior could be interpreted and I sat on the email for a while before responding so I didn't respond from some super emotional place and just shoot everything she said down in a wall of defensiveness. (this was helped by the fact I was getting IV fluids and couldn't type so i'm not going to pretend it was ALL me being mature on my end) The person I was talking with was also being really awesome about things on their end and not responding to issues -I- had by being all defensive or emotional. It's sort of hard to really describe how to have a constructive conversation without breaking the confidentiality of said conversation, and since this one was private I'm not gonna do that. But it was two people who didn't agree on more than a few issues who were able to walk away from the conversation and say "well while i don't agree with you on some fundamental things, I totally respect where you are coming from and we will agree to disagree" I think that we both let go of our ego or our personal investment in certain actions and just listened to what the other person had to say or how they felt and from there figured out the best course of action. Even though we weren't agreeing with each other we weren't all "shut up shut up this conversation is over and i am going to put my fingers in my ears lalalalalalalalalalayou don't exist"
This is an example of how disagreements should be handled

One thing that she pointed out to me was that what I write here or in other public spaces can be seen as an attack and has made other people feel uncomfortable or could be interpreted as the intent to start a fight. That's never been my intention. One of the reasons that I'm generally super public about issues that I have had with groups or Facebook is because I'd rather be transparent and/or give people an opportunity to tell me that I'm wrong or just call me on my shit vs having a hundred private conversations with a hundred different people about how annoyed I am about whatever it is I'm annoyed about that week. Because for real, what I post here isn't an absolute truth, and I don't really ever see my opinions as being immutable or absolute either. I'm not saying I'm always -good- at it, but I really do try to be introspective and if someone says "i think you did ____ wrong"  even if I end up not agreeing with them in the long run, I can guarantee I'm going to reflect on whatever it was that is being discussed.

So I really do apologize if people have taken things written here as personal attacks. They were never meant to be, this is where I usually express my feelings on stuff, but I'm -so- all about utilizing the comments as an avenue for conversation. Because for real,  I'm really tired of the drama in masto-land. like, really really really tired of it. It just bums me out to see things get more and more fractured over time.  I'm not saying we should all become bffs for life or anything like that, but i really would prefer to agree to disagree. there have totally been times where i've been a combative jerk (or come across as such since i tend to have a rather brusque personality to start off with) and i am sorry for it. i think, for me, as i said earlier, i don't have a problem with someone disagreeing with me and i don't take it personally. but i also can't push my worldview on everyone else or expect them to have the same tolerances or boundaries or whatever either.

So yeah, it's kind of a bummer to realize that my actions, which were intended to be open and transparent instead sort of seemed more like an intent to start a big public fight or something. i just always prefer to avoid the cloak and dagger bullshit of talking about people or groups of people in secret and am more about being straightforward about things...though I can see that it could totally be interpreted as being overly combative or aggressive instead...which again, has -never- been my intent (ok i'm no saint, there have been instances where i've been mean about some stuff but it's been public and obvious. it's also not something i'm super proud of, but i'm not gonna play this out like i'm all perfect and that my actions never fall under the category of how not to handle a disagreement either)

Friday, May 11, 2012

I prefer it when things are uneventful

So I had surgery on Wed for the ever ongoing saga of my nose. This time around it was to straighten my septum, reduce my turbinates, and flush out any remaining crud.

As usual, pre-op was awesome at UCLA. I'm honestly really happy with the hospital in that regard. All the surgeons and fellows and residents and nurses came to talk with me about the masto and my concerns, to take a list of my medications, talk me through the procedure...everything.

I went in to the operating theater, was given my mask full of whatever and out i went.

i woke up about 2 hours later in the post op room which was very loud and bright. i remember people kept pushing fentanyl on me so i would not be in pain. part of me wanted the drugs primarily so i'd be knocked out and not have to listen to people but after a while it started to put me on edge so i requested that they stop administering it to me and prepare to move me to my room (you get private rooms at UCLA - snazzy!) which didn't go over well because the staff was concerned about pain. considering that i have passed kidney stones without painkillers, had sinus debridement without painkillers, broken my toe without painkillers, i know i can handle things without painkillers. however getting the staff to let me out of the intensive post op unit without painkillers was almost so painful that i wanted something to take the edge off ;) one thing that was annoying me was as much meds as they were pushing, i wasn't feeling it at all.

they got me to my room and all of the sudden i felt this intense crushing pain in my chest. i can honestly say i've never felt anything like it. i looked over at my heart monitor and my heart rate was constantly jumping from 65 to 130 and pretty much every number in between. I've never experienced anything like that.

Of course, no one knew what to do. My husband called the chair of the TMS and she went about and instructed the nursing staff and doctors on what h1 and h2 blockers to give me in conjunction with steroids. It's so funny, it was the most obvious answer but at that time it totally alluded me and ethan. this is information we've given people countless times before but when it came down to an emergency situation we were both kind of stupid...

the emergency meds helped considerably. i'm guessing epi would've helped more but i was contented to try to let it sort itself out on its own as i had a host of doctors hanging overhead and if things got crashy, they were prepared for it. i also had like, 5 EKGs and an echocardiogram. I'm going to see the cardio team on Thursday to determine what happened but all the tests and bloodwork came back normal so i'm assuming it was my mast cells. I honestly almost felt like i wasn't metabolizing the fentanyl correctly and that it all hit my system at once. I went from "ok i feel totally normal and i have a headache" to "holy fuck i can see through time" pretty abruptly.

One thing I will give UCLA is that all my doctors kept coming to visit. my surgeons, the anesthesiologist, my allergist, pretty much if they were a doctor at UCLA that i'd seen, they came to visit me. it was absolutely calming which was good since i think this was the worst masto experience i've had to date. so mad props go to the staff at UCLA and Val for getting us on the right path. I was actually really impressed that they were willing to listen to her regarding the emergency protocols...

so yeah now i'm in the healing process. my head is killing me, my nose is painful to the touch, but overall i feel optimistic. i am of course concerned about the cardio stuff, but as long as it's just masto and not something else, it will be okay. 

Wednesday, May 9, 2012


I'm having surgery in a couple hours. again. my nose is such a trainwreck but hopefully this will fix all of it for the last time.

i had a therapist who once told me to tell a lot of people when something scary was happening so that they could offer words of support so that you could focus on the thought that lots of people were thinking kindly of you during said scary event. the events of the last two weeks have honestly made me feel so insecure that i have a hard time asking for that. instead i have this dreadful feeling that people will be all negative or bitchy about it. it's awful.

but here is to making it out on the other side with a functional nose and calm mast cells.
This is so true. A lot of time I feel like the people who tout the strongest convictions also tend to be the most hypocritical. This is about the gay marriage ban in north carolina which is shameful to see as an american, but i feel like it's applicable to a lot of situations.

for most of my life i was raised as a fairly half assed catholic. i went through baptism, communion, confirmation, but my parents always taught me to read everything as objectively as i did roman or greek mythology. that many of the stories should be looked at more as metaphors or fables vs being the straight up truth. then i went to a liberal college in a liberal city and hung out primarily with people who might not always have been politically liberal, but were at the least very socially liberal.

when i got diagnosed with masto and started seeking out support groups i ran into a lot of christianity, moreso than i ever had in my entire life. a lot of people just follow christ's teachings and do it to a degree that should do the church proud. they're pious but accepting of other people regardless of race/religion/sexuality and to me that is awesome, i imagine that that sort of attitude is what christ would want.

i've also run into a lot of people who seem to almost use faith as a weapon, a banner of pride that they are not living up to the expectations of.  it bothers me because i don't find that personality type agreeable but it also bothers me because i don't want to find it disagreeable. the whole live and let live thing is really important to me, and i hate when someone does something i foolishly judge as offensive and i think something like "oh screw them, they're being a dumb neocon" cause when i do that, i'm being a dumb liberal. focusing on our differences is useless.

i think stuff like that is why i dislike and continue to further dislike facebook as a form of a support network. i would love it if the TMS could make some sort of messageboard system on their website where we focused on each other in terms of the disease vs learning about politics or affairs or religious beliefs or favorite bands or racist quips or whatever other random things that come up through facebook which presents itself with a much more social tone vs solely medical or support. Cause really, on facebook I have something like 680 friends and no one needs 680 friends, and while i like meeting other masto folks in real life i'm so very rarely looking for emotional support when i hit up any of the support groups. it's more "hey how to people tolerate this antibiotic" vs wanting to talk on the phone or share innermost thoughts. maybe that makes me a lousy or distant person, i am not entirely sure sometimes. suffice it to say it would not be the first time someone said i was distant.

even still, while i'm not angry about it any more, i'm disappointed that the holistic group was turned into a social group and was essentially taken over by a very cliquish and (in my opinion) negative group of people (not the moderators, who i like but who now, big surprise dislike me due to their new fb friends). i just don't see how anyone can tolerate or accept the rejection of others when they are seeking help for something that such a select few know anything about. i wish there was someone who could just slap all of us (including me) upside the head and set us on the right path of acceptance and inclusiveness instead of all this back biting nonsense that is just continuing and seems to get worse over the years. it's frustrating because i do feel that some people are viewed as troublemakers. the problem with that is, that from whatever vantage point you're at, you're gonna see what you consider to be troublemakers. the thing is, depending on where you're standing, that group becomes populated with different people. there are very few instances where one can say objectively "ok man, that wasn't cool". it's all such a matter of opinion, and i guess (to  me) when it comes to medical support groups for orphan diseases, opinions should be left at the door. cause regardless if i view someone as an uptight neocon or they view me as a filthy hippie, at the end of the day we're dealing with something far far FAR larger than each others perceptions of one and other.

it's stuff like this that is really making me rethink my position on all the support groups. when i first got sick, my doctor (who is one of the top notch masto doctors in the country) flat out told me to avoid support groups as they were negative and rarely helpful and often harmful. at the time i ignored that because i wasn't really aware of how individualized this disease was and i wanted to hear other people's experiences and learn what things to avoid and embrace. 5 years later i've come to realize that it's impossible to glean that information from each other as we're all so different. so why do i stay? is it because i want to help other people? at this point i've just heard that the aforementioned clique of twisted sisters is more than happy to smear my name as well as other peoples, so who am i helping? i'm assuming new people will just be told i'm a jerk or something so they probably don't even want to listen. i certainly don't need the additional conflict, that's just gotten so old at this point it's unbearable.

all griping aside, i have met some really awesome people though. people who look past the differences, past the drama, and just exist....and that's where i want to be. that's where i need to be.

Saturday, May 5, 2012

and then

this morning was full of people trading angry emails and fb messages regarding the whole holistic fiasco. at first i was really angry. i don't like or respect the concept of people rejecting each other when we are dealing with something so much larger than ego. i got myself all bent out of shape about it, and then on my facebook feed i saw a post that MCA from the Beastie Boys had lost his battle with cancer. I skimmed through itunes to find a song by him to play in some sort of memorial and the Bodhisatta Vow seemed the most appropriate. As these things work, it also served a reminder that my own ego was too involved and that my anger was caustic and useless. People are going to do things you don't agree with, and in the end you can let it eat away at you, or you can move on and accept it.  In the end every one of these people are hurting in some way or another and to take out my own anger on the situation doesn't help.

I'm not gonna be all pollyanna and pretend that compassion and kindness is gonna get anywhere with them either. if you choose to close yourself off, that's a pretty clear signal. but that said, this is a good piece of grounding music and wisdom

"Bodhisattva Vow"

As I Develop The Awakening Mind I Praise The Buddha As They Shine
I Bow Before You As I Travel My Path To Join Your Ranks,
I Make My Full Time Task
For The Sake Of All Beings I Seek
The Enlightened Mind That I Know I'll Reap
Respect To Shantideva And All The Others
Who Brought Down The Darma For Sisters And Brothers
I Give Thanks For This World As A Place To Learn
And For This Human Body That I Know I've Earned
And My Deepest Thanks To All Sentient Beings
For Without Them There Would Be No Place To Learn What I'm Seeing
There's Nothing Here That's Not Been Said Before
But I Put It Down Now So I'll Be Sure
To Solidify My Own Views And I'll Be Glad If It Helps
Anyone Else Out Too

If Others Disrespect Me Or Give Me Flack
I'll Stop And Think Before I React
Knowing That They're Going Through Insecure Stages
I'll Take The Opportunity To Exercise Patience
I'll See It As A Chance To Help The Other Person
Nip It In The Bud Before It Can Worsen
A Change For Me To Be Strong And Sure
As I Think On The Buddhas Who Have Come Before
As I Praise And Respect The Good They've Done
Knowing Only Love Can Conquer In Every Situation
We Need Other People In Order To Create
The Circumstances For The Learning That We're Here To Generate
Situations That Bring Up Our Deepest Fears
So We Can Work To Release Them Until They're Cleared
Therefore, It Only Makes Sense
To Thank Our Enemies Despite Their Intent

The Bodhisattva Path Is One Of Power And Strength
A Strength From Within To Go The Length
Seeing Others Are As Important As Myself
I Strive For A Happiness Of Mental Wealth
With The Interconnectedness That We Share As One
Every Action That We Take Affects Everyone
So In Deciding For What A Situation Calls
There Is A Path For The Good For All
I Try To Make My Every Action For That Highest Good
With The Altruistic Wish To Achive Buddhahood
So I Pledge Here Before Everyone Who's Listening
To Try To Make My Every Action For The Good Of All Beings
For The Rest Of My Lifetimes And Even Beyond
I Vow To Do My Best To Do No Harm
And In Times Of Doubt I Can Think On The Dharma
And The Enlightened Ones Who've Graduated Samsara

Friday, May 4, 2012


the masto soap opera continues

sometimes I think Facebook is like, the worst fucking thing to happen to masto patients. in the past couple weeks the drama that has been pervasive all over the site is seriously like watching a community theater version of Game of Thrones. It's fucking ridiculous. Gossip, malingering, all sorts of accusations, threats, blackmail, exclusion of patients, pretty much if it's shady and harmful, it's happened. I know I don't know all the details, and to be honest i don't want to. unless some poses a real and valid threat to other masto patients, something that can be backed up with solid evidence and not conjecture, i don't care. it's not my place to judge.

 I was part of a group that was oriented around Holistic medicine. I'm a firm believer in Holistic treatment. I've found that I've been able to control my disease fairly well through following a low histamine diet, through low/no processed sugar, low/no gluten, coupled with exercise to protect my spine since I have osteoporosis as well as to just condition my body overall. While I am also a huge fan of science-proven medication, as without it i'd be screwed, i do think that we are more than our diagnosis and to treat ourselves the most effectively we have to look at the whole picture. we need to figure out how to change our diets and get rid of the superfluous stuff that might sap our energy to digest, we have to figure out if we can exercise and what the best exercises for us are so we can protect our bodies if we have osteo so we can maybe ward off going on really strong bone drugs for a while, we need to figure out what the best diet is to protect our bodies from the side effects of our medication, the list of reasons why we should all (masto or not) be aiming for a holistic approach to our healthcare is endless.

 So we had this awesome support group of 100+ people, and I guess some shady stuff happened between two members. (there are also accusations of malingering, but at this point i've run into so many attention whores and fakers that i just ignore them because it's not worth the mental or emotional energy to try to "out" them. if they're legitimately faking it, everyone will see through it soon enough and obviously their lives are pretty sad and empty if they need to fake having this awful disease) I don't know them, so what went on between them shouldn't be my business, but their business seemed to become everyone's business and it even eclipsed the potential malingering element.

To be blunt, I really don't care what strangers do with their free time. If I need my dose of voyeurism, i'll go check TMZ or Perez Hilton or read People magazine or something. So two people went and did something that, depending on your moral convictions, ranged from stupid to scandalous to sinful. The moderators alluded that something terrible had happened (though it seemed, at least from my perspective that the majority of us did not care a lick about what they were alluding to) and then suddenly private conversations were made public, personal photos were made public and emailed all over the place, conversations showing people cursing each other out was made public, names were sullied, again it felt like real Game of Thrones style drama (as an aside, Game of Thrones is awesome, masto-facebook drama, not so much) and out of nowhere everyone was kicked and the group was shut down. all the documents we created, gone. i was kindly given some by one of the moderators but i'm not sure if it's all of them. but again, to lose that collaboration, for other people to lose access to those documents, it's painful. it's literally physically and emotionally painful for people. months of posts, months of discussion, just all gone. it's like someone died. the loss is really that deep and that painful for many people involved.

 A couple days later people started getting rejection emails from 10 newly appointed moderators. Apparently quite a few people were getting these rejection letters. I was told that the main moderators had decided to reform the group and appointed ten moderators and decided to cap the group off at 50 members. 10 moderators and 50 members. That's sort of a crazy imbalance to start off with. The other new "rule" was that all new members had to be unanimously be voted on by the ten moderators and if you were rejected you couldn't be told how or why or by who. The replacement to our awesome, inclusive, holistic group is the antithesis of everything it once was. The group that myself, and other people were rejected from is very clearly not the group we thought we were asking to join. i don't like private groups, i think they are breeding grounds for cliquishness, gossip, and groupthink. not my scene at all.

So now it feels like we're now back in grade school and it's all about popularity contests and somehow we can now justify the concept of deciding who is or isn't good or nice or pretty or funny or popular or 'nice' or interesting enough to be a part of a support group. for a super rare disease with no cure in sight. there are so few of us i just don't see how this division can go on and be healthy.

 Look, I get that people want to have small fb groups where they can keep tabs on their friends. it makes sense to have a group of 5-10 people where you all know each others addresses or phone numbers, where you can talk about really intimate life stuff like deep seated emotional feelings or relationship stuff or whatever...but that's more of a personal support group. that is not ever what the holistic group started out as. it was over 100 people, everyone didn't know each other, and it was a beautiful thing save for the drama of a couple people. for the life of me i don't see why those people weren't removed and then just have the group go on as it would've.

i mean, the TMS page sometimes erupts into MASSIVE drama, but it all dies down within hours and everyone goes back to supporting each other. while i know that i've had my share of not so nice thing to say about the TMS from time to time, i totally respect and admire that they try to treat everyone as equals, regardless of their personal feelings. and really, considering how astoundingly dramatic the masto community manages to be, that's no small feat. but what upsets me, is when you set up a support group on either an element of the disease or a treatment modality, you have to give up some of the control of that group, it no longer belongs to one or two people, it belongs to everyone. like, i don't consdier the support group that i started as 'mine'. it's not, it belongs to all the members equally. i cannot think of any reason that ANYONE should ever have for denying someone access to information or support other than like, threats of physical or emotional violence. Otherwise there is simply no justification for it. as it stands, i find it heartbreaking on a real personal level that the moderators  abandoned over 100 people by deleting the group with no warning, without proving the option to pass moderation on to new people. regardless of the pain the moderators were feeling, by starting and maintaining a group of that size, you end up being on some level responsible for them...and you might not like everything that is going on, but there are still 100+ people depending on you to look out for them, even if that means making painful decisions that benefit everyone, not just a select few.

 i understand that they were upset about the drama that was going on, but it seems like it really consisted of two people doing something dumb, a few people running with that gossip, but i just don't see how that's worth making a move that ended up denying over a hundred people an awesome, unique, and irreplaceable support structure. i just don't. maybe i'm being bitchy but i don't like being made to pay for the actions of other people. i don't like seeing other people get thrown under the bus either.

i run my own splinter masto group, something i've mentioned before, and there have been a ton of times where i have wanted to stop moderating it (even though i moderate it in the loosest sense of the word) because i worry about it potentially creating some drama between me or my husband and the TMS board (especially since he is on the TMS board) but i would NEVER just delete the group and walk away from the people who used it for support. the only thing i would do is hand moderation over to someone else and just call it a day. i think it stinks to delete a group that over 100 people relied on for support over the dramatic goings-on of two people and then replace it with yet another super private, super elite group where people literally VOTE on whether or not you are good enough to be in their company. that kind of group doesn't benefit the amount of people the initial one did. it's just another insular society that will remain insular and only help the people it chooses to. i'd understand or respect it more if the masto community was huge, but it's not. there are so few of us and we're lucky enough to find each other for support of education or help and we -need- to do that. we owe it to each other to put ego aside and help each other. we're not going to get anywhere by continuously fragmenting or segmenting an already painfully small group. plus honestly, there are a lot of people who rely solely on FB for support with this disease.

 i am incredibly blessed that my husband, friends, and family have been super supportive since day 1 of my diagnosis. not all people are that lucky, and to have the hubris to decide that you can reject their pleas for support is baffling to me.

again, to be clear, i understand some people want their smaller masto groups where it's them and 10 friends. personally i don't agree with it because i don't like dynamics like that, but different strokes for different folks. but we're literally talking about people abandoning a very large support group without warning and leaving everyone to go screw themselves and replacing it with something that is nothing like the original, barely accessible to many people who relied on the original group. it sucks.

this community is too small and too delicate to keep dealing with these repeated fractures. and really, how the fuck many small secret societies do people even need on facebook to feel validated? why the hell is it that we can't just put aside our differences, recognize that we're not all that similar save for this insidious disease, and do all that we can to reach out and support each other without ego, without bias. no matter how many awesome exclusive groups someone might end up in, at the end of the day we're all still stuck with this fucking awful disease, and the more people we can learn from, reach out to, connect with, the more we benefit. the more ALL of us benefit.  not the other way around. not just a select few.

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 disease...you 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.

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.