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.