Wednesday, September 9, 2015

Signal Boosting for Someone Else

I met Sara my freshman year of college at a party, and through the wonder of the internet we've stayed in contact for the past 19 years even though we've lived very different lives, sometimes in different countries or cities.

A few weeks Sara got news that no parent should ever get. Her daughter, who had just turned five, was diagnosed with a Diffuse Intrinsic Pontine Glioma.

I understand that most people who read this blog (if any do anymore since I kind of bailed on updating it) suffer chronic illnesses and are probably not in positions to donate money, but if you are and you can, or if you can spread word about this campaign, that would be fantastic.

Tuesday, January 1, 2013

just a little update

I always worry when I follow health based blogs that go silent, that the writer has died or their disease has progressed or some awful thing like that. because when you're dealing with a serious disease, those are the places your mind goes.

So not that I think people are sitting around all worried about me, but I just wanted to write this in case anyone was.

I'm not writing in my blog as much because I've found it to be unhealthy for me. When I first got sick this was a great sounding board for me to discuss my life and how much it had changed. But now it's been 6 years and I've remained relatively stable. I've undergone 2 surgeries with general anesthesia, and one with local. I moved across the country, the cat I had for 14 years died, I got a dog, I've gone through lots of massive life changes because of this disease and some massive life changes that had nothing to do with it.

Point being, I've adapted. I don't freak out when I flush or get hives or get tachycardia anymore. It's part of masto life. But if i sit down to write about "bridget as a person with mastocytosis" i have to sit down and think about having mastocytosis, and that really doesn't help me in either the present moment or in the long run.

So for now, I'm going to be quiet. but it's a good thing.

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.