Obviously i don't want to inundate this blog with all the minutiae that goes on in my life because most of it is boring and not relevant. Somehow I doubt y'all care about my videogaming skills.
Two big things have happened since my last post (well I guess three, maybe four. Okay, I hadn't really thought that sentence out at all.)
1) So the doctors were able to retest the remaining bone marrow aspirate after all, and I am apparently c-kit negative. This means that if I wanted to (or if my mastocytosis gets worse) I could potentially try an aggressive treatment like Gleevec. I am not at the point where I want to consider that though. However, I'm also a little leery about my test results. While I am proud of not backing down about the fact that the c-kit mutation wasn't originally tested, the fact remains that the test was done on a less than optimal sample. If I get to a point where I decide to go for more aggressive treatment, I would request having another biopsy done to ensure the proper sample size was taken, just to make sure that there is no mistaking the fact I'm missing the mutation (since it's rare not to have the mutation, and while we'd all like to think we are unique snowflakes, I find it difficult to believe I am a minority in an already teeny cohort).
2) If all goes well, i may be giving a little presentation at the annual TMS conference. My specialist was happy with how well I handled the bone marrow biopsy (considering how frightened I was) and voiced her concern about how many masto patients don't have them done. So she suggested that I give a little presentation on coping mechanisms and what to expect and all of that good stuff. We'll see if it happens. This will also be the first conference that I've been able to get to, being as I don't like flying. Obviously when the date nears I'll have a better idea of what is happening and I'll post more information there.
3) Kidney stuff still hasn't happened. As per my last post, there was lots of drama with anesthesiology. Apparently for whatever reason, the folks in Urology Anesthesia at MGH have never dealt with a masto patient before. Seriously. So now I've got the chief doing my anesthesia now. He called me yesterday and spent over an hour on the phone with me discussing various options for sedation and pain control. Overall it was a very positive experience (the only negative being that I am now being admitted for an overnight stay since they are anxious about the masto acting up, as it can apparently do so later on). I can't stress enough the importance of being an educated patient when it comes to dealing with a condition like this, or any orphan illness. Doctors, while our best asset, are not all versed in rare conditions so the onus lies on us to be able to educate them, or at the very least be able to provide them with resources. It's not easy, and of course it is an annoying additional responsibility, but it is well worth it. We are going to end up in situations where we need to be our own advocates, otherwise we may be presented with treatments that, while healthy for 99% of the population, can be quite dangerous for us (eg narcotic painkillers, nsaids, etc). It was very empowering speaking to this doctor who is obviously on the top of his field for such a long time, and have it be such a respectful and intelligent conversation. I'm still admittedly scared as hell about the surgery (which is on 5/1) but I feel way more confident than I did prior to the conversation.
4) I'm moving (in like, 2 days). Ok so this isn't 100% mastocytosis related, however it sort of is (for me). This is the apartment I got sick in. I remember sitting in the same spot I am now when I had one of my first big mast cell degranulation events, and not knowing if I was having a heart attack or some sort of massive, unprecedented panic attack. While it is a nice apartment, it is filled with a good deal of negative memories at this point. Not that I'm so traumatized I need to flee this space or anything so dramatic, but I felt like a change of scenery would be good. So yeah. New space, new dynamic, I'm looking forward to it.
Otherwise, that's about it. I had my disability hearing and am waiting to get the results back on that. I genuinely hope that that is a short term thing, as it's hard to feel defined by it. I know that there is more to me and this situation and this illness, however it's something I still feel sort of oddly ashamed about, which is obviously something I need to work on. The hearing itself went well. I had 8 doctors fill out paperwork explaining the systemic nature of this illness and how it would negatively impact my ability to work at the current time, and the judge and vocational expert both seemed sympathetic. So now it's a waiting game. an awkward and unpleasant one.
Thursday, April 16, 2009
Monday, March 16, 2009
updates
So the BMB was sort of a disaster. To make a long story short, somehow, somewhere, communication lines got twisted and i was not tested for the c-kit mutation. It doesn't matter how or why it happened. It just did. What we do know is that I have a 10% infiltration and that my mast cells are spindle shaped. So now we know without a shadow of a doubt that I have Indolent Systemic Mastocytosis. We also now have a baseline for mast cell infiltration, should it get worse. They are trying to see if they can test the remaining aspirate for the mutation, but it is unclear if that is possible. So the waiting game continues. Rad.
In other news, last Friday (the 13th!) I was supposed to have lithotripsy as I've got a kidney stone blocking my left kidney. Well, I went through the whole pre screening process at MGH for anesthesia and it still went all sorts of wrong.
this is what i wrote to a mailing list:
Soooo, tomorrow I am scheduled to have my lithotripsy. Tonight I find out that my anesthesiologist (at MGH, as only MGH and Faulker seem to have lithotripsy machines and all my doctors stressed I needed to go to MGH even though that meant scheduling 2 months out since the doctors at MGH would be far more familiar with mastocytosis than at a smaller hospital) has never seen a masto patient. She then tried to reassure me by telling me she'd read some case studies. I then asked her what treatment plan her and my mast cell specialist had come up with since when I went in for my pre-op testing the intake doctor stressed how important communication with my team of physicians would be, specifically my immunologist and my GI specialist since both of them are heavily involved in mast cell patients and surgical protocol. It is imperitive since I know of a few masto patients who ended up having their masto discovered after they flat-lined during simple surgery due to reactions to anesthesia.
Well, she didn't actually call my mast cell specialist (instead for some reason i cannot understand she contacted my endocrinologist, who while awesome, i've seen maybe 4 times), but she did read some papers (even though they've had my immunologist's contact info for like, 2 weeks). She then said if I was uncomfortable with her lack of firsthand knowledge of the disease she'd page my immunologist tomorrow (being as I have to be at MGH at 7am I have no idea what time they were planning on paging her) only my immunologist is going down to DC tomorrow for some important immunology conference. which may be an even bigger deal now that stem cells are back on the table or being looked to be put back on the table.
So I had to spend nearly an hour on the phone with the doctor explaining, again, that no I don't have rast-tested allergies but that I instead have indolent systemic mastocytosis which is not the same as having allergies save for the risk of death due to anaphylaxis. It was awesome that they called me the day before surgery to ask these questions even though I went in for a 3 hour pre-op consult nearly two weeks ago where none of this came up.
In addition to this excitement, I was told by the pre-op anesthesiologist that I would need to meet with the Chief of Anesthesia before the procedure since my case would be tricky. Only
that guy is out of state too now.
So I am so freaking out right now. Since I am about to get my period my mast cells are more active than usual and I've been flushing like mad, I got hit with the not-testing for the c-kit mutation drama fresh in my mind, and now it's like, every possible thing could go wrong for my surgery scheduled for Friday the 13th, something I was never superstitious about until right about now.
Between the pms/masto instability, the fact that my immunologist is not reachable, the fact that my anesthesiologist has never had a masto patient before, the fact I was told to have the surgery at MGH instead of a smaller hospital specifically to avoid having an anesthesiologist
unfamiliar with the disease which meant delaying surgery for almost nearly 2 months, the fact that the Cheif who I was apparently "supposed" to speak with due to the complicated nature of my case is also unreachable, has left me feeling very very very uncomfortable with the idea of having surgery tomorrow. I am about 10k times more anxious than I was about the BMB, and I honestly am wondering if, if delaying the surgery to fix the above messed up variables won't cause renal damage, if it wouldn't be worth rescheduling. Of course, I would've liked to have known all this before the night before the surgery too, so as not to have to make a snap decision first thing in the morning after i get to the hospital.....
It is so frustrating. I mean, MGH and Dana Farber are considered to be some of the best hospitals in the world and after the past two weeks they make me want to put my head through the wall.
----------------
After this, I saw my surgeon who was also unhappy with how things were handled and then decided to postpone the surgery. It honestly seemed like the anesthesiologist was more excited to have a House-like patient than actually listening to what the patient was saying. So now it looks like I am having the procedure done on the 27th now, with a dedicated anesthesiologist and all of that.
And then after that I have my disability hearing. yeehaw.
In other news, last Friday (the 13th!) I was supposed to have lithotripsy as I've got a kidney stone blocking my left kidney. Well, I went through the whole pre screening process at MGH for anesthesia and it still went all sorts of wrong.
this is what i wrote to a mailing list:
Soooo, tomorrow I am scheduled to have my lithotripsy. Tonight I find out that my anesthesiologist (at MGH, as only MGH and Faulker seem to have lithotripsy machines and all my doctors stressed I needed to go to MGH even though that meant scheduling 2 months out since the doctors at MGH would be far more familiar with mastocytosis than at a smaller hospital) has never seen a masto patient. She then tried to reassure me by telling me she'd read some case studies. I then asked her what treatment plan her and my mast cell specialist had come up with since when I went in for my pre-op testing the intake doctor stressed how important communication with my team of physicians would be, specifically my immunologist and my GI specialist since both of them are heavily involved in mast cell patients and surgical protocol. It is imperitive since I know of a few masto patients who ended up having their masto discovered after they flat-lined during simple surgery due to reactions to anesthesia.
Well, she didn't actually call my mast cell specialist (instead for some reason i cannot understand she contacted my endocrinologist, who while awesome, i've seen maybe 4 times), but she did read some papers (even though they've had my immunologist's contact info for like, 2 weeks). She then said if I was uncomfortable with her lack of firsthand knowledge of the disease she'd page my immunologist tomorrow (being as I have to be at MGH at 7am I have no idea what time they were planning on paging her) only my immunologist is going down to DC tomorrow for some important immunology conference. which may be an even bigger deal now that stem cells are back on the table or being looked to be put back on the table.
So I had to spend nearly an hour on the phone with the doctor explaining, again, that no I don't have rast-tested allergies but that I instead have indolent systemic mastocytosis which is not the same as having allergies save for the risk of death due to anaphylaxis. It was awesome that they called me the day before surgery to ask these questions even though I went in for a 3 hour pre-op consult nearly two weeks ago where none of this came up.
In addition to this excitement, I was told by the pre-op anesthesiologist that I would need to meet with the Chief of Anesthesia before the procedure since my case would be tricky. Only
that guy is out of state too now.
So I am so freaking out right now. Since I am about to get my period my mast cells are more active than usual and I've been flushing like mad, I got hit with the not-testing for the c-kit mutation drama fresh in my mind, and now it's like, every possible thing could go wrong for my surgery scheduled for Friday the 13th, something I was never superstitious about until right about now.
Between the pms/masto instability, the fact that my immunologist is not reachable, the fact that my anesthesiologist has never had a masto patient before, the fact I was told to have the surgery at MGH instead of a smaller hospital specifically to avoid having an anesthesiologist
unfamiliar with the disease which meant delaying surgery for almost nearly 2 months, the fact that the Cheif who I was apparently "supposed" to speak with due to the complicated nature of my case is also unreachable, has left me feeling very very very uncomfortable with the idea of having surgery tomorrow. I am about 10k times more anxious than I was about the BMB, and I honestly am wondering if, if delaying the surgery to fix the above messed up variables won't cause renal damage, if it wouldn't be worth rescheduling. Of course, I would've liked to have known all this before the night before the surgery too, so as not to have to make a snap decision first thing in the morning after i get to the hospital.....
It is so frustrating. I mean, MGH and Dana Farber are considered to be some of the best hospitals in the world and after the past two weeks they make me want to put my head through the wall.
----------------
After this, I saw my surgeon who was also unhappy with how things were handled and then decided to postpone the surgery. It honestly seemed like the anesthesiologist was more excited to have a House-like patient than actually listening to what the patient was saying. So now it looks like I am having the procedure done on the 27th now, with a dedicated anesthesiologist and all of that.
And then after that I have my disability hearing. yeehaw.
Friday, February 27, 2009
oh hi there
Eep, sorry i fell off the face of the planet for a while there. I've been dealing with a kidney stone which is by far one of the more annoying things in life. aside from setting off all sorts of masto symptoms, that sucker hurts, a lot. I've also been dealing with apartment hunting, as my partner and i decided we wanted to live back in the city. we ended up with a loft in a really neat artist collective and i cannot wait to move in...but i digress.
Ok, so my last post was all "whoo bmb time around the corner" (actually it was more "ooooh noooooo") and that corner has come and gone (though the procedure happened a week later than originally intended, and as such I am still waiting for the results which I should get by tomorrow or Monday). I had my bmb performed at Dana Farber Cancer Institute in Boston. Oh such a somber place. I'm always fascinated by the direct relation between how serious the field the specialist works in seems proportionate to how nice people are in the office. At primary care they wouldn't notice if you were on fire, but when you are at one of the top cancer hospitals in the country, everyone is way nice.
the procedure itself was, honestly, a cakewalk. the worst part of it by far was my anxiety, which was at banner levels for me. anxiety is something that has been hard for me to cope with since my diagnosis, since I am afraid of things going badly in ways i am unfamiliar with. so far in every case my anxiety has just added to the situation and made it worse.
to avoid freaking out and trying to volley kick a doctor, i opted to take 1mg klonopin an hour before, and then 1mg ativan right before. i was not looped out of my mind by any stretch of the imagination, but i felt pretty warm and comfortable. it helped that my doctor was stellar and my husband was allowed to stay in the room with me.
the procedure itself was way less bells and whistles than i expected. since i went to Dana Farber wearing my yoga pants and a loose shirt they didn't have me undress, and just pulled my pants down and my shirt up. then i got a shot of a local anesthetic (not lidocaine, i forget what it was) and that burned really badly. the shot hurt since anesthetics seem to burn by nature, and because the needle was stuck really deep in there to numb everything from the surface of the bone up to the top layer of skin.
after that they went in and did the aspirate (which is the collection of liquid marrow) and then got the bone marrow sample. aside from the local which hurt really badly really briefly, nothing else was particularly painful. it felt weird, and sort of gross and alien to have my insides siphoned out, but overall it was not a super unpleasant experience. there is pressure and feelings that are completely unfamiliar, but i think that as long as your doctor knows what they are doing, you aren't freaking out, and you remember to breathe into the pain (sort of like lamaze or meditation), you'll be set. it is also pretty quick once you get in there and get prepped. the anticipation really is the worst part.
in the essence of documentation, i had my partner take pictures of the procedure. however needs freak them out, so they didn't get any good shots of me getting poked though. i decided (and the doctors agreed) that while i was completely fascinated by the procedure, it would not be in my best interest to actually watch since the gauge or length of the needles might upset me.
so here are some pictures of my bmb to show how absolutely much of a non issue the whole procedure was. i've had worse dentist experiences when it comes to pain.
pictures from the procedure
Ok, so my last post was all "whoo bmb time around the corner" (actually it was more "ooooh noooooo") and that corner has come and gone (though the procedure happened a week later than originally intended, and as such I am still waiting for the results which I should get by tomorrow or Monday). I had my bmb performed at Dana Farber Cancer Institute in Boston. Oh such a somber place. I'm always fascinated by the direct relation between how serious the field the specialist works in seems proportionate to how nice people are in the office. At primary care they wouldn't notice if you were on fire, but when you are at one of the top cancer hospitals in the country, everyone is way nice.
the procedure itself was, honestly, a cakewalk. the worst part of it by far was my anxiety, which was at banner levels for me. anxiety is something that has been hard for me to cope with since my diagnosis, since I am afraid of things going badly in ways i am unfamiliar with. so far in every case my anxiety has just added to the situation and made it worse.
to avoid freaking out and trying to volley kick a doctor, i opted to take 1mg klonopin an hour before, and then 1mg ativan right before. i was not looped out of my mind by any stretch of the imagination, but i felt pretty warm and comfortable. it helped that my doctor was stellar and my husband was allowed to stay in the room with me.
the procedure itself was way less bells and whistles than i expected. since i went to Dana Farber wearing my yoga pants and a loose shirt they didn't have me undress, and just pulled my pants down and my shirt up. then i got a shot of a local anesthetic (not lidocaine, i forget what it was) and that burned really badly. the shot hurt since anesthetics seem to burn by nature, and because the needle was stuck really deep in there to numb everything from the surface of the bone up to the top layer of skin.
after that they went in and did the aspirate (which is the collection of liquid marrow) and then got the bone marrow sample. aside from the local which hurt really badly really briefly, nothing else was particularly painful. it felt weird, and sort of gross and alien to have my insides siphoned out, but overall it was not a super unpleasant experience. there is pressure and feelings that are completely unfamiliar, but i think that as long as your doctor knows what they are doing, you aren't freaking out, and you remember to breathe into the pain (sort of like lamaze or meditation), you'll be set. it is also pretty quick once you get in there and get prepped. the anticipation really is the worst part.
in the essence of documentation, i had my partner take pictures of the procedure. however needs freak them out, so they didn't get any good shots of me getting poked though. i decided (and the doctors agreed) that while i was completely fascinated by the procedure, it would not be in my best interest to actually watch since the gauge or length of the needles might upset me.
so here are some pictures of my bmb to show how absolutely much of a non issue the whole procedure was. i've had worse dentist experiences when it comes to pain.
pictures from the procedure
Wednesday, January 14, 2009
2/9/09
i get my bone marrow biopsy. if anyone has any stories to share (ideally positive) i'd love to hear them. i'm scared witless to say the least.
Sunday, January 4, 2009
meds help
I can be reached at bridget.mcgraw@gmail.com
UGH!
Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?
Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.
Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.
As it stands right now I'm taking:
200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)
What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?
My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.
Anyway, any and all help would be MUCH appreciated.
UGH!
Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?
Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.
Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.
As it stands right now I'm taking:
200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)
What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?
My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.
Anyway, any and all help would be MUCH appreciated.
Friday, December 19, 2008
wow, just wow
I feel like I complain so much about the main masto listserv that I should seriously stop referring people there. It's become such a toxic and nasty environment, something that is painfully obvious and something no one wants to discuss. Sometimes (and no offense listreaders who may be reading this) it's like dealing with a bunch of children (and I am including myself here because I would be remiss to say that I am a flawless bastion of perfection or something)...which is awesome since I'm one of the younger people on the list.
In September, some big drama transpired and people started leaving the list in droves. It has been obvious since then too, honestly. Posting in down, seems to be frequently from new people, a lot of more frequent posters barely post...it seems like a relatively unpleasant environment at times. I honestly don't know all the background stuff that transpired, but it wasn't pretty overall and no one left the situation in a 100% good place. Instead of addressing our lord of the flies type dynamic, it all got swept under the rug and the list moved on. sort of.
A few days ago someone accidentally sent an email to the list that was meant to be private. In the email they said a few unflattering things about another list member. This is an of itself wasn't awesome, but they followed it up pretty much saying, "yeah I don't care that my post could potentially humiliate the list member I slagged on, I'm glad to have gotten it off my chest."
Now, I don't live in some fairytale planet where we all get along and are best friends and sing kumbaya next to the campfire every night. I assume that people are going to dislike other people and possibly think the worst, but to be so dismissive of the fact that something you wrote could hurt someones feelings, to me, is tacky and disrespectful. While I don't censor myself on this blog, and let the occasional swear word slip in, I make a serious effort to not swear on the list because there are a few ardent Christians who are seriously offended by that sort of language. Obviously if they read this they know that sometimes I don't use the most pristine language. This is also my little corner of blog-dom, so I'm kind of allowed to call the shots. I obviously don't view the list the same way, and when I do slip up, I apologize. Not because it's what I "should" do, but because I feel bad.
But this nonsense just seems to escalate and people seem to get more angry when it's suggested, "no really, we need to start addressing this shit because it's obviously not going away". I dunno, I'm not one to avoid an unpleasant topic or situation. I'm not saying I seek conflict out, but when it continues or seems to have long term ramifications, I don't think ignoring it is the best thing ever.
I have a few huge pet peeves, and one of them (when dealing with mailing list etiquette) is when everyone starts posting to drop a subject, why a subject sucks, why the people discussing the subject suck...and it's so fucking counter productive it makes me want to tear my hair out. If it bothers you, don't get involved. If you don't care, don't get involved. But when people are emotionally engaged in something, if you tell them they are a moron, chances are it's going to escalate things. You don't like a situation, you think you are better or unaffected by a situation? IGNORE IT. Don't waste the time dismissing people who feel differently.
I just am left feeling like I can't trust the list. Whenever there is some high drama I inevitably get between 5-10 private emails detailing why some person or another is a (insert reason why they might be lame) person and should be avoided. I don't like it because it is starting to feel like we may have teams in the background with these invisible lines drawn out in the sand...sort of "either you're with us or against us" type mentality going on. I don't want to get involved with people's drama off the list. If I have something to say to someone, chances are I will say it publicly because I don't want to take part in some cloak and dagger bullshit in the shadows. I prefer there to be a level of transparency in how I operate. Which again is why I'd prefer the list to actually try to solve interpersonal problems as opposed to ignoring them till they go away.
I mean, I don't know, I'd rather deal with a short burst of intense discomfort than trying to ignore a small nagging one for months on end...which is unfortunately at odds with how things are apparently dealt with.
It's just annoying because I know the list can be better than that. Either that or it's all been phony sympathy and empathy meanwhile everyone is just waiting to see someone mess up and then attack.
In September, some big drama transpired and people started leaving the list in droves. It has been obvious since then too, honestly. Posting in down, seems to be frequently from new people, a lot of more frequent posters barely post...it seems like a relatively unpleasant environment at times. I honestly don't know all the background stuff that transpired, but it wasn't pretty overall and no one left the situation in a 100% good place. Instead of addressing our lord of the flies type dynamic, it all got swept under the rug and the list moved on. sort of.
A few days ago someone accidentally sent an email to the list that was meant to be private. In the email they said a few unflattering things about another list member. This is an of itself wasn't awesome, but they followed it up pretty much saying, "yeah I don't care that my post could potentially humiliate the list member I slagged on, I'm glad to have gotten it off my chest."
Now, I don't live in some fairytale planet where we all get along and are best friends and sing kumbaya next to the campfire every night. I assume that people are going to dislike other people and possibly think the worst, but to be so dismissive of the fact that something you wrote could hurt someones feelings, to me, is tacky and disrespectful. While I don't censor myself on this blog, and let the occasional swear word slip in, I make a serious effort to not swear on the list because there are a few ardent Christians who are seriously offended by that sort of language. Obviously if they read this they know that sometimes I don't use the most pristine language. This is also my little corner of blog-dom, so I'm kind of allowed to call the shots. I obviously don't view the list the same way, and when I do slip up, I apologize. Not because it's what I "should" do, but because I feel bad.
But this nonsense just seems to escalate and people seem to get more angry when it's suggested, "no really, we need to start addressing this shit because it's obviously not going away". I dunno, I'm not one to avoid an unpleasant topic or situation. I'm not saying I seek conflict out, but when it continues or seems to have long term ramifications, I don't think ignoring it is the best thing ever.
I have a few huge pet peeves, and one of them (when dealing with mailing list etiquette) is when everyone starts posting to drop a subject, why a subject sucks, why the people discussing the subject suck...and it's so fucking counter productive it makes me want to tear my hair out. If it bothers you, don't get involved. If you don't care, don't get involved. But when people are emotionally engaged in something, if you tell them they are a moron, chances are it's going to escalate things. You don't like a situation, you think you are better or unaffected by a situation? IGNORE IT. Don't waste the time dismissing people who feel differently.
I just am left feeling like I can't trust the list. Whenever there is some high drama I inevitably get between 5-10 private emails detailing why some person or another is a (insert reason why they might be lame) person and should be avoided. I don't like it because it is starting to feel like we may have teams in the background with these invisible lines drawn out in the sand...sort of "either you're with us or against us" type mentality going on. I don't want to get involved with people's drama off the list. If I have something to say to someone, chances are I will say it publicly because I don't want to take part in some cloak and dagger bullshit in the shadows. I prefer there to be a level of transparency in how I operate. Which again is why I'd prefer the list to actually try to solve interpersonal problems as opposed to ignoring them till they go away.
I mean, I don't know, I'd rather deal with a short burst of intense discomfort than trying to ignore a small nagging one for months on end...which is unfortunately at odds with how things are apparently dealt with.
It's just annoying because I know the list can be better than that. Either that or it's all been phony sympathy and empathy meanwhile everyone is just waiting to see someone mess up and then attack.
Tuesday, December 2, 2008
grrrrrr
before the holiday I was telling my psychologist how optimistic I was about things. I had the driving down, new psychiatrist, things seemed cool. Ever since Friday I've been shocking on and off. Right now it seems the most likely culprit is my husband (haha!) as he was sick for a week and chances are I picked up his cold (I guess I have some swollen lymph nodes and my right ear is inflamed) and the cold/virus/whatever is causing my mast cells to get all up in arms.
Soooo I'm on Atarax until this calms down. Atarax is very soothing, which is really needed since I was experiencing some serious tachycardia during my attacks...and tachycardia is really really scary, and of course anxiety leads to more tachycardia which leads to...you get the picture.
so that is where things stand for me.
Soooo I'm on Atarax until this calms down. Atarax is very soothing, which is really needed since I was experiencing some serious tachycardia during my attacks...and tachycardia is really really scary, and of course anxiety leads to more tachycardia which leads to...you get the picture.
so that is where things stand for me.
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