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.
Monday, January 16, 2012
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.
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.
Tuesday, July 13, 2010
hello hello
not much to update on the health front. my tryptase went up some, but by like, 10pts which is essentially negligible. I've flown 3x since my last post, the most recent was to move cross country from Boston to Santa Monica.
This is going to be an intense experience. In Boston I was spoiled by having some of the best healthcare ever available to me thanks to B&W's masto center, but here I'm on my own. There is a masto doctor in Long Beach, but I don't know much about him (he's a pediatrician who sees adult masto patients) and that's all good and well (though about an hour away)
I will go see some of my masto doctors in Boston in Sept as I am going back there for a wedding and my doctors worked to fit me into their schedules. Considering I'm relatively stable and only saw them once every few months, I think I could even keep this schedule up if need be.
Lots of acclimating going on. right now I don't have the majority of my stuff (we hired movers so it's in transit) and am staying in a furnished apartment.
I've noticed some things...I don't care about my health lately, or more specifically, I'm not hyper focused on it. I've been eating new foods (i've been adhering religiously to the low histamine diet, and even then i've been really scared to try new foods, but i'm slowly branching out) and trying new stuff when my husband isn't around. i went for a long walk alone to the beach yesterday. i haven't gotten a pcp yet.
i mean i know i need to do that last one, and i'll work on it this week, but the fact that i'm not freaking out...that seems good. it seems like acclimation.
one thing i'm curious about exploring out here is medical marijuana. i have had an increase of bone pain (i finally had a nuclear imaging test done in...may? which showed lesions in my spine and hip) and i sleep poorly due to sky high pgd2 levels and i'm guessing that weed could help with those things. i don't even know how one goes about it but i think it might be worth pursuing since I didn't fare too well on aspirin (i am going to try it again) and i don't want to fry my liver with tylenol.
otherwise, not too much else to report i guess. i have a swollen lymph node on my neck i might need to have biopsied, though chances are it's irritated because i've been getting all creative with my hair lately and i have some scalp irritation. of course i was all OMG LYMPHOMA but my doctors all told me to calm down (this was pre-move obviously)
This is going to be an intense experience. In Boston I was spoiled by having some of the best healthcare ever available to me thanks to B&W's masto center, but here I'm on my own. There is a masto doctor in Long Beach, but I don't know much about him (he's a pediatrician who sees adult masto patients) and that's all good and well (though about an hour away)
I will go see some of my masto doctors in Boston in Sept as I am going back there for a wedding and my doctors worked to fit me into their schedules. Considering I'm relatively stable and only saw them once every few months, I think I could even keep this schedule up if need be.
Lots of acclimating going on. right now I don't have the majority of my stuff (we hired movers so it's in transit) and am staying in a furnished apartment.
I've noticed some things...I don't care about my health lately, or more specifically, I'm not hyper focused on it. I've been eating new foods (i've been adhering religiously to the low histamine diet, and even then i've been really scared to try new foods, but i'm slowly branching out) and trying new stuff when my husband isn't around. i went for a long walk alone to the beach yesterday. i haven't gotten a pcp yet.
i mean i know i need to do that last one, and i'll work on it this week, but the fact that i'm not freaking out...that seems good. it seems like acclimation.
one thing i'm curious about exploring out here is medical marijuana. i have had an increase of bone pain (i finally had a nuclear imaging test done in...may? which showed lesions in my spine and hip) and i sleep poorly due to sky high pgd2 levels and i'm guessing that weed could help with those things. i don't even know how one goes about it but i think it might be worth pursuing since I didn't fare too well on aspirin (i am going to try it again) and i don't want to fry my liver with tylenol.
otherwise, not too much else to report i guess. i have a swollen lymph node on my neck i might need to have biopsied, though chances are it's irritated because i've been getting all creative with my hair lately and i have some scalp irritation. of course i was all OMG LYMPHOMA but my doctors all told me to calm down (this was pre-move obviously)
Sunday, April 18, 2010
i'm so bad at keeping this up
I've been curious/concerned about facebook lately and its influence on the masto community. recently this sort of meme-thing went around about how Christopher Reeve had mastocytosis and it might have played a role in his death (i guess the story goes he had an anaphylactic reaction to antibiotics) Now, I don't know the specifics of his death, I wasn't there, I don't know the Reeve family (though I do support their foundation, as even though they don't support masto research, stem cell stuff may help us in the future) so I can't comment on whether or not there is any validity behind the claim that mastocytosis killed Christopher Reeve. I mean it's possible. It's also known that he had a severe spinal injury that most people don't survive. I know when I get a cold or cut or bruise myself badly my mast cells flare up into full effect. I can't even imagine the impact of a spinal injury would do, of what being a quadriplegic would do to the mast cells.
What I -do- know, without reservation, is that even with mastocytosis, Christopher Reeve was superman. He was a student at Cornell, a stage and film actor, he was an athlete, an equestrian, he was asked to run for congress....he had a ridiculously full life -and- he had mastocytosis. He did all that in spite of the disease we have.
Don't let the circumstances of his death (which are cloudy) overshadow the fact that he achieved a lot. he lived. fully.
What upsets me is that i posted a very abbreviated version of this on someone's page on facebook (who constantly posts about masto in the most negative and ill informed light, inferring we're going to die, that we will need organ transplants) and they "unfriended" me and then wrote some passive aggressive shit about me.
Now, I'm all for forming a community for people who deal with this disease. I think it's crucial, I think we need each other. But we also need to not throw daily pity parties and spread around dangerous misinformation too...and I see a lot of that happening on FB, way moreso than I do on the various mailing lists that I've written about in the past. It's interesting because both the mailing lists and FB provide us with community, but they seem to come from completely different angles. I almost get -scared- when I feel like I'm "teaching" someone who has masto about their disease, especially if they're being very vocal about stuff that doesn't make sense.
None of this makes sense. We'd need to be MDs or PhDs for this to all make sense, and I get that. But I guess I just am wondering if I feel the need to be educated more important than the need for masto-friends...But don't take this to mean that I don't want masto friends, because I totally do. I want people that I can relate to, who won't look at me with pity or fear if I get flushy or rashed up.
meh.
In other news, I might have to step on a plane soon for the first time since my diagnosis. It's still very up in the air at the moment, but it's quite nerve wracking too.
What I -do- know, without reservation, is that even with mastocytosis, Christopher Reeve was superman. He was a student at Cornell, a stage and film actor, he was an athlete, an equestrian, he was asked to run for congress....he had a ridiculously full life -and- he had mastocytosis. He did all that in spite of the disease we have.
Don't let the circumstances of his death (which are cloudy) overshadow the fact that he achieved a lot. he lived. fully.
What upsets me is that i posted a very abbreviated version of this on someone's page on facebook (who constantly posts about masto in the most negative and ill informed light, inferring we're going to die, that we will need organ transplants) and they "unfriended" me and then wrote some passive aggressive shit about me.
Now, I'm all for forming a community for people who deal with this disease. I think it's crucial, I think we need each other. But we also need to not throw daily pity parties and spread around dangerous misinformation too...and I see a lot of that happening on FB, way moreso than I do on the various mailing lists that I've written about in the past. It's interesting because both the mailing lists and FB provide us with community, but they seem to come from completely different angles. I almost get -scared- when I feel like I'm "teaching" someone who has masto about their disease, especially if they're being very vocal about stuff that doesn't make sense.
None of this makes sense. We'd need to be MDs or PhDs for this to all make sense, and I get that. But I guess I just am wondering if I feel the need to be educated more important than the need for masto-friends...But don't take this to mean that I don't want masto friends, because I totally do. I want people that I can relate to, who won't look at me with pity or fear if I get flushy or rashed up.
meh.
In other news, I might have to step on a plane soon for the first time since my diagnosis. It's still very up in the air at the moment, but it's quite nerve wracking too.
Thursday, April 15, 2010
not much to say other than
if you haven't heard about it please take this important survey
http://www.tmsforacure.org/survey.shtml
http://www.tmsforacure.org/survey.shtml
Thursday, March 11, 2010
Tuesday, October 27, 2009
huh
i have not had a lot to say lately. my health went waaaaay down south after the conference, though i think that was more related to my trying to taper off one of my meds than anything. apparently not a good idea. nothing feels worse than having a hardcore relapse, especially when you've been feeling moderately ok.
otherwise things are ok. i cut my hair short and dyed it purple and black, i decided i needed a change and i love it.
also for halloween this year i am going to be a skeleton, specifically one of those mexican day of the dead skeletons. it's a pretty neat costume that involves coating myself in black and white greasepaint and crystals. i like halloween a lot, i like costumes a lot in general. i like the opportunity to step outside of who i am, even for a short time i guess.
the conference itself was good. i was surprised at how comforting it was meeting so many other people dealing with masto...and i was duly impressed with how many of them seem committed to living their lives to the fullest...i felt sort of inadequate in comparison. i gave a presentation which was well received (though to be fair i spoke after a hematologist who told us we all had cancer - check the TMS page for the board's rebuttal on that one) and all in all i had a good time. i learned some, but i sat out the panel discussions that i thought would either stress me out too much (osteoporosis) or ones that didn't apply (mcad/pediatric stuff)
people eat a lot more food than i do. which is not to say i'm skinny, cause i'm not. but my diet is really really limited, and a lot of that has more to do with my sense of fear than anything. food and anxiety are my top triggers. so one of my goals is to try to expand upon my diet somewhat.
otherwise i am not too sure what to write about. i did a urine histamine for dr castells last week that came back as -12- so i'm guessing there was some sort of error there since last time i did the test it was 600. i'm still waiting on my tryptase and all of that good stuff.
otherwise things are ok. i cut my hair short and dyed it purple and black, i decided i needed a change and i love it.
also for halloween this year i am going to be a skeleton, specifically one of those mexican day of the dead skeletons. it's a pretty neat costume that involves coating myself in black and white greasepaint and crystals. i like halloween a lot, i like costumes a lot in general. i like the opportunity to step outside of who i am, even for a short time i guess.
the conference itself was good. i was surprised at how comforting it was meeting so many other people dealing with masto...and i was duly impressed with how many of them seem committed to living their lives to the fullest...i felt sort of inadequate in comparison. i gave a presentation which was well received (though to be fair i spoke after a hematologist who told us we all had cancer - check the TMS page for the board's rebuttal on that one) and all in all i had a good time. i learned some, but i sat out the panel discussions that i thought would either stress me out too much (osteoporosis) or ones that didn't apply (mcad/pediatric stuff)
people eat a lot more food than i do. which is not to say i'm skinny, cause i'm not. but my diet is really really limited, and a lot of that has more to do with my sense of fear than anything. food and anxiety are my top triggers. so one of my goals is to try to expand upon my diet somewhat.
otherwise i am not too sure what to write about. i did a urine histamine for dr castells last week that came back as -12- so i'm guessing there was some sort of error there since last time i did the test it was 600. i'm still waiting on my tryptase and all of that good stuff.
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