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.
Sunday, April 18, 2010
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.
Sunday, October 4, 2009
for those visiting from the mastocytosis conference
The following is a copy of the relaxation script i use for procedures where anxiety might be an issue or where i don't want to use painkillers. i mentioned this during my little presentation
------------------
Now what I want you to do is show you how you can use your imagination
to enter a state of focused attention and physical relaxation. If you
hear sounds or noises around you, just use these to deepen your
experience.
On one, I want you to do one thing – look up.
On two, do two things – slowly close your eyes and take a deep breath.
On three, do three things – breath out, relax your eyes, and let your
body float.
OK let's begin. One... two... three.
That's good, just imagine your whole body floating, floating right
now, each breath deeper and easier. Right now I want you to imagine
that you are floating somewhere safe and comfortable, in a bath, a
lake, a hot tub, or just floating in this space, each breath deeper
and easier. Notice how with each breath in, you let in a little more
comfort, and with each breath out, you let a little more tension out
of your body... as you let your whole body float, safe and
comfortable, each breath deeper and easier. Continue breathing
deeply, remaining in this state of calm focused concentration. Now
this is your pleasant place to be—safe and sound. So just spend your
time being wherever you would like to be.
Now, if there is any tension or discomfort in your body, you can
notice it, but then transform that sensation. If you feel some
discomfort, you might find it helpful to make that part of your body
feel warmer, as if you were in a bath. This warmth becomes a
protective filter between you and any distracting sensations.
If you have any discomfort or tension right now, imagine that you are
applying a hot pack on it and see what it feels like. Develop the
sense of warmth to filter any discomfort out of the distraction.
With each breath, deeper and easier, your body is floating still,
feeling more and more comfortable with each breath.
OK picture in your mind a screen like a movie screen, TV screen, or a
piece of clear blue sky. First picture a pleasant scene on it. Now
picture a large piece of blue screen divided in half. All right, now
on the left half, picture what you are distracted by on the screen.
Now on the right half, picture what you will do about it, or what you
would recommend someone else to do about it. Keep your body floating
and if you are distracted notice the distraction, but your body and
mind can still float comfortably. Good, you know that whatever
happens there is always something you can do But for now just
concentrate on keeping your body floating and feeling comfortable,
safe and sound.
When finished say – OK, it's time now to come back to the outside
world. We are going to leave this state of trance by counting
backwards from three to one. On three get ready, on two with your
eyes closed roll up your eyes, and on one let your eyes open and take
a deep breath and let it out. That will be the end of your trance
experience, but when you come out of it you will still have the
feeling of comfort that you felt during it. Ready, three – get ready;
two – with your eyes closed roll your eyes up; one – let your eyes
open and take a deep breath.
------------------
Now what I want you to do is show you how you can use your imagination
to enter a state of focused attention and physical relaxation. If you
hear sounds or noises around you, just use these to deepen your
experience.
On one, I want you to do one thing – look up.
On two, do two things – slowly close your eyes and take a deep breath.
On three, do three things – breath out, relax your eyes, and let your
body float.
OK let's begin. One... two... three.
That's good, just imagine your whole body floating, floating right
now, each breath deeper and easier. Right now I want you to imagine
that you are floating somewhere safe and comfortable, in a bath, a
lake, a hot tub, or just floating in this space, each breath deeper
and easier. Notice how with each breath in, you let in a little more
comfort, and with each breath out, you let a little more tension out
of your body... as you let your whole body float, safe and
comfortable, each breath deeper and easier. Continue breathing
deeply, remaining in this state of calm focused concentration. Now
this is your pleasant place to be—safe and sound. So just spend your
time being wherever you would like to be.
Now, if there is any tension or discomfort in your body, you can
notice it, but then transform that sensation. If you feel some
discomfort, you might find it helpful to make that part of your body
feel warmer, as if you were in a bath. This warmth becomes a
protective filter between you and any distracting sensations.
If you have any discomfort or tension right now, imagine that you are
applying a hot pack on it and see what it feels like. Develop the
sense of warmth to filter any discomfort out of the distraction.
With each breath, deeper and easier, your body is floating still,
feeling more and more comfortable with each breath.
OK picture in your mind a screen like a movie screen, TV screen, or a
piece of clear blue sky. First picture a pleasant scene on it. Now
picture a large piece of blue screen divided in half. All right, now
on the left half, picture what you are distracted by on the screen.
Now on the right half, picture what you will do about it, or what you
would recommend someone else to do about it. Keep your body floating
and if you are distracted notice the distraction, but your body and
mind can still float comfortably. Good, you know that whatever
happens there is always something you can do But for now just
concentrate on keeping your body floating and feeling comfortable,
safe and sound.
When finished say – OK, it's time now to come back to the outside
world. We are going to leave this state of trance by counting
backwards from three to one. On three get ready, on two with your
eyes closed roll up your eyes, and on one let your eyes open and take
a deep breath and let it out. That will be the end of your trance
experience, but when you come out of it you will still have the
feeling of comfort that you felt during it. Ready, three – get ready;
two – with your eyes closed roll your eyes up; one – let your eyes
open and take a deep breath.
Tuesday, September 15, 2009
on support groups
i posted this to one of the masto lists in response to someone asking essentially, "well if i get diagnosed, that doesn't really make things better does it?"
and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.
but then, in life, when are there?
Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.
When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.
I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.
So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.
So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though
and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.
but then, in life, when are there?
Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.
When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.
I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.
So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.
So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though
Monday, September 7, 2009
H1N1
So what are you planning in terms of this fall's flu season since it's apparently going to be harsh? Getting the shot? Not getting the shot? Fill me in!
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