Tuesday, October 27, 2009


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.

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

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.