gulp.
taking a deep breath.
plugging my nose.
and...
diving back in.
so it's been quite a little while since i last made attempts to capture my experiences in lj land...and thanks to some gentle nudging and encouragement from sailor_ripley (aka the weirdo on top ;), not to mention what some might possibly deem as harassment, i made a promise that i would try to start writing in this thing again.
it's not like i don't have time--i've been unemployable for several months now... i think it's more of a fear of putting my words, thoughts, the crazy happenings in my head out there. especially when i go back and read some of the stuff i wrote years ago...and cringe. but i haven't been writing *any*thing with any regularity in quite some time and so i think this will be a good forced exercise.
they say to write about what you know... and what i know these days is pericarditis. know anyone suffering from it? save them a trip to the mayo clinic and ask me. i could practically qualify as an expert now, after having surpassed the knowledge of at least four supposedly well-trained cardiologists in regards to this disease. it's been a painful, frustrating, enlightening, and incredibly humbling five months. i'm having to be more present in my physical body than i have ever been before--constantly measuring my energy level and feeling every little and large pain, degree of dizziness, "with it" state, etc. in order to monitor what i can and cannot do today, tonight, this hour and also adjust my meds accordingly. the specialist i saw at the mayo clinic gave me the power to do that which has really helped me to own (and hopefully soonishly overcome) this disease instead of allowing it to own me. such that when i had to face the fact that i was having another attack this last time (about two weeks ago), i hadn't been fearing it up until then...i had just been living my (albeit quite modified) life and enjoying every little thing. like experiencing mary oliver in person speaking and reading from her various books of poetry. someone pretty amazing introduced me to her and i am now forever grateful and indebted. this is a line from one of her poems that has just about been killing me with delight as of late:
Every day
I see or hear
something
that more or less
kills me
with delight,
that leaves me
like a needle
in the haystack
of light. ~Mary Oliver
so true.
another joy as of late? our first snow yesterday...waking up to the world outside my window blanketed in white. even when one sees it every year, there is always something magical and alive about the first snow. yes, of course everything dies in the winter (including one of my indoor plants...boo), but the snow itself takes on a life of its own. its own personality that is distinctly flavored for that moment, that place. as i was driving home last night from a lovely evening with jdcelery and sailor_ripley, i could tell that the taste of this snow's personality is definitely powerful. the streets canvased with black ice, my car swerving and skidding like it hasn't since i left chicago several years ago. definitely a trip.
what's also tripping me out these days is medication. i think that maybe i fixate on things too much--right now a lot of that fixation is on the drugs i take...somewhat due to the fact that i have to think about them all the time, space out lots of little meals in accordance with when i need to take my next pills...but mostly because it weirds me out that i have to take these pills each day and if i don't (if i were to choose not to or if i simply forget), i end up back in the hospital. how bizarre is that?? these little pellets in various shapes, sizes, and colors that i ingest at certain hours are the only things keeping me out of the hospital. it's crazy to think about what's actually going on in one's body at any given point in the day and how easily that can be affected.
there is talk of the surgery to remove my pericardium as of late... it's a pretty extreme surgery and is only being considered because we have almost exhausted every measure to get me off of the meds without much success. my other two main meds are now upped as far as they can go and i am now tapering the dosage of prednisone as slowly as one possibly can--insanely slowly, as opposed to before that was just borderline insanely slowly. so we'll see how it goes this time. i've always been extremely dubious in regards to the surgery, but am especially so ever since what abe told me the other day... her acupuncturist said that she was going to work on her pericardium, telling abe that it is the gateway to the heart. hmm...leaves me wondering what one does or how it renders a person when there is no longer a gateway in place...?
plugging my nose.
and...
diving back in.
so it's been quite a little while since i last made attempts to capture my experiences in lj land...and thanks to some gentle nudging and encouragement from sailor_ripley (aka the weirdo on top ;), not to mention what some might possibly deem as harassment, i made a promise that i would try to start writing in this thing again.
it's not like i don't have time--i've been unemployable for several months now... i think it's more of a fear of putting my words, thoughts, the crazy happenings in my head out there. especially when i go back and read some of the stuff i wrote years ago...and cringe. but i haven't been writing *any*thing with any regularity in quite some time and so i think this will be a good forced exercise.
they say to write about what you know... and what i know these days is pericarditis. know anyone suffering from it? save them a trip to the mayo clinic and ask me. i could practically qualify as an expert now, after having surpassed the knowledge of at least four supposedly well-trained cardiologists in regards to this disease. it's been a painful, frustrating, enlightening, and incredibly humbling five months. i'm having to be more present in my physical body than i have ever been before--constantly measuring my energy level and feeling every little and large pain, degree of dizziness, "with it" state, etc. in order to monitor what i can and cannot do today, tonight, this hour and also adjust my meds accordingly. the specialist i saw at the mayo clinic gave me the power to do that which has really helped me to own (and hopefully soonishly overcome) this disease instead of allowing it to own me. such that when i had to face the fact that i was having another attack this last time (about two weeks ago), i hadn't been fearing it up until then...i had just been living my (albeit quite modified) life and enjoying every little thing. like experiencing mary oliver in person speaking and reading from her various books of poetry. someone pretty amazing introduced me to her and i am now forever grateful and indebted. this is a line from one of her poems that has just about been killing me with delight as of late:
Every day
I see or hear
something
that more or less
kills me
with delight,
that leaves me
like a needle
in the haystack
of light. ~Mary Oliver
so true.
another joy as of late? our first snow yesterday...waking up to the world outside my window blanketed in white. even when one sees it every year, there is always something magical and alive about the first snow. yes, of course everything dies in the winter (including one of my indoor plants...boo), but the snow itself takes on a life of its own. its own personality that is distinctly flavored for that moment, that place. as i was driving home last night from a lovely evening with jdcelery and sailor_ripley, i could tell that the taste of this snow's personality is definitely powerful. the streets canvased with black ice, my car swerving and skidding like it hasn't since i left chicago several years ago. definitely a trip.
what's also tripping me out these days is medication. i think that maybe i fixate on things too much--right now a lot of that fixation is on the drugs i take...somewhat due to the fact that i have to think about them all the time, space out lots of little meals in accordance with when i need to take my next pills...but mostly because it weirds me out that i have to take these pills each day and if i don't (if i were to choose not to or if i simply forget), i end up back in the hospital. how bizarre is that?? these little pellets in various shapes, sizes, and colors that i ingest at certain hours are the only things keeping me out of the hospital. it's crazy to think about what's actually going on in one's body at any given point in the day and how easily that can be affected.
there is talk of the surgery to remove my pericardium as of late... it's a pretty extreme surgery and is only being considered because we have almost exhausted every measure to get me off of the meds without much success. my other two main meds are now upped as far as they can go and i am now tapering the dosage of prednisone as slowly as one possibly can--insanely slowly, as opposed to before that was just borderline insanely slowly. so we'll see how it goes this time. i've always been extremely dubious in regards to the surgery, but am especially so ever since what abe told me the other day... her acupuncturist said that she was going to work on her pericardium, telling abe that it is the gateway to the heart. hmm...leaves me wondering what one does or how it renders a person when there is no longer a gateway in place...?