hows my ms? just look into my eyes!

Simple eye-scan test could track progress of MS

hmmm...well, since scar tissue is the sign that i am showing on the mri, im not sure how helpful to me this will be (i hope to never have brain shrinkage, and take mymeds religiously), and im not sure how i feel about money being spent toward cheaper illness progression tracking instead of ways to slow and even stop as well as reverse progression, but hey, any advertisement/informationct of this illness is better then no advertisement/information...and the equipment for the eye scan costs less then 1/20 of an mri machine (no joke)so even in canada, youll be able to get your ms checked more often, just have the doc look into your eyes

Song of the day:

my hero

Ailing senator returns to Hill
By MARY CLARE JALONICK, Associated Press Writer
40 minutes ago

WASHINGTON - South Dakota Sen. Tim Johnson returned to the Senate on Wednesday physically weaker but saying he anticipates running for re-election next year.
Johnson, a Democrat, has been out since suffering a life-threatening brain hemorrhage nine months ago. The effects of the hemorrhage are clear — he uses a scooter to get around and his words are slow and slurred. But his mind appears sharp, and he gave every indication of wanting to stay.

"It feels good and I'm ready to go," he said after returning to his office.

Johnson had no problem finding answers to questions, but it occasionally took him while to form words. He said he will measure his speech and mobility progress and make a final decision on re-election this fall.

"I anticipate it will be good but you never know," he said. Senate Majority Leader Harry Reid, D-Nev., wasted no time readying for the senator's political future.

"In honor of his first day back in the Senate, help me welcome Tim with a contribution to his campaign," he said in an e-mail to Democratic supporters Wednesday.

living with ms, i often run up against people saying "but you look so good" when i actually take a risk and talk about what it is like living in this body...i send out pictures of my mri's, say, this is what my ms looks like, but lets be honest, very few people can connect a blurry photo of white streaks on the brain
with my ruddy cheeks, bouncy hair and active legs....my ms, you cant see it on the outside but i sure can feel it. i find this very frustrating, as i dont like being doubted by the people in my life

but even worse, i dont want things to be visible and i admire the courage, persistance and commitment senator johnson brings to the table, and i hope his health is strong enough to run for reelection in the fall....maybe even president one day

adversity has so far brought out the fighter in sen. johnson and i hope the voters can put aside this new imperfection and see the man he is (honestly, i know nothing of his polotics, but i intend to look up on it)

ive been told roosevelt could never be president in this world of 24 hour tv news, and maybe thats true, maybe us americans are too shallow to understand that physical appearance is truly a very minor aspect of a leader...but then again, maybe who he is will ring louder then a disability after all


Song of the day: when im gone- phil ochs

necrotizing fasciitis

my god-father (for lack of a better term, since he is of no blood relation to me, but the most important father figure in my life), my god-father, andy, he has necrotizing fasciitis.

the simpler term for this condition is flesh-eating bacteria, and andy was at risk due to his diabetes, chronic steroid use and a recent bedsore that just did not want to heal.

he will be in the hospital for atleast a month....it is bringing up an awful lot for me, around health and illness and death

andy has been giving me my weekly avonex injections (all drugs to help slow the progresion of multiple sclerosis are injectables at this point)for close to ten years now, and i will be taking over that role until he is well again (i WILL NOT think about the 30% mortality rate that comes with necrotizing fasciitis, or about his poor health in general)...

i hate the wird "pray", i feel like it is too attached to religion and cannot do a good job of representing me and how i feel, but i recently read that praying is equal to helping, and in that case, i will pray for andy's recovery and do my best to support his wife through this

Song of the day: shed your skin- indigo girls

changes

wolf creek-a five weekend camping/commnity/personal workshop run by that majickal professor of mine (if you remember anything about her...and if not read how my blog got started)was cancelled for this weekend, and will be rescheduled....i wasnt ready to really say much about it until now, but....

the weekend was sposed to start at 10:00 am on friday, but the majickal professor's mother died at six am that morning.

for me, it really works out best. my left thigh and waist have again contracted,though thankfully the numbness is mild (knocking on wood). i started having problems on thursday, and was almost going to cancel myself, though i got to a place inside where i accepted i could still go, but would have to sleep inside as well as sit out many of the activities.

i received a notice with information on the funeral and shiva...it wasnt for me specifically, but everyone involved in wolf creek this year....i am going to the service but not the shiva, and that decision is based on a few things:
1. iwant to support someone who has been very supportive of me
2. i have never been to a shiva and dont know i want to
3. this is also my therapists aunt that has died and i need to make sure we both feel ok, and i think that shiva is a little too personal and private

i am definitly going to go though, in a bright dress and a supportive mood...

...i would email her in the middle of the night while i was sick, about my pain, my inability to sleep, about my loss (feeling loss, job loss etc...), and she always responded with her positive words, she never pitied me, she stood out from the soft eyes and sympathetic apologies so many people gave me (actually, r, you and k also were positive through my difficulties, not pitying me, and i appreciate it)


poem of the morning: runner at twilight-grace butcher

i move, shining, over dim hills.
the grass unwinds a blur of rivers
on the bottom of the night;
i cross with no bridges.
my hair is heavy with fog,
and my breathing is the force
that spins the universe.
there is more to the spectrum
than i suppesed:
beyond the violet are endless miles
of impossible colors.

-travel well, mrs. schloss

freedom

im relearning my body again....all my talk about being fired, and i went and resigned my position during supervision today (so easy to disown things and make it about THEM, right?)....my numbness started re-escalating at school today, the room i work in is a sauna, and theres nothing to be done about it

this is the kind of social work i wanted to do once upon a time in the land before diagnosis, but i really dont think i physically can-i really want to be kinder to self instead of getting self annoyed for having limitations....and for me, its head first and hard when i decide on something, so to draw back....i am not used to giving up on things, not getting what i want, so this is new too

but there is a possibility i can be transferred to outpatient, and should hear from my supervisors supervisor in a few days....i just need to do social work in a stable environment thats airconditioned, not at an agency and an uncooled inner city school and by doing home visits to the projects- especially in the summer.....and i do still work at the hospital and maybe someone will be close to ready for a vacation soon if the outpatient thing doesnt work out

this is a very different side of me emerging, not bolting when embarrased or "in trouble", which is in total paradox with my tenacity and yet it makes total sense...if im gonna quit im gonna quit as head first and hard as i would work

Song of the day: return to innocence- enigma

check-up with the neurologist part II

i forgot

she also said i need to rest more
and she wrote a letter to my employer
recommending flexibility
and made it clear to me
she'll write a three page letter
explaining the situation
but she doesnt want to talk to them
over the phone
in person

....i think she's really bashful and overwhelmed (hmmm, no wonder i feel a connection with her)

Song of the day: a chair in the sky- joni mitchell

3/5 done: gestalting through the hard parts

one thing that i just have not taken care of is this little assignment from gestalt that was actually due back the first weekend of february but which i never got around to doing. it is three measley questions arounf how i plan to use this training, use gestalt in my practice, in my life...i dislike the questions.

it was a grumpy, painful, quiet drip today. my veins have not been wanting to pop, out, and weve gone in at the same spot each day so far (i refuse to sleep in the needle stuff...i have to be repierced each day) and it totally ached today, and so maynard and i were quiet...he mostly caught up on paper work

while i just stared and my painful paw

neitzche finally felt comfortable around manard, and decided to sit on the couch and watch...unfortunately, he seemed traumatized by the experience

anyhow, my fever finally spiked today, and the mood started swinging. it is the first really beautiful day of the year, i should be outside, and walking, but im tired, tired and uncomfortable, i have adema in the left nakle and my skin is still buzzing, the leg stiff in the invisible cast, waiting waiting for the solumedrol to kick in, and really i just want to go home...

so i drove instead, watching couples, familys, women with dogs walking and biking and pulling strollers- such bitterness and crabiness with the three abreast in the street and the large amounts of cars on the side of the road- how dare they not be more considerate of us drivers!!...and then i thought,

"wait, gestalt it!" youre jealous, and reasonably so, but youre also projecting- think about how joyful it is for everyone out there- to use their bodies, their health" and i felt calm take over me, and i came hoome to care for self and i felt renewed in my decision...and this is one way in which i will be able to use gestalt

Song of the day: joyful girl- ani difranco

home health care: getting to know maynard

my nurse, maynard
the iv on the stand

flushing out the shunt after

maynard is an intesting guy, born and raised in alabama, he tells me about his experience and wish to return to critical care, the adrenaline of life and death emergency, the high spirit of home health care... my optimism and how it affects him...he isnt a care taker, he is just caring, and i am greatful that he is interested in sticking this whole series through with me, coming on monday (his day off) as well...i am a lucky individualk

oh, did i mention i won $75 in the lottery on thursday night? how cool is that!!

Song of the day: wish i- mary fortune express

another intention

so im sitting here, evaluating where i am going with this blog right now.....and i feel narcissistic in a way- am i looking for pity? what is it i am hoping to gain? especially with the photos of the infusion.

but there are two other sides to my thinking...first off, i dont live near my family, and as much as they want to come running to me right now, they are respecting that really, i am feeling like an adult for the first time in my life and i dont feel like i need them here, and this is the best way i can think of to let them feel this with me in another way.

then there is my own experiences with other blogs about ms and what i notice missing the most is the internal reaction...does anybody else wonder what its like inside? do they have anxiety or peace? how do they use both emotions to move forward through out this? what goes on with the people around them? do they withdrawl from them too? how do they know where to draw the line between courage and stupidity in challenging self with whatever condition one may have...everyone is different, true, but i hope over the next few weeks i will be more capable of creating honest, emotional and yet enjoyable to read posts that may speak to someone....and i hope to draw in more people like this one reader i had, janet (hi there! hope you are good !! if you are reading this) who was able to find support in knowing that someone else has been somewhere near the places she has been...

so my intentions are to write my truth if i can and to keep remembering "what is, is" and one thing really will follow the other
Song of the day: three hours- nick drake

home health care 3/23/07

p.s.- the nurse, maynard, is absolutely great, and will be with me for atleast the first three out of five days- maybe ill get a picture of him tomorrow

p.p.s.- i am not crying in the last picture, just trying to shield the lights in a way where i could read the thermometor sticking out of my mouth



Song of the day:

the final day of growth

so if this episode is consistant with past episodes of multiple sclerosis (and so far it feel pretty typical), i have one more day to worry about things getting worse then they currently are...

i have never broken my leg before, but right now, on top of the strange tingling numbness that has enveloped my left side from toe to hip, including my behind, i feel stiff and heavy....i wonder if this is what it feels like to wear a cast....to think of a cast feels normalizing...but ofcourse, no one can see my cast, i look just fine.

i am not ready to talk about the other things that come along with an episode....like my thinking seems to be less stable, as well as my emotions...but i will get there...its actually kind of interesting stuff...

Song of the day: im your captain- grand funk

NUMB!!

damn my MS!! my left leg has gone numb...it started yesterday morning in the foot, and has crept all the way up to the hip...at this point, i am finding it tolerable, i juist dont want it to spread any more...but it can take up to three days to reach its full blown appearance, leaving me until tuesday morning qith the possibility of spreading

often, changes have led to problems for me...my last major episode was in october of 2004, about two months after i started at a new college and a new internship (hmmm, and here i am in a new agency and a new school)

please send me strength and the white light while i use guided imagery to try and keep the spreading at bay...i have gratitude that i have an immune system that is trying to care for me and i keep trying to imagine a little Neuron teacher trying to instill the knowledge that myelin is not the enemy into Immunity...

ms walk

the ms walk is this saturday. i have been a team captain now for two years. many people in my life, when they find out i have a walking team every year, ask me to keep them informed because they would like to walk with me.

ofcourse, none of them do, always too busy...and people also never have money to sponser me.... but my friend tonya is walking with me again this year. my friend robin, who is about 31 weeks pregnant, is also walking with me this year, and her friend emily, whom i have never met, but whom i appreciate for her commitment to this walk is also joining us.

the walk starts at nine am behind tower city amphetheater. my team's name is after enlightenment (tonya said 'thank god were not the basket cases again- last year, all team members were mental health students at case- )and anyone who would like to participate is welcome to come....hope for good weather for me please, last year it was snowing and i was a crabby bitch....

Song of the day: I'm gonna be (500 miles)- crash test dummies