the hopeless hours

steroids are not a quick fix answer...it still takes weeks and weeks to heal from an ms episode, and i have these moments in the middle of the night (like last night) where i wake up with my waist and torso clenched up, painful, and cry to myself "why bother!! im never going to be better! its always going to feel this bad"

but ten minutes later, the cramp backs off a little, and i feel a smidgen better, and can tell that even though the world feels grainy and cramped, i actually have some spots of full feeling on the bottoms of my feet

but the brain is an electrical system of a sort, and as i visualize a crop of "doozers" (for those of you who remember fraggle rock) rebuilding neural networks for signals to make it all the way up from toe tip to spinal collumn without interruption, its hit and miss....i will suddenly feel great, and then the whole left side will "short circuit" again like a string of christmas lights...if one bulb is screwed in wrong, the whole chain goes haywire

its just a time of growth i guess

Song of the day: id like to teach the world to sing- the new seekers

now begins the healing

and what an uncomfortable thing healing can be, and painful....but atleast i know im on my way, despite the injection site pains, and all my muscles aching, and confusing signals from brain to limbs, there are spots on the bottom of my feet that i am completely aware of

thank you mom, andy and rosanna, robin and luke, hess, lizanne and adam, brad, ms. johnson, kirsti, tonya, alex, rumblefish, jody, sharon, cavana, jackie, dan-o, karryl and jen...and of my nurses, maynard and chris- every bit of support mattered

please feel free to join or donate to my team for the ms walk on april 28, 2007...and please feel free to scroll down on this page and have a deeper understanding of living with this illness (not to be self involved, but id rather use this experience for good then be bitter about it), afterenlighenment

Song of the day:

done!!

so all said and over, i said goodbye to maynard and have finished the infusions entirely...there all ready seems to be some healing in the right foot, and i am tired of talking about this stuff...i hope by tomorrow i will move on to something else, but i felt like i should close up this intense, uncomfortable series of posts...

Song of the day: changes- the birds

day four, a day late

i had a different nurse for infusion four, an adept woman named chris who shared a little about her children, was interesting and interested and very good at threading my skinny little vein with a baby needle...my ankle got even bigger and man, was my therapist unhappy with the emotionality that comes with steroids...although, really, i think that sometimes, my honest and challenging nature scares her...

what i can talk about instead of todays infusion are a few other things that occured over the weekend...on saturday, my friend brad took me to dinner...brad has his own health issues to deal with, and it is a definite bonding point for us. he almost always brings little gifts to me when ever he sees me too...this week it was visualization cd's that he finds helpful

and finally, i thought i would point out that despite all the special treatment i am going through for this episode, i need to keep up the regular routine, and sunday night involved that weekly avonex shot, come hell or high water

we will see what today, and this final infusion will bring...maynard will be here in about ten minutes and i ofcourse will get a goodbye picture...and then maybe its time to go back to non-medical posts...but these moments just seemed so important

Song of the day: song to a seagull- 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

...and life goes on

so robin brought the baby over to play this afternoon and we thouroughly enjoyed ourselves all around.


we played some music...
and even baby wanted to play along...
i am filled with gratitude for the support system that has built itself up around me over the past few years

Song of the day:everybody's free-quinton tarver

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:

hoping it didnt take too long for healing

day seven, now the left side of torso is numbed...and i am learning more and more about trust and patience...

all day at work yesterday, i kept hoping the visiting nurses would call, so i picked up every call that came along...and ill tell you., i heard from insurance verifiers twice, my mother three times...even my god-father had to pop in at a point- someone had called three times while he was in the shower but left no message, and he was worried all my limbs had stopped working and that i was calling him for a ride to the hospital...

so, to make a long story short, a delivery called at seven thirty and dropped the solumedrol at my house and around 8:30, the nurse finally called and said he'd be over at nine a.m.

so here hess and i sit, having coffee at an unusual coffee house closer to home so that its just a quick jaunt back for the meds....

now i just hope that the solumedrol works like it has in the past...

Song of the day: rhiannon- stevie nicks

day 6

and spreading still, up the left side of back, my steroids have still not been scheduled (though i hope to start by tomorrow)

i feel burdensome, as i reach out for anything i feel might support me...(sorry, j, if i offended you)

but im still moving, going to work, getting productivity hours, making connections with students and parents

yesterday, for the first time when the other worker wasnt in the room, all the kids gathered around my desk instead of hers, it was good

Song of the day: summertime- ella fitzgerald and louis armstrong

another morning

so the rate of progression has slowed this morning, the right foot and calf have been slower to escalate...called the mellen center for ms treatment and research at the cleveland clinic yesterday morning....the nurse called back at seven last night, and hopefully i will get in to see my doctor today as i want to start steroids by tomorrow evening- there is just too much happening to be as distracted as i am....work, gestalt is in a month, wolf creek in two and recovery can take months and months when not aided by steroids...they will do home health care- its cheaper, which is good because i am not positive my new insurance will pay for this despiute the fact i have not had documented care for my ms since feb. of 2006 and the pre-existing condition clausze says it wont pay for any condition that has been treated in the past six months for the first six months on the insurance plan, im thinking they will find a way around that

i am really hoping that these ms posts will help someone, whether a person living with a chronic condition such as ms, or a family member who wants to be able to better understand...if you read this, and find use from it, or feel that i could be proving more or something more relevant, please let me know...either comment in the comment section, or feel free to email me (which i believe you can do by clicking on the "view whole profile" tab located in the right hand collumn )Song of the day:

and the right foot says...

right foot has started feeling a little numbish as well...i hate it that the times in life that should be exciting- starting new things (like a job) especially- are so bitter-sweet for me...

if it continues to spread, i will have to do solumedrol...that will take alot out of me and make me a bit of a nut....but i dont want to have to quit this job before i really even get started...and wolf creek is in two months- i need my body back by then....i really want my body back by then

ive thought more then once that maybe, maybe im cheating myself out of something by taking my meds and staving off my physical changes...being in an episode always raises my awareness up a level-i have a much deeper understanding of the world and what is important when im so confused by my sensations...but truthfully, it takes away too much, to have problems like this, seperates me from the rest of the world...and all ive ever really wanted was to be in the world, connected to everyone...

Song of the day: gotta keep them seperated- the offspring

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...

dreaming and grass parking

i had the strangest dreams last night- i drove up jackie's driveway and saw my car and said "oh yeah, thats where i left it", and this teenager from my coffee shop, alyssa, was there, with her green hair and stoned look- i dont remember anything else,but it was odd....then i was trying to park my car on coventry but the bank parking lot was now grass with white stripes and i thought "wow, closing arabica killed this place!" and i walked to the old mcdonalds on lee (now a thai place), and jackie was telling this guy pete manista (who was a guy i cut classes and got high with in high school and then later was the manager at arabica on fairmount circle where i would sit, do homework and smoke cigarettes all day...he and i got in this huge fight one morning, and i ended up quitting so i wouldnt have to see him anymore- it will be five years on may 30)anyhow, pete was a cop in the dream and his walkie talkie thing kept going off, and jackie was telling him that he shouldnt take the ink cartridge out and then smoke pot out of plastic pens because it gives you ulcers on your lungs....whats with all this imagery, huh? cars, cigarettes, stoners...i guess it may be working with teens is finally bringing up some of my old stuff...

strange, strange night

Song of the day: i smoke alot- k's choice

MadTV - iRack

absolutely the best account i have heard so far....a must watch

Happy Birthday

chi and sarah (though yours is way over) and sally and tonya and jacob and kirsti (though i still know yours is a bit way off, i keep forgetting to do this so i include you now)Song of the day:

Buffy Sainte-Marie demonstrates the mouth bow

i want one!!
i was trying to learn how to play the jews harp, but i kept popping myself in the teeth with the metal piece in the center, but this bow situation would work much more for my advantage....

absenteeism

i have so much to say, but i felt pretty busy with the changes in my life the past month. today i have titled and started a number of posts, and over the nezst couple weeks will slowly write them up....both political, and continuoiing to watch my professional development....

part of me feels like starting this blog, my main point was to follow the transition from student to porofessional, and i believe i have finally had some success in the change, and wonder if its time to reevaluate my purpose for blogging

...i guess we will see

the most important libby trial fact

from aol news

Trial testimony made clear that President Bush secretly declassified a portion of the prewar intelligence estimate that Cheney quietly sent Libby to leak to Judith Miller of The New York Times in 2003 to rebut criticism by ex-ambassador Joseph Wilson. Bush, Cheney and Libby were the only three people in the government aware of the effort.

Pink Moon

so from what i understand, there will be a full eclipse of the moon tomorrow, and in parts of the world, they will get to see what is called the "red moon"....on the east coast, this will take place before the moon rises and so we see nothing here, where i live.

but i can feel this move of the moon in other ways...i let myself experience a man who previously had made me rather uncomfortable in an entirely new way today, and found a most interesting person that i want to know more about....

this song makes me think of the red moon coming, and now it also makes me think of him

Song of the day: pink moon- nick drake

swiss ?

talk about funny!!!

from yahoo news:

Swiss accidentally invade Liechtenstein Fri Mar 2, 8:51 AM ET

ZURICH, Switzerland - What began as a routine training exercise almost ended in an embarrassing diplomatic incident after a company of Swiss soldiers got lost at night and marched into neighboring Liechtenstein.

According to Swiss daily Blick, the 170 infantry soldiers wandered just over a mile across an unmarked border into the tiny principality early Thursday before realizing their mistake and turning back.

A spokesman for the Swiss army confirmed the story but said that there were unlikely to be any serious repercussions for the mistaken invasion.
"We've spoken to the authorities in Liechtenstein and it's not a problem," Daniel Reist told The Associated Press.

Officials in Liechtenstein also played down the incident.
Interior ministry spokesman Markus Amman said nobody in Liechtenstein had even noticed the soldiers, who were carrying assault rifles but no ammunition. "It's not like they stormed over here with attack helicopters or something," he said.

Liechtenstein, which has about 34,000 inhabitants and is slightly smaller than Washington DC, doesn't have an army.

Song of the day:

baby orangutan plays with tiger cub

ok, i love this story of tigers and orangutan cubs getting along and caring for each other, because it is a beautiful thing....but at the same time, i think there is truth to this video (and i really needed the laugh the surprise ending gave me)

kind of clueless

working with kids is a whole different cup of tea then adult psych (even though we did get a handful of teens)....i left the school a little early yesterday, a couple of the girls were so loud that i developed a migraine, and this one fifteen year old boy, a boy i very much like but also find a little manipulative....he never goes to class, and because hes likable, he gets away with a lot with the other social worker....anyhow, this boy says "why you always leavin so early?" and this girl goes, "why you all up in her bidness?"

iam very open though, and said "well, yesterday i had a training, today i need to go do some paper work at the main office (which was true), and i have another training tomorrow...but ____ poses a good question, why are you in my business?"

the other social worker says "becasue they notice when youre gone ms. molly, they are getting used to having you around, and guys,ms. molly is going to be here with us every day now"....

its uncomfortable for me to get involved in a new system, and i hadnt even thought past my own experience....its good to know that just my presence is having impact on these kids, and i just feel more excited to have my own case load to make our busy, crazy counseling center even more chaotic

i feel better...

so my anxiety has dropped ten degrees... almost two full weeks into working, a routine is beginning to happen, and while i have no clients fully on board yet, i am already in discussion with two parents....i finally got tired of waiting on the wolf creek thing, and two days after stating i would keep myself in the facilitators field until i had some sort of answer (only through email, but all the same) she informed me of the new weekend so i could come....all in all, i feel better


Song of the day: lurgee- radiohead

"i feel better, i feel better now youve gone
i got better, i got better, i got strong"