post treatment update #1

so i have been quiet...i have have been going through a hurricane of emotions and strange body events since i last wrote and i have been tired...always tired. as i try to sort out all of the stuff i am going through i have been plagued with negativity towards the results of my angioplasty. i know that i tried to not think about what might happen and i knew going in that i may feel nothing at all...but in my heart i thought that this was going to be big for me. the procedure yielded no immediate results and i was quickly deflated...

i started looking for any little improvement...i was starting to feel defeated not just deflated, checking for finger movements and toe movements but nothing was getting better and i felt like trash. then i started to lift my left leg better...no matter how i was feeling in the rest of my body, my left leg was always lifting better. my moodiness has also mellowed pretty dramatically and so i have started looking for bigger picture improvements like arm strength and steadiness instead of finger and toe movements...the first things to go wont be the first things to comeback...they will likely be the last things i recover. so i am happy with the bigger things that i see and i also take heart knowing that the other little things will be following at some point.

i feel best in the morning right after breakfast and i fade somewhat as the day goes on. i have decided that my pot habit left over from my pretreatment days is definitely a huge hindrance in my recovery and is probably the sole factor in me not seeing the better result...so i now am faced with another challenge...my own fault...still another challenge.

talk to you all in a week!!

for what its worth

i like to think i have things under control....the last 12 hrs have showed me that i clearly DO NOT. i should be getting excited about getting my angioplasti done but i stress about it and getting everything in order in my head is really starting to stretch my sanity. my children cant or wont treat eachother with any kind of civility, so there is ALWAYS tension in the house. the last few weeks my physical being has been absolutly terrible...i started to lose my legs last week...from the knees down its like a tree stump...no feeling in my toes and feet, the further up my leg it lessens somewhat but its like walking on peglegs...now i am faced with the blistering heat which has utterly descimated me, i can hardly keep myself on the couch cause i have zero muscle control in my torso.

if thats not enough (and really is it ever enough?) i managed to pull my physical self together enough to go pick jen and abs up from the airport. the drive proved to much...for the van. on the 401 at leslie the head gaskets  blew causing the van to stop. jen was going to take a cab home (approx $200 my dad was going to cover so i didnt have to drive) but i couldnt let him spend that kind of cash...in the end it cost us $250 and some serious stress last night and now today as i try and figure out how the hell i am going to get another car to replace this one.

isnt it funny? all the bullshit that life throws at us, and we take it...go out of our minds trying to keep everything above water and scratch out an existance. some of us do well and float with ease, some of us have had a hole in the boat since birth and cant bail ourselves out no matter how hard we try.

lastly...i would like to thank mary, tyler, brian, shannon, rachelle, sheryl and bob, natalie, charmaine. patricia, all the dunns, m & d and everyone that supported me in raising funds and donations. i couldnt have donne this without your help.

my biggest thank you goes out to jen my lover and best friend in the world. you are the glue that kept it all together.

SILENT AUCTIONS AND LONG DISTANCE RUNNING

its been a while since i have typed anything constructive...or so it feels. i have been working with a dear friend on my fund raising efforts...its taking its toll on my brain power ( i have only made one flyer...) and i feel so tired its like i cant recoup any energy...im sluggish...anyhow...

THIS WEEKEND...CHARMAINE BOUGHTON WILL RUN 87KM AROUND LAKE MUSKOKA...to raise funds for me to go to NY to have my veins scanned for CCSVI and then have the liberation treatment performed. this is a huge thing to undertake and all my love and blue sky thoughts are with her as she runs !!! please donate TODAY!!

we are having a fund raiser/BBQ on June 26, 2010 from 5pm to 10pm @ Harmony Hall in Oshawa...there will be a silent auction with all sorts of cool stuff from "american eagle" "roots"and others, there will be a 50/50 draw...food cooked on a bbq, penny drive and face painting (for the kids or silly adults like my wife), coin toss (for a big bottle o' booze), it will be a licensed event so there will be beer AND pop to go with the food cooked on the bbq...i am hoping to have the mayor of oshawa and my mp Colin Carrie to come by...EVERYONE IS WELCOME TO SWING BY!!

would you fight if it were you in my shoes?

so with 7 weeks to go and a TONNE of money to raise/beg/borrow/steal i am officially STRESSED OUT!!! i have been reading and viewing testimonials from MS'rs who have had the liberation procedure done and i am very encouraged by the results. it looks like the effects go beyond what people had expected...and as time goes on the healing continue's and improvements are recognize regularly. this is exciting for me to witness... especially with my turn coming at a rapid pace.

speaking about the rapid pace at which my date is approaching...i must EMPHASIZE the need for help with money. jen and i need help with fund raising...now i know i have a bunch of musician friends that i have been in bands with and who were all very talented (more than me anyway) and maybe this is my direct plea to you guys...can we do some sort of benefit concert with the musicians from both bands? i know you guys know who you are and maybe im being presumptuous about your help but I REALLY NEED IT.

there is coming a time when my health will be returned to me and i will be able to start helping others with their own fight...i am looking forward to taking on our government in the struggle to bring CCSVI in to the mainstream and ridding our country of MS. it really makes no sense why they are keeping us from a cure...everyone wants to find a cure until its found and it not what they were hoping for, which seems to be the case with CCSVI. I ALSO DONT UNDERSTAND HOW THE PUBLIC CAN BE HAPPY WITH SPENDING $139 MILLION A YEAR (HALF OF WHICH IS SPENT ON DRUGS THAT ARE PROVEN TO DO ABSOLUTELY NOTHING) ON A DISEASE THAT COULD BE CURED FOR $124 MILLION...that free's up $139 million that could be spent on something else...like children living in poverty in Canada. our government is full of mentally deranged individuals dont you think? HOW GREAT IS OUR HEALTHCARE SYSTEM? EVERYONE KNOCKS THE AMERICANS FOR THEIR HEALTHCARE SYSTEM...funny that THEY  are the ones fixing me while canada and its SUPERIOR healthcare sit on their asses and let me go else where to spend money INSTEAD of keeping it here.

may 26, 2010 is world MS day...i ask you join the following group http://www.facebook.com/?ref=home#!/group.php?gid=126466010700967 and help us in our email blitz of the canadian MP's...lets show them who they work for!!!

EMERGENCY!! I AM RUNNING OUT OF TIME!!

well...i have good news!!! in 3-4 weeks i have a scheduled appointment for my liberation from MULTIPLE SCLEROSIS (2 1/2 months sooner than i planned on)!!!!

well... i have BAD news. in 3-4 weeks i need to find, raise, beg, borrow (too slow to steal), $10000 or this is a no go.

i am beside myself, it was hard enough for me to ask for help but now i need to be expedient...but im one guy and im at a total loss. i have never done fund raising nor do i think i have the capability to do much. if anyone is a whip with getting stuff like this done...I NEED YOUR HELP! i will put in the time but im clueless as to what to actually do. i am feeling overwhelmed by this and it kinda krippling my functionality (stress is evil to me)...please some one give me a hand?

oh yeah...if you can help with some sort of donation in the monetary sense....that helps too!

anyone interested in giving me a hand? i can be reached at krippleone@yahoo.com or text me @ 905 926 5947

TIME IS VERY SHORT...PLEASE PLEASE HELP ME OUT!!

thanks for taking the time to read my begging.

Steve

**UPDATE**

THE DATE FOR MY SCAN/OPERATION IS JULY 14 2010 8:00 AM!!

if i MOOOO, am i really a cow?

today is the day of the ccsvi rallies across canada...i had arranged 2 rides downtown...i figured a primary ride and a back up should get me where i need to go. WRONG!!! my back up ride sent me as text last night saying she feels under the weaher and some other stuff and thats cool cause i refuse to put people out or force them to do things. my main ride i havent heard from which probably means i wont see him either. that leaves me 2 choices....1) stay my ass at home  or  2) drive jen to work then come home, get ready and drive my own hump to the rally. jen is telling me she only likes option #1 and that im scary to drive with and cant do anything without help (like unloading/loading the wheel chair from the van). so here on the big day i am taking the hard road downtown and doing this alone.

as i sit here proud of my independence i am starting to wonder about what happens (not if but) when i have to go pee...i have a bottle to use but...you know...i will be outside in font of people...i know i know like that will bother me and it wouldnt if i had jen with me but i wont so ya im a bit sketchy...and what if its raining? does it still happen? its raining as i type but it says sunny till this evening...REGARDLESS of what happens i will be filming the days events and i shall report back to you soon,

btw...the "college for physicians and surgeons" has killed most ccsvi testing in canada, for no good reason. and im on the waiting list in poland for the "liberation treatment" but its booked till 2012 so in a year and a half i can get fixed. thank you so much canada its nice to know you have my back. talk soon peeps!!! wish my krippled ass luck...I AM GOING TO NEED IT!.... MOOOOOOO! i know im not a cow but i needed a catchy title so i HAD to throw this in.


§TëVë™

**update** my original ride pulled through @ 7:25am i got the call he would be meeting me at vic park @ 401....jen can breathe!!!

no funnies...just a look in to my heart and a plea for help.

i just made my appointment...im getting my scans done for ccsvi on Aug 10, 2010. i should be happy and excited but it makes me scared and sick to my stomach. i dont know why...my thoughts and mental functions are starting to go strange...i am reading words and not getting the same meaning as normal people...my mind is a fog and my head feels heavy...nothing makes sense anymore. i want to hit something and i would damn it, if i had the strength....im so angry and full of rage and im incapable of venting it. this is killing me inside, its like i dont know who i am anymore...i feel so fake. i want to run away but i cant cause my damn legs DO NOT WORK!!!!!!!!

i can now officially STRESS OUT about finding $1250 to pay for the scans by aug 10 not to mention hotel and food expenses...oh and fuel.... it all seems hopeless. now here is where i totally leave my comfort zone and do something that goes against all that i am...

i need help my friends and the last thing i ever want to do is ask for help but...my health is getting worse but there is a chance that i have a curable condition called "chronic cerebrospinal venous insufficiency" or CCSVI. this condition causes the symptoms know as "multiple sclerosis" and is evident in 80% of people with those symptoms. i would like to find out if i am in the 80% that have ccsvi, this would set in motion the wheels toward getting the "liberation treatment". the liberation treatment is where the ms is at least stopped and most people regain balance, vision and the ability to recoup their energy quickly along with losing the soul killing spasms that keep me awake and wanting to cut my damn legs off.

im not asking for money. i dont know what i am asking for....maybe help by whatever means you may have available to you...time, talent, ideas...whatever you want to lend im open because i have 3 months to get this done. thanks for reading my plea and for any help you may lend.

§TëVë™

pour racing fuel on me and light the match!!

there are many things that really piss me off...one example is slash's new cd...its really good and as i sit and listen to it and really get lost in the sound of the amps, the touch he has on the strings, the chord progressions and raw emotion of the playing, the anger starts to grow...i can feel the rage build and it gets me to the point of tears. tears for a path that i really enjoyed in my life (even though my entire guitar playing career was plagued by MS) playing with volume and string gauge... the power trip you would get by using drop D tuning...the chug of the e/d string when muted by your palm...the thousands of fans cheering as you tear a wicked solo from the air (or a hundred in my case). my past...better left there in most cases but without it i am not steve and with it i am tortured...a rock and a hard place? how about repeatedly beaten by a rock till i dont want to breathe any more.

now i want to address someone...a friend of mine in the fight against this thing called MS recently had "the liberation treatment" done on her vanes in poland. i have been waiting patiently for her review of the results and how she has progressed over the last week and a bit...i want to shake this damned sickness outta my life and body...more than most things in my life but i need some info first before i commit financial suicide...so if you are the person i am talking about (here is a hint...GINGER), drop me a brief note would ya? im dying here!!!

i havent really been out in the last week to give you pictures and stuff...i was out on monday for a picnic but my camera battery was left mysteriously dead...(not really a mystery...some nob left it plugged into the computer and didnt shut the power off..(that nob was me :D) and i didnt notice till we got to the lake. before that we went to port perry and i forgot so i didnt write you anything...not like it was that interesting for writing but i took pics regardless and maybe i will post some of them up for you...or not...but you never know what might drop outta my head at any given time so keep an eye out...but i will probably send out a few group messages letting you know...by the way if you get sick of my mails let me know and i will send you double the notices...so i put one in for you...below is a panorama of the scugog beach front (did you know that dirt bag is one word...dirtbag...i checked the spelling of scugog and dirtbag was the first suggestion...now it says dirtbag is spelled wrong and that it should be either dirt-bag or dirt bag both of which have no red line under them...strange?)

i am wrapping this up for now...nascar, moto gp and wsbk are all on this weekend so i can at least pretend to smell the C12...forget the rubber pucks and ice...if it doesnt go 180mph your just playing with kids!!

§TëVë™

FUNKY COLD MEDINA, YOU KNOW THIS....MAN!!! 


its the grain of sand that causes the most agony...

when the wind at your back blows you over

and today i signed up for round two of  "mommies in the park". last time i was out with them i had fun (despite peeing my pants) so i figured i would giver a second go. what could go wrong on such a beautiful morning?

lately i have been regaining a lot of movement in my left leg...i have no clue why, but i can lift it with relative ease up to about a foot off the ground. this new found control has made getting up and down the stairs just a pain in my ass...as opposed to a royal pain in my ass. so i was happy to exploit my new found mobility in a real world scenario (because to this point i have been limited to the house) when jen asked if i would like to go. so i had breakfast...a banana(cut in to pieces so i can eat it with a fork(its easier, leave me alone)), 2 slices of rye toast with cheddar cheese and a coffee brewed by the best coffee maker in the world...can you SEE where this is headed? we went downstairs to get ready and i took this opportunity to go drain my bladder (hmmm) after which we departed for "mommies in the park".

we left some time after 9am which i thought peculiar but jen stated "well, it starts at 9:30" and what do i know, im just a tag-a-long right? we took rosland west to past thickson to a little park on the south side. as we drove along the little side street i noticed an empty parking lot ( this is a bad sign...being the first one means waiting for people you know to show up...i dont know anybody really). because i have my new mobility i decided to walk and forgo the chair...we have a video of me walking with my cane and even jumping. i was good for about 25 minutes then the sun started to get hotter...not even hotter but being in the direct sun and i started to lose my energy. when the first fall happened my ego was still in tact (not many people in the park yet) so i kept on going but decided to sit on a bench to recoup some energy...but i was in direct sun light so it really didnt help all that much. i did happen to notice however that i was starting to feel an urge to drain...

i sat for a while on the bench watching the mommies playing with the kids for 10 or so minutes, but i knew i needed to get out of the sun or i was doomed. i decided that sitting in the van which provides shade would be best in this situation so i stood up and started to drag myself to the van...thats when my left leg buckled and i dropped to the ground like a rock...flat on my back...this time however the park was quite full and there were spectators for my halftime wipe out...some mommies asked if i needed help...but you see i am a proud man and i DO NOT  like asking for help, so i struggled to get up myself but by this time i was sooo aggravated by my crashes it was way more difficult than i thought and i used my remaining energy to get up and to the van where i remained for 15 minutes with a now ripe bladder. so i texted jen that i needed to go pee and thats when i noticed there were no public washrooms and that we were going to have to take my ass home from whitby to oshawa. i was not impressed.

**this is a link to the video i made. i wasnt finished putting it together when i wrote the blog so i had no idea what to expect when i viewed the footage. it was very revealing to me about how much my attitude can change in the course of 40 minutes. it also shows how funny i make most circumstances seem in writing that when you see my face it says otherwise...im sorry i didnt hide my defeat very well but shit happens i guess...its a funny watch anyway so please enjoy. KING OF THE WORLD! even if its only for a second.

§TëVë™

the male sex organ doesnt really fit...

many things upset my composure. as i type i am bitching to jen about the what seems like 10 different sets of cordless phones we have in our house....you see...after i typed the opening sentence, somebody called the house and a chaotic array of silly generic preprogrammed rings pulled my attention away from my line of thought...and thats aggravating and it set the calm off course. big breath...

i would love to say the big breath helped but it did not...imagination movers is on and im distracted by the music...not that the music is bad...not at all...its really good in fact. many different genres all played very well...and its a kids show so its perfectly rated for my ears... unoffensive and positive...not that i dont like more adult (not that kind...) entertainment because i do. just the other day i watched "gone in 60 seconds" (the remake) and "the dark knight". i like "gone" because its full of nice cars (the 428 high compression engine at the end made me rewind a few times) and i like nick cage. some people dont like him but i do...matchstick men was the first movie i saw with him and he was excellent. dark knight was just that...dark. while the the movie was entertaining i came away kinda...meh...i never find anything special in movies that get hyped up beyond what it is.

see, here i am at paragraph 3 and i have lost my way completely...i had wanted to talk about something a bit more serious but how can i after letting you read all thats above...and im not starting over...i have invested WAY too many key strokes to turn back now. so maybe i have just wasted 2 minutes of your time but you could look at it this way...i just schooled you in the inner work flow of my brain and as you can see its kinda....(i looked to jen for guidance on what word i could use to best describe my my brain...so i asked her the first word that pops in her head when i say "steves brain" she smirked and said "penis"...i dont know what to think of that and i dont think it really fits the end but i will try)..i just schooled you in the inner work flow of my brain and as you can see its kinda penis. well there you have it...dont say i didnt try.... :P


§TëVë™