recovery episode III

hello to everyone!

its been a little over a month sice my last post and some good things are happening...physical and otherwise.

in november of 2009 i was lucky enough to see a special on ctv about some obscure doctor in italy of all places who, in his love for his wife decided to look outside the box at her disease...Multiple Sclerosis. he found something that neurologists have know since the begining...people wth "MS" (at this point i dont know what i should call this "disease" because its not really a disease but more like a symptom) have abnormal amount of IRON in the bbb (brain blood barrier). i was never once told in my 20+ years of living with this affliction, that there was iron in my brain...they knew and I WAS NEVER TOLD!!!

this is a very stressfull thing to have knowledge of....even now, 11 months after seeing the ctv special and having the procedure to fix that which was causing the issues in my body...the out look on life i have is that...i can trust NOBODY in a position of power and most of what we are told is no longer factual but biased towards money and keeping it flowing. now, i realize this is a really poor view to have but, if this can happen to MILLIONS of people world wide... because their affliction is making people billions and billions (9 billion anually and is expected to jump to 25 billion in the next 15 years) dont you think its a justified view? HELLYA!!

enough about the evils that surround whatever you like to call this affliction...in the first 8 weeks since having my angioplasti i have to say i had my doubts about the results i was seeing...i had seen all the videos of the great things that were happening to people globaly and i have to say that my own results were less than what i had seen. infact i was thinking that it was all in my head and i had a real problem telling people that it did anything at all...so i kept my mouth shut (just because i didnt get the results i wanted didnt mean other wouldnt, so why piss on hope?).

near the last weeek of august i spoke with someone that i hold in high regard...Jeanine baker. she told me to get on to the whole physio thing...to that point i had figured that i already knew how to walk so it should come back to me on its own...i will admit that Ginger told me in the begining that it helped her and i should seek a physio therapist...but i can be pig headed, stubborn, a knowitall, and in this case i was all of the above. so after speaking with jeanine and hearing the echo of gingers words in my head...i went seeking an outpatient program that jeanine said were covered by the government...and within (no joke) 5 minutes of junping online i was signed up to a place 7 minutes from my house.

i like results....good or bad i always learn something and i figure that physio should at the least tell me whether or not i am seeing anything. so on sept 9th 2010 at 3pm i made my way to see carolyn at out patient services in oshawa...unfortunatly i was a day early lmao... but she saw me anyway. we spoke on my history and i told her about my angio and she told me about another patient she has who went to mexico for an angio...we then base lined my walking and i went on my way with an apt for the following thursday...during the week i found some videos of the muscles used in walking...the muscles would turn red when being used. so i worked on what i considered my very week points.

the following thursday came and i showed up on the correct day at the correct time, everybody was happy about this! carolyn asked me to walk for her again and noticed that my right leg didnt scissor (legs crossing infront of the other) as much as when i was there a week earlier...i proceeded to tell her about  my muscle video and what i had been working on. we then worked on some stretches and then some excersises that i would do on a daily basis...most of which invoves my legs and  butocks. its now been 5 days and let me say, if it wasnt for the stiffness in my legs i would be walking...botox here i come!

i had started this trip hopeful and then i was uncertain... now, through listening to others and not myself i have come to realize that with hard work AND help from others, i am getting better. i am encouraged and hopeful!!

to those who still think its all smoke and mirrors / snake oil / junk science...i wish you all the best but, i am moving on without you! so dont let the door nob hit ya where the good Lord split ya!!

talk soon

Steve

recovery episode II

its been a month since i had my angio...its had its ups and its had its downs. i must admit i have sat here watching how it has been affecting other people and i am happy too see positive results for many. that said, my own recovery is different.

maybe its that i dont understand how to recover? today i learned that i CAN do sit ups...my muscles work very well i just have to remember how to use them. when i tried real hard it happened and it got easier after that. im very happy at this moment... because up to this point its been a frustrating ride.

as an example of how its been, my legs are lifting better...MUCH better...this has been a very welcomed improvement for sure...unlocking new skills on the 2 flights of stairs i have in my home. now the thing that has not recovered nearly as well (maybe not at all?) has been my balance and co-ordination...this i have discovered is a real problem. with my legs lifting better, it has given me a false impresion that i can walk without a cane. it always starts off well...leg lifts and moves forward fine enough but i cant seen to control where it lands...this poses a problem for me when it lands on my other foot and momentum keeps me moving forward!!

my mood swings are also still absent for the most part...EVERYBODY in the house is happy about this...EVERYBODY. so as you can imagine home life has been more easy going than usual...that takes stress off of me and makes me easier to deal with...this makes life better for jen and i have learned... a happy wife = a happy husband, and thats just good for everyone.

i am encouraged,

steve

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.


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**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.

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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!!

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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.

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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


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the real deal behind the kripple

i boast i am a superman and that its hard as hell to be me, but its not. its hard as hell to be jen...the unseen person behind my life. the one who watches me slowly erode in too less and less each day. the one who wakes up everyday to do everything for two people before doing everything for 4 children...the one who goes to work to come home exhausted THEN cooks and cleans the house. the one whos day off includes laundry, more house cleaning, driving the kids everywhere, driving kripple to wherever it is he goes...carrying the little sideload known as abby everywhere to boot. the one who takes unfounded yelling and trivial bickering as normal because she knows that her husband doesnt know why he is mad/pissed off/angry/sad/discouraged/hopeless/helpless all at the same time. the one who never has a second to herself because the whole household is resting on her shoulders.


i remember my jen when she was full of energy, laughing and smiling. i feel that i am crushing her with my load...she deserves so much more than this. she is the real SUPER...not me.


i love you jen, thank you for your love and dedication to this tired and bittered soul...its more than i deserve.

big air, big ramps and piss in my pants?

its friday...two days ago i went to a park in north whitby with jen and abby. it is a meetup group from the church (ALL woman - not a bad thing...if i were single!!!!)*** i have let this sit for way too long. it is now saturday and i have forgotten almost everything that happened at the park. i feel really crappy  about this because i was actually very excited about writing this particular blog...why?...well let me tell you...somebody in the group we were with said something about my blog...maybe a mention or something of that sort (which is cool in itself because that means someone is actually reading this stuff (< i have to say i was going to use the word shit in that spot but i am being cautious for some reason...jen tells me just to be myself but if people are reading then i owe it to them to be somewhat ...uh...clean?) and that makes this worth doing.)<< i got lost in all the bracketeering and now i have to remember where in the world i was going with all this...****HELLO PASTOR LAURA AND ALL THE MOMMIES FROM WEDNESDAY!!**** this freaking blog is like a real time insanity trip.

when we were at the park i did notice a bunch of skaters and bikers (not hells angels...though could you imagine HA at the park? it would be the best run park in all of durham thats for sure) really, they stole my attention...i was there to take pictures of abs and her friends but was whisked away to 1987 and the age of 16...i was a biker at heart though i skated as well so i rolled on over to the ramps and started to shoot...they were all cool with me taking pictures (especially when i attached a web address to it)and i sat there for a good 40 minutes just having fun and feeling young...>>> is my favorite picture of the day (that wasnt of jen or abs...but you knew that...right?) this kid just got HUGE freaking air almost every time... it was fun to watch and shoot...oh yeah, he was on a mountain bike too!***i would like to thank all the guys there who put up with my wheelchair and order barking...you guys were wicked***

<<< not to be out done by fun, my bladder had to come out and play too. so once i realized i was ready to take a whiz (by that time it was WAY too late, i just didnt know it...yet) i rolled towards jen. as i drew closer i unloaded my gear on one of the moms (brianas mom i think) and got a chill feeling that i needed to go a little more than i thought (i was starting to clue in to my dire situation). i yelled to jen that we NEEDED to get me to the throne NOW! and i headed towards the mens room...it was down hill...a BIG down hill, which was fine because i like danger and speed so a downhill crazy train was cool with me. now, jen is 5'4" so her strides are somewhat lacking in length so she takes longer to get places... like behind a 6'5" maniac in a wheelchair racing down a hill at a high rate of speed screaming "WOOHOO I GOTTA PEE!!" so when i arrived at the bottom of the hill, jen was nowhere to be found...with 2 huge ramps in front of me, i was forced to sit and wait for mrs.littlelegs (now i was totally aware of my error in judgement, not leaving for the throne earlier) with a bladder on the verge of meltdown. once we got up the ramps and in to the building...the bloody bogg was at the other end of what seemed like a 1/4 mile (400m for all you metric buffs out there) building....jen walked at what seemed like a kripples pace (;P) so i was panicking when she pushed me in to the EMPTY bathroom. if you have been following at all you will know i get leg lock from time to time...it was that time...so i am in the can with my pants undone in the chair but my legs have gone stiff as a board and wont bend...so picture steve, straight as a plank resting over the top of a wheelchair with his pants undone crotch to the wind...screaming "JEN!!!" at the top of his lungs (i am also worried about a potential pee fountain indecent)...finally after the 6 time screaming for her my baby came to the  rescue...sort of...she couldnt bend my knees!! jen had to pull me up with straight legs, kinda like Frankenstein. as we are struggling to get me up, a kid and his grandpa walk in to the bathroom to a big uh...well you can figure that out yourself...they left very quickly....i pee'd on myself, then in the urinal...


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parents are crazy...any wonder our kids are too?

have you ever taken on an event/project and then gotten killed by it in the opening minutes? that is what happened yesterday to jen and i...when we decided (ok..really... jen wanted to, i was sitting in the garage happy as a bug in a bag when i got the text about it) to go bowling with a 12 and 2 year old at "leisure lanes" in whitby.

i was chilling in the garage taking care of my body (i chanced into some kush...it kills all nasty feelings in my body...i thank God that He put this plant on the planet) when i the following text convo started...

"wanna  go bowling?"
"im feeling tired"
"too bad"
"why?"
"i wanted to go" <<< it was at this point the dad/crazy in me woke up and i responded...
"ok get my camera ready"

so i finished what i was doing...i felt good enough to think i was capable of going out (which i clearly wasnt...but the crazy in my life convinced me otherwise) and we climbed in to the van and headed out for the 15 minute drive through oshawa. it was very bright out (gotta love the vitimin D) and i played a bit with the camera...the windshield was dirty so they are a tad shitty but aside from that and the ginormous sun spot...i like them.


we arrived at "leisure lanes" (we have never been btw) and found a spot to park near the door...the front door presented the first problem...aside from all the smokers right in front of the door that we had to hack our way past (sometimes i think smokers do it on purpose... polluting whatever door they are standing near i mean) there were no ramps to be seen for my wheelchair...now i had to decide how much i love the people i was with. i guess i love them tonnes cause i left the chair in the van and grabbed my cane and headed for the front door (so you know, i am about 5 years past being able to walk effectively with a cane). the steps were...well...steps...big enough for me to have issues with but small enough that the pride in me will at least TRY to conquer them...and the pride won with major difficulty...but that was only hurdle #1 (i couldnt believe there were no handiman spots or ramps).

hurdle #2 :

we go in side to find that jen picked a league night to go bowling on, so there were only 4 available lanes to bowl on. that was cool because we got the last lane and here i thought our luck was about to change...UNTIL...he said it was lane 46. we were at lane 5 so i had to walk to the other end of the ally 41 lanes away. now for anyone else this is fine but for me i need assistance...my assistant was dealing with a hyper little girl and a 12year old nob. so it was slow going to say the least.

hurdle #3,4&5:

after arriving at lane 46 the fun really began, there were a set of 3 steps i had to go down to get to the actual lanes...my 12 year old decided he no longer wanted to play because everyone looked like leftovers from the 70's and there were no kids (jen paid for 2 games for 4 people) so while we fought with him to get his shoes on, abby decided she was going to play without us... she proceeded to gutter 4 balls, 3 on one side and one on the other. so when jake finally put the shoes on we had to get an attendant to clear our gutters...but at that point the stress has engulfed both jen and myself and we decided it wise that we cut our losses and pack it in after not even one complete frame.

the funniest:

when we decided to leave there was another door way at the end we were at...it was handiman accessible (thats a kind gesture for me to say because the ramp was as steep as everest...lots of brain power went in to its creation i could tell )...screw you life, your a dick! so nobody was killed or hurt in this outing but there were 2 tired and frustrated parents.

§TëVë™

kripple witnesses major accident

yesterday...one sec, i gotta go pee (go figure). steven is watching malcom in the middle and it keeps fighting for my attention.

ahem...

(the drive)i had an appointment with my MS doctor....hohol...dr hohol...ms expert and punctuality specialist (if she ever viewed (i used viewed because read didnt look right) my blog i think she would smile at my title for her). i enjoy my visits with her, i believe she genuinely cares about my heath...thats a good quality to have when dealing with a guy like me. we started of our appointment off with a laugh...i was an hour late for our very first appointment and maybe even the second (its always the traffic... oshawa to almost the lakeshore in toronto is brutal) so she set me on the straight and said "if you're late again, you can find another doctor." that angered me a lot but do you think i was ever late again? not for8 years....not until my last appointment but it really wasnt my fault...so we made sure we were very early this time. when she came out for the appointment before me, i made sure she was aware of my punctuality to which she said this..."steve, in the Ukraine there is a saying and it translates something like this...what died in the woods...and she smiled and i tried to defend myself and she just walked away...i am very fond of my doctor. after talking about how our kids think they invented the internet and how her kids wont let her have a facebook account and my pee fountain blog (she laughed too), we got to the exam and i am pretty much the same as i was 6 months ago...we will see her again in september.

jen and i got in the elevator with 3 other people...2 older ladies (one of which offered to sit on my lap but i cant remember what i said to get her to say that) and a lady maybe my age. after jokin about sitting in my lap the door opened (my back facing the door) and not being able to see i thought it prudent that i make a beeping noise as i reversed out and good thing...there was a crowed of people waiting for the elevator. as i came to a stop in the middle of the crowd i looked up and nobody was smiling..."tough crowd...i thought it was funny!"...the people started getting on the elevator and one woman whispered to me as she passed "i thought it was funny"...thank God!!! i was starting to think i was a freak....ok i know i am a freak...

by this time it was getting on to 11:00am and jen and i were getting hungry...i thought maybe a slice of za and jen was like "ok...i guess" which means i will go along with your ass because i dont want to think about it. i was happy she said yes...i wanted to go to "the big slice" at yonge and gerrard and so we headed north from queen...i havent been to the big slice since 89/90...the last time i was there i was in a stolen car and met a skin head girl who tried to bum a ride off us to which she was refused (wasnt my stolen car)...a week later she was on the news...they found her burned body in a warehouse(rip..we are sorry for not giving you a ride)...all of us were more than a little weirded out to say the least...BUT...they have great pizza slices. when jen asked what kind of slice we should get...i said cheese slices and she said "cheese?"...."uh huh, cheese"..."ohhhkay"...and in she went to get lunch. we then proceeded to dundas square to eat...i didnt get shit on by a seagull either. we spent some time at the intersection of dundas and yonge (dundas square) ..i have never seen a scramble intersection...i know what it is...but this was my first experience with one. it was very very fun. we would just wander around the intersection taking pictures...one time i just sat in the middle the whole time taking pics for a panorama shot, rushing to the side walk just as the light turned green (craig would have let me sit there as long as i needed directing traffic around me).

we also stopped by the "hard rock" because i wanted to see some guitars...i only saw 2, bobby dylans washburn (pictured) and robbie robertson's black american strat...both very nice guitars. i would love to have owned either one and they made me smile...but i soon ran outta things to look at AND i was starting to run out of steam so we decided we should start back to the van...jen needed an atm so she left me on the east side of yonge and went in to the eaton centre in search of cash. while out side i filmed my video ending witnessed a horrible collision on the sidewalk..a blind guy walking in the middle of the sidewalk crashed in to a guy with one leg in a wheelchair going the opposite way!! the guy in the chair just looked at me with a wtf? look on his face and the blind guy had no clue what the heck just happened...i think i pee'd a little.**taken from my photomentary** after that entertaining uh...side show...i got a text to meet her at queen and yonge...and off i rolled to meet my lover...

§TëVë™

prep work for trouble

today i am going to see my MS doctor downtown...i am not a fan of downtown. people are rude and pushy and everything is crowded and expensive. i am taking all my gear for pictures and even a video maybe....if all goes well i will get in to some trouble while im there! look out st. mikes §TëVë™ is in the house!!

MS + cold = bad... MS + cold + fever = night from hell

yesterday i started getting a cold...that is never a good thing. while the runny nose is annoying and the plugged nose voice is funny, i get dragged out and tired... still its not as bad as it could get. jen just brought me fresh blueberries and strawberries, a cup of home-brew coffee and 2 slices of rye with cheddar....yes, thats how bad my night was...fresh fruit always makes me happy :)


when i went to bed with abs at 9pm-ish i could tell the fever was coming. it usually comes while i sleep...the fever that is...dirty minded people....last night didnt disappoint. at 1pm-ish woke up and had to pee...not a big deal when i dont have a fever...but i HAD a fever...so the fun started as soon as i tried to get out of bed...just reviewing my post and i didnt tell you why a fever is bad... when my internal body temperature rises because of exercise or say a FEVER all my energy disappears and i lose most of my ability to control my body.


getting out of bed...how hard can it be, you say? let me tell you how hard...(again, get your minds out of my gutter!) you know when your tired and you stretch your arms and legs out to there max length and they can kinda lock in the stretch position for a split second...well my legs lock and my knees wont bend when i have a fever...try getting out of a bed like that...its not easy but then try WALKING!!


so i am tired sick AND have a fever...its dark, i have to pee really bad (a whole different story as to why i wait so long to go...maybe later) and i cant bend my knees so im walking in a half ass Frankenstein type way but worse is i cant lift my feet so they drag and catch on everything. it was touch and go getting to the bathroom door but the fall didnt happen till i tried to sit on the throne (standing is not an option anymore). instead of landing on the seat one knee buckled and i fell in to the tub...crotch blowing in the wind...and since i was in a crisis my bladder started to let go and created a piss fountain...all when i was using my hands to keep from falling deeper in to the tub. not to be out done by the tub the toilet proved to be just a big an ass hole as said tub...i managed to kill the fountain and pull myself out of the tub and sit on the toilet but my legs wouldnt pull apart so my crotch wasnt pointed in to the toilet...can you say hello fountain part 2? by the time a got everything situated i was out of pee...as was evident by the yellow puddle around me and my new yellow clothes....i cleaned up with lots of effort and went back to bed.


2:30 and i woke for round 2...i figured that the same thing would happen if i went to the bathroom so i opted for the easier way or so i thought...my pee bottle! again i had leg lock and i couldnt bend my knees OR pull my legs apart so i couldnt fit the bottle properly and i had fountain part 3 aimed at the wall and my clothes from yesterday plus i couldnt empty completly so i had to go to the bathroom anyway!!!


lots of fun living this life...there is never a dull moment or a second of dignity anymore. as funny as i make it sound for you to read, it makes me want to cry.


§TëVë™

my head hurts and thats my story

the sun is shining on my window. the window at the very top of my tallest wall. its a beautiful window with many different colours and textures. blazing reds and bottomless blues...grassy greens and lemon yellows fitting together in chaotic togetherness. each piece adding its wonderful uniqueness to the light that it is given to celebrate. then the wicked troll came and kicked my window in...what a jerk.

so we went to the mall...i dont have much use for the mall but its better than sitting home...alone...all by myself....**see side note...so after the boys went to school jen abs and myself all got in the van (ok i kinda fell in to the van) and headed to the x-ray clinic to pick up some...you guessed it...cd's!(that had x-ray images on them)

im not feeling this story...i have so much shit going on in my life right now its unreal...it makes it hard to sound positive or even be funny. im sorry for all the half ass thoughts but this is all i can muster today...just total randomness

heart burn really burns...no joke.

<<< would you wear these colours??

**i have to say... man am i tired i can hardly keep my eyes open and its only 1:17 in the afternoon...now i just get a call from jacob's school and he is being a freak. sometimes i wonder what i did to have all this happen to me...

random, purge, remember, GET OUT!!!!

posture...if you knew what was going through my head you would run...am i tired or am i lazy...i still like sesame street...do you really want me to do that?....its getting light outside at 6:10am...if it wasn't for me i would be perfect...but showers are REALLY dangerous...exploiting myself for small gains is ok..i know your 16, thats why you need a size 12 in the ass...everything is legal as long as you don't get caught...honesty is not over rated...life isn't fair, its just worth it...

so i have deleted american politics from my email. things are looking bleak for the Yankees and it is bringing me down so i need to purge it from my mind and fill the gap with something else....but that is a problem. being immobile has some very difficult problems attached to it...like its difficult to move and get around (duh) so doing anything requires some serious effort and i usually get discouraged before i ever get my shoes on...i feel bad for jen because she cant really do anything with me because i change my mind often and that makes me hard to predict...not easy for planning an outing.

this is me 25 years ago...doing what i loved. back then it was all easy but little did i know that 3 years later i would be diagnosed with MS...that picture was taken out back of "vogue bra"... yepper the best bmx jump was at the back of a bra factory on gordon baker rd in scarborough there was also a make shift bmx track 5 minutes away in a field out back of batta shoes on victoria park...shoes, bras and bmx...oh the life.

i have the desire to go out and do something today...i dont know what but i will be going out somewhere with my camera to take pictures and if im lucky i will get in to some mischief...i will report back later today with the results of my outing!!

§TëVë™

the cocky kripple

hello from over here! im thankful for all that i have...good and bad.....

the good:

i have a beautiful daughter and a beautiful wife...3 boys who are a joyful pain in my ass...mom and dad...craig and marc....the ZZ discography...good friends...KUSH (my taste in meds is a tad expensive but its my life and my only real indulgance)...a computer that kinda works...memories that i can still remember...heat in the winter...a clean garage...the blues and loud wide open tube amps...people who remember what i was like and are still willing to deal with me even though i have become public asshole #1...that i have a monthly cheque from cpp...that my rent is paid and i dont live in the street...i still have a lot of my hair...i can still have sex...i can still find someone willing to have sex (thanks SO MUCH jenna!!)...i had 18 years of life with out being afflicted....jen has a job...

the bad:

thankful for my MS because: <<< this is really the only bad thing in my life or maybe everything else just pales in comparison?

it has taught me that life isnt all about me (though that doesnt stop me from being in the centre of everything) and that its definitely NOT fair but its still the best fucking gift you're EVER going to get so run like hell with the ball and dont ever stop to look back...it has taught me compassion because i know what its like to suffer and have what feels like every ounce of shit in the world land on me all at once...it has taught me material possessions mean nothing in the long run or even in the short term...i have a greater sense of self worth but also self loathing....it has made me A FUCKING SUPER HERO!!! try my body on for 10 seconds and you will be screaming to get out, its my 24/7/365 job that i never get a break from... ever! you can call me SUPERMAN!!!!


§TëVë™

lost thoughts and insanity...§TëVë™ in a nutshell?

this has started with a title that it may not finish with...already i have lost my train of thought and i have no idea where i was going with it. abs brought an unopened box of honey (hunny if your a pooh fan...its on the tv...leave me alone) nut cheerios to me. i dont even know where any of this is going...everything is distracting me and thats a hard thing to overcome but i will try.

^ ^ ^ ^ i apologies for the above...

i want to do something. i am tired of doing nothing...maybe its the feeling that i cant do anything thats the hardest thing to deal with (that coupled with the ability jacob has for talking to me at times when i dont want to be talked to....like now!). i have started doing this blog and facebook in an effort to keep myself from going off the deep end...which everyone including my wife and parents think i already am.

it is not easy being the one people think is a tad off...i have become very straight forward...i have lost a little bit of my ...well lets just say i can be kind of coarse.  my views are never easily swayed and my conversations can be very heated resulting in little bitch sessions where i actually get my ass up and leave the room. jen has a picture somewhere of a trip where it happened (im sure she will post it when she reads this...i know i can count on that). wow...how did i get to this point? i went from trying to stay sane to proving that i AM insane...who saw that coming?

back to what ever it was i was saying....uh....right...this blog is part of me doing something. my photomentary thing has morphed into more of a story with a few pictures...but i am having fun with it. i want to expand a bit more with it...get a little bit of group participation happening (not that kind of group participation you dirty ol'.....though that kind of thing could be arranged with the right... geez lmao). i need things to do, ideas to get me out and to take pictures and vids and then put it all together in one way or another for presentation. maybe i should get suggestions or put something up for a vote...i dunno...you?

this was the original title..."unpredictability and the relentless"

sNOw

 well snow is supposed to get here today...lots. thats what i read yesterday. today it seems like snow may not arrive...THANK GOD!!!! while snow looks amazing there is very little else appealing about it...its worst quality is cold. snow means the absence of summer and who in their right mind wants that??? i am a pro summer kind of guy...long days and warm nights...always being outside with family and friends...its the REAL reason to drink beer...windows open and music on...cruising in the car...GOING TO THE BEACH!!...

SUMMER HURRY UP AND GET HERE!!!! I MISS YOU SOOOO MUCH!!

Getting out!!

yesterday,

we had breakfast at eggs-crepes...predictable...magic wake up w/ chocolate uh...sauce i guess, 3 eggs over medium...home fries with bacon and coffee, and a bowl of mixed berries with borrowed chocolate from the wake up. even the part-timers know the order and i like that. after breakfast it was already decided that we were going out to do SOMETHING...jen mentioned IKEA but i would never go there...i do not like IKEA...

jen got on the 401 and we went to.... while on the way to .... i got the idea to text craig, who only lives 30min from....it was agreed that he would come to...and pick me up and we would hangout somewhere in Toronto for the afternoon. so craig arrived about 20 or so minutes after jen left, after our hugs and hellos it was decided that we needed to eat. craig and i like to break bread together as often as we see each other...its a bonding event and its proper since we tend to get in to DEEP conversations when we get together (i wonder why?), and you just cant do that on an empty stomach.

it was decided that we would check out IKEA's cafe...while the food looked good and the prices were cheap as you can see >>>
the staff on hand did not like the fact that i had a video camera and a dslr and made a point of telling me to shut them down. we were forced to re-evaluate our eating arrangement. we then went on a high speed race through ikea...after searching for what felt like days we finally found the exit and headed for fairview mall.

we took the 401 to the 404 and exited at sheppard. we had fun honking at people...people dont like getting honked at and i noticed the first response (even if they didnt know who was honking) was to flip the finger up...we rolled in to the parking lot at around 1pm...sparked one up and relaxed. after about 30 minutes we dragged the wheelchair out of the trunk and rolled in to the mall.

here is where memories are uh...a bit fuzzy (again i wonder why?) i recall getting in trouble from a REAL REAL REAL hot chick in the apple store...>>>>
i think she said something about copyrights or something like that but i was just overwhelmed by THC and the smell of perfume...the nice ass was where i just said "uh...ok...i will just exploit the shit out of the pictures i already took." she seemed ok with that...so we sat and watched her work for a few minutes then remembered we were hungry...for FOOD...get your mind out of my gutter!! off we went to the food court which i havent seen in 8 years...since working at BMO. the problem with food courts for me is WAY too many choices...but for craig thats where the fun begins...


we took the elevator to the lower level... not saying that craig didnt try to take me down the stairs...many times craig took liberties he thought were funnier than those around us...running towards the stairs at full speed then letting me go 30 feet before the edge of the stairs...flying solo at 15kph in the wheelchair is kinda fun....watching people faces as i come screaming towards the stairs at a high rate of speed is absolutely hilarious, then craig would grab me 5 feet before the edge and swerve me out of harms way!! scary way to get our kicks but man it was fun...ask me again after i go down the stairs head first LOL!!! oh yeah... the food court...

<< this is the table where we ate ...its at face level for me. its the bar type ledge with tall chairs. the regular seating didn't accommodate me at all, so we improvised. food selection is always fun with craig because we get to check out every vendor...talk with the ones who will talk, eat samples from the ones who will give them (typical grilling type places with pricey food) then settle on splitting a tuna sub from mr.sub(it was the best damn sub i have had in a while)...  the bourbon grill shot us dirty looks as we ate.

at this point i was close to exhausted so we decided that we would skip going to the STC and head to my place and get some cheap wine and some wendys, fire up the vaporizer and watch "pineapple express"...and thats what we did...8:30 we opened the garage door and saw that craigs car was covered in...UHHHHH! SNOW!!!...the last thing craig said befre he left on his 11/2 journy home was..."one love bredrin...no worries i got two new snows on the front...." i told him have fun and the e-brake is his friend in the snow...he then departed.

"rusty cage"

today i embark on a journy to media hell....i have a twitter account, facebook account & a blogger account. all this is an effort to get me out and about and connecting with people...i havent done that in a long long time. i have given myself a life sentence in the house with no chance of parole...**"i am gonna break out of my cage....and run."


** soundgarden.

8 months later...

i have been doing other stuff to pass my time...on facebook mostly.

here is the link to my photomentary: http://www.facebook.com/group.php?gid=329585827017