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™
Thursday, April 29, 2010
Friday, April 9, 2010
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™
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...
its the grain of sand that causes the most agony...
Thursday, April 1, 2010
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™
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™
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