Tuesday, February 19, 2013

The Assholes and the damage i've done

well, it has been tough on me... which means it been tough on my family. i never really take in to consideration how my health affects them (probably because im to involved with myself to notice or care) and this is causing real big problems in the family unit.

i have developed a "me versus them" complex that is destroying any unity we may have had...(i will be using "i" and "me" a lot in this post probably because i can only give my point of view (which could be total biased and wrong)) <== nice double bracket huh? i have always been the dominant person in my family, giving orders (always in the best intrests of the family) and always needing to be right. i know that isnt right but i cant seem to stop...what is really fucking me up now is my confinement to the wheelchair. people just dont give a shit to listen to what i have to say...not that i think i was a tyrant (i am sure EVERYONE will disagree) but it seems i perceive any respect there was is gone and i am making life hell trying to keep it.


a major problem is coming from my sons, all of whom are entering or in manhood...i will give a general account of things then single out the biggest problem. they all have a lack of respect for me (and jen for that matter) and being a guy who at most times of his life had big respect for his dad, this is not an acceptable thing. i cant help but feel they are taking advantage of the fact there is no physically able male presence in the home anymore and yes i realize they are becoming men but that is no excuse fore disrespect.


my biggest issues are coming from my youngest son. he seems to have the biggest issues with me out of the three. (geez my hands are having great difficulty typing) i argue and fight with this kid non stop...he has no issues telling me to shut and go fuck myself and that drives me to the point of murder...and he is the one that always benifits from being in to the same things i was (BMX and guitars). it drives me insane that i get treated this way by the kid i go out of my way to give new guitars and expensive bikes to because i know how it sucks to have substandard equipment...maybe i m an idiot? not maybe...

i cannot control anything and i scares me to give control of my life to anyone who isnt me...yesterday i freaked out thinking about my future and where i am heading and to what miserable fucking end. these are pictures of the kids dumpy room he refuses to keep clean

Saturday, February 9, 2013

They call me crazy legs?

sometimes (though it sure as hell feels like all the time), life kicks my balls. it can be a sneak attack or i can see it coming or it can be a combination of both as was the case yesterday/last night. you see i have an issue with my legs...they dont work. my brain tells them to do things but the just dont, i think if that was all i could live with it BUT...they do have their own brain (or so it would seem to me). the legs i own will shake like fucking crazy AND fast all by themselves...i dont get how they do it and it pisses me of that they are capable of this kind of movement on their own but when i try to make them do it, i get the old fuck you steve we dont listen to you. that is only the start of the issues i have with these pricks i call my legs....when the urge hits them and they decide to go dancing it is terrible for the one who doesnt want to dance (that would be me). you see they like dancing at anytime of the day...and during the day i can sort of deal with it...its at night though when they like to dance the most, at bed time. the way they go about it is really messed up too, they(the powers that control this event are "they") wait till all is quiet then they pick a muscle in my foot and upper thigh and then very slowly increase the voltage to full strength on the nerve that connects the two of them...i feel this uncontrollable tingle grow until my leg shakes so violently the entire bed feels like a magic fingers massage. it lasts about 10 seconds and then stops...and this happens hundreds of times per night no matter the position i am in.

now, this was happening last night...at about 1:30am (i have been dealing with this since 9pmish and i havent slept yet) when abby comes to my bedroom door and scares the shit out of me(i know this means i am about to get even more uncomfortable).

abby: mommy?
(jen has been in full snore mode for hours...dont ask me how with the bed shaking like crazy)
mom: *no answer*
abby: MOMMY?
mom: *still no answer*
abby: grrrrr
dad: yes girlie
abby: i had a bad dream

this is where the conversation ends and she is already climbing in to my spot...ya, she sleeps draped over me on my side leaving jen to her half of the bed. so here i am sharing a spot with the girl while my leg is doing the twist with a vengeance when all of a sudden as if to tell me they have only been kicking one nut, my other leg starts to shake. this just does not happen...ever. its one or the other not both...here i am stuck between abby and the edge of the bed with both legs doing a jig while jen snores (no clue how the woman sleeps through this). its 1:45am and i want to cry....


Friday, February 8, 2013

Here i am again

here i sit...i guess i should start with how this will go? i will be very blunt with things, no sugar coatings here follks...and the punctuation will be very bad and so might the spelling but i hate spelling mistakes so i will do my best to keep it correct. i used to have a good hand to type with but it left the building...probably with my legs so it is with great labour that i type these escaped to you. i ask that you bear with me and this loose format, if you do i think you will get some pretty good insight on my emotional physical and mental state as we move forward... all of which are in a state of complete fuckedupness (yes i make up words too). talk to you soon my friend.

love,

§TëVë™

after reading the preview i noticed that my blogger account has 21 followers...when did that happen? well...thanks for following and you can join the facebook group §TëVë™ - AN MS JOURNY which i will be doing most of the day to day.

Tuesday, September 21, 2010

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

Wednesday, August 18, 2010

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

Thursday, July 29, 2010

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!!

Wednesday, July 7, 2010

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.

Monday, May 31, 2010

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!!

Monday, May 24, 2010

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!!!

Monday, May 17, 2010

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!!