Kidney disease sucks

Woke up today with my bones feeling weak and my shoulder joints made it hard to have a decent sleep. My left ass cheek muscle albeit barely existing feels like I got a Charley horse. Been this way since I wrecked my leg, which I'll get to one day. And if you know me at all you know I don't have an ass. Fucker just disappeared around 2003 I think. Whatever. Anyways so I'm watching Seinfeld reruns which I can watch forever, and I started to think about how I ended up with renal failure/kidney disease. I'm not sure many people understand how I ended up with it. It leaves (at the very least) a bitter fucking taste in my mouth.
A bunch of years ago in (I get confused sometimes) 1986, I think, I was in fifth grade. My cousins came to visit from Calgary for the weekend. I think it was May or something. My family and my cousins, uncle, aunt, went to the amazing feat called West Edmonton Mall. Great fucking spot to go when your a kid. Fantasy land(which it used to be called), not this Galaxy Land bullshit that had to happen because of Disney. Fuckin money hounds. Anyone who's been there as a kid knows it rules! Rides, parks, games you've got it all. Anyway my cousins and I and my sister, I don't think my brother came, were playing in the park which had all these huge long tubes that you could slide down. I was at the top of one with my legs inside and my hands hanging on to the top so I was kind of swinging my body in and out of the tube. I made one last swing and let go of the top but my butt(haha) wasn't lifted high enough and I smashed my tail bone on the edge of the outside of the tube. Well fuck me did this hurt like hell. I slid down to the bottom thinking, man that fucking hurt alot but walked it off and finished having fun. A couple of weeks later I was having a sleep over at a friends place....I remember world cup soccer 86 games were on t.v....and we slept in the basement watching games...waking up on the couch which was full of holes and lumps it felt like i had a charley horse in my ass cheek...kind of like today...i figured it was from the bad sleep on the bad couch.....i can't remember how long this pain in the ass lasted(not as long as some of the relationships ive been in thank christ), but i wasn't very concerned....i mean how many fucking kids are thinking about getting a disease...kids think about playing sports, collecting hockey cards, finding dads skin mags, and in my case trying to draw Iron Maiden covers...around June i can vaguely remember finding a lump sticking out of my tailbone...and a fairly big lump...probably 2 inches long and sticking an inch out from my body...well this shit aint normal and i can't play soccer, which was half my world....the next few things i remember are kind of sketchy but im sure you'll get it...i ended up going to the doc in St.Albert, was admitted to the hospital, which scared the shit outta me....and they did a biopsy to see what it was....it turned out to be a tumor, yup it was cancer...it was called Ewings Sarcoma....now i didn't really understand exactly what was gonna happen but that summer i started chemotherapy and had a fuckload of tests...some of which i'll never forget due to the 30 fucking cups of glue they make you drink pre test...one test i remember involved the docs getting my bone marrow from my tailbone, i think, they were taking samples of something from that area...all i recall is a huge fucking needle, me laying on my stomach, and alot of nurses...sounds pretty fucking erotic yes?...well they stuck this bloody needle into me afew fuckin times to get what they needed....man, i wish i had those screams that came out of me that afternoon on tape....the grim reaper probably shit himself with fear....so months of chemo started with visits to the cross cancer institute every thursday(i think)....my parents have better knowledge of dates...intravenus drugs like Aidriamiacin was known to have an effect on the heart later in life...it went in my arm orange and came out turning my piss the same color a while later...another i.v. drug called vincristine was pretty fucking strong...i think this was the one that made me really fucking sick....by thursday afternoon id be at home puking any and everything in my stomach until saturday evening...so basically i didn't eat jack shit..,..it just came up...and when I say puking I mean like heavy duty style vomiting....my stomach would be squeezing itself so tight with nothing in it so all that comes out is yellow and green bile and acid...
As well as making me sick as hell the drugs also made all the hair on my body fall out....that summer i remember the hair on my head would become matted and then I could just pull out big chunks of it...it was everywhere....then by the time school started it was almost gone....not an easy thing going to school looking like I did....kids are mean...they stare, actually i also would see adults staring at me like they were seeing a creature from another planet....most kids i went to school with knew and they understood so they were really helpful in it not making a difference to them....another of the drugs i was getting was definitely the worst,...well maybe not the worst but it led to a huge change in to how i'd have to live the rest of my life...it's called cyclophosphomide...7 little yellow pills every day for a few months....now when I was young i hated taking pills with a friggen passion...the sensation of them sliding down my throat was enough to get me gagging...most kids hate doing it...so taking these was damn hard, and my dad and i used to try and come up with ways to beat it...-a little side note here- while on chemo I hated water, I MEAN I FUCKING HATED IT!!!!...my mom told me a few years ago that alot of patients getting chemo dislike water for some reason....anyhoo my dad and I would try anything, like i remember putting the pills into the center of a pickle and trying to get er down....wtf? were we thinking?...have to continue this later....have a nice day..

What's used to kill one thing creates another...part III

Kidney disease sucks

Woke up today with my bones feeling weak and my shoulder joints made it hard to have a decent sleep. My left ass cheek muscle albeit barely existing feels like I got a Charley horse. Been this way since I wrecked my leg, which I'll get to one day. And if you know me at all you know I don't have an ass. Fucker just disappeared around 2003 I think. Whatever. Anyways so I'm watching Seinfeld reruns which I can watch forever, and I started to think about how I ended up with renal failure/kidney disease. I'm not sure many people understand how I ended up with it. It leaves (at the very least) a bitter fucking taste in my mouth.
A bunch of years ago in (I get confused sometimes) 1986, I think, I was in fifth grade. My cousins came to visit from Calgary for the weekend. I think it was May or something. My family and my cousins, uncle, aunt, went to the amazing feat called West Edmonton Mall. Great fucking spot to go when your a kid. Fantasy land(which it used to be called), not this Galaxy Land bullshit that had to happen because of Disney. Fuckin money hounds. Anyone who's been there as a kid knows it rules! Rides, parks, games you've got it all. Anyway my cousins and I and my sister, I don't think my brother came, were playing in the park which had all these huge long tubes that you could slide down. I was at the top of one with my legs inside and my hands hanging on to the top so I was kind of swinging my body in and out of the tube. I made one last swing and let go of the top but my but wasn't lifted high enough and I smashed my tail bone on the edge of the outside of the tube. Well fuck me did this hurt like hell. I slid down to the bottom thinking, man that fucking hurt alot but walked it off on e

Kidney disease sucks

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Kidney disease sucks

I figured it was about time to continue my story...some fucking Kevin Sorbo flick with him as this rancher was on and maybe that inspired me, who fuckIn knows? Maybe it Julius saying "school is OUT Mccullugh". Who fuckin knows? I think I'm at the point of my life where there's a few years of almost normalcy, the last I'd ever see. Ya know playing music getting high drinking, trying to impress young women all good times. I started having to piss ALL THE TIME!! Like every 20 min. Plus I was thirsty as fuck. Drinking and pissing is all I did. Realizing this could not go on I saw some great docs and they told me....son, your bladder is finished. What? It's shrunk and undo able. Holy fucking Christ if that wasn't the bag over the head fuckin Xmas gift! They did have a plan for me though. Now I'm not sure how many people k ow this about me but here it is. They decided to make a new bladder for me out of part of my lower intestine which they'd place to the right of the old one. They then too the two ureters and placed them into the new bladder which is called an Indiana pouch. Not sure why maybe the wizard who invented it is named Indiana. Then a passage of about five inches comes out to the opening on the right side of my belly button. So it looks like I've got two buttons about 10cm apart on my abdomen. When I have to piss ill feel a kind of cramp in my right side and in order to go I've got to use what's called a size 16 French catheter which I insert up into the new bladder and tah-da piss is taken care of for about four hours. Then I do it again. Been this way since 1995. Some may wonder why I've always used the stall. This is why. Plus I've gotta have super clean hands and everything else every time. Not the easiest thing to explain to a girl. Actually all I've had to e plain to we're great about it. Maybe they didn't understand but they never cared which was kind of surprising. More tomorrow maybe

Kidney disease sucks

so obviously if youre reading these rantings youll realize i havent written jack shit in a while...the past couple of weeks have seen me injure myself like a fuckin circus clown to no fuckin end...i think i mentioned the awesome bail outside my house that fucked my knee again...man i even laughed at that one...then i wrecked my rotater cuff, which wasn't all bad but still...then last friday my fistula clotted near the end of my dialysis run...i was told to come in the next day to see the doc which i did but because it was a saturday there was nothing that coild be done until monday i was told....actually i think somebody dropped the fuckin ball or was being extra fat and lazy and just said they didnt wanna bother with it...either way i came in monday...now im thinking all weekend that they'll send me to radiology and i'll have whats called a fistulagram/angioplasty....this is where they inject contrast into my fistula take pictures and find out where the problem lies...then they shove wires into the fistula which is actually a hevy duty vein and atrery combination that was created to give me dialysis, to guide the balloons into the fistula to expand the narrowing that re-occurs every couple months, only this time i figured theyd be removing the clots....well NO DICE!!!! somebody already made the decision that my fistula was fucking finished and i needed to be saddled up with a perm cath...a perm cath is a line inserted into the vein on your neck which runs down and has two tubes which hang off your body around the left or right side of your chest, depending on what side they use...this is for dialysis access until my fistula gets fixed or they make a new one somewhere else on my body, probably my other arm...fuck...now you believe i was upset at this, very fucking upset...i mean i know a fistula doesnt  last forever but fuck me...fuck sakes...so monday the put this fucker in and then come home....once at home i needed help getting up so my lady offered and as she pulled me up by both arms my left shoulder went CRACKPSSSFSFTSFSTS!!!...and proceeded to hurt like fuck...now an arm that was just hurt a bit is now stuck to my side because i cant lift it for shit without it screaming out for vengance at me...fuck off...fuck

theres a fella i met named Bubba and he and i became pals...we made fun of each other cause we both use a cane...anyways he decided that he wanted to be a donor for me and he came with me to one of my appts to find out his blood type...blood was drawn and two weeks later he tells me he is O+ which is awesome because that means hes a universal donor and can donate to anyone...its good because im O- which is fuckin pretty rare...he's now onto a shitload of tests which could either make or break the donation...i tell you i was fuckin blown away by Bubba, hes one scary lookin dude with long hair a beard sleeves of tattoos and he sure does block alot of sun....but hes the sweetest person youll ever meet, an i aint just sayin that cause hes stickin his neck out for me...he fucking is.
there was also another girl whom i worked with that was going to donate a few years back but when she got to the second round of tests they told her she couldnt continue for reasons i dont wish to share here, you rule Kassandra, all 100lbs of you,
since i was diagnosed with kidney disease/renal failure ive had people in my life express that theyd like to help me, i wont name names for fear somebody cant handle the truth and has a fucking conniption fit...alot of the time drunk friends would find out and tell me on the spot that they wanna be my donor and "letssss fuh-kin do th-hic-issss maaa-hic-nnn" "i'll fuhkin d-hic-onate" only to A. not remember saying fuck all and B. never bringing it up with me cause they opened theyre chicken shit mouth and wanted to be a hero while they were hosed...heres a fun fact: even though things a drunk says should be taken with a grain of salt, sometimes you dont know how serious they are, bottom line, youre fuckin playing with my life and personal well being grow up or fuck off!
theres also people who talk to me and show interest that arent drunks or drinking or under influence of any substance, to my knowledge anyways...they say they want to be a donor and i say thats awesome here are some numbers to call and these people will get you on the path to becoming a donor...its always really uplifting to hear something like this, from anybody...usually the person has had some kind of loss in their life and feel the need to do something to give back...which is really great for people in my position...ive also had friends come to me and express interest, which is potentially one of the most rewarding..
ive posted on facebook over the years that ive got kidney disease and need a kidney and the message goes to all my friends, something like 350 or something...now i dont think all of them faithfully use facebook but even after repeated postings about how kidney disease was ruining my life i wouldnt get barely 10 replies to it....shit sometimes i got fucking zero.
i had friends tell me they were interested but couldnt help at the moment because of bad timing and that in a while they would be able to....telling me at the same time they wondered why my "single friends with no spouse or kids" at the time hadnt gone to find out if they could be a donor, well they still havent gone even after calling out other friends of ours...this is weak if you ask me,
ive had friends tell me they feel guilty about not being a donor for me....well i tell ya THAT IS CRAP!
the bottom line is this...I DONT HAVE ANY EXPECTATIONS FROM ANY OF MY FRIENDS TO BE A DONOR!...people feeling guilty about not being a donor for whatever reason means i have expectations from them, the fact that theyre feeling guilty makes the situation about them, and it isnt, i love the fact that people wanna help me but for fuck sakes being honest is one of the best and most uplifting things you can do, what you think im gonna make fun? NO FUCKING WAY!!! being a donor means losing something,tests,hospital stays, needles, scalpels, etc etc...it sucks and takes a ton of dedication...it aint easy....
people have theyre reasons for changing their minds...i respect them all...the fact they show any interest is fucking killer and a hi fives to them...its just when some treat it as "oh whats cool this week?" type of scenario...fucking lame because they dont realize theyre playing with somebodys health and well being.
i may have ranted and offended some people but i still have a great place in my heart for anybody who has shown or done anything to help me and my fight against kidney disease...i just tell it like it is and how i see it which is how it happened...if that unsatisfactory to you...get your own disease.

Kidney disease sucks

so yea, i figured that i can suck it up and write...maybe i was being lazy or uninspired...most of this shit i write at night or around 4 or 5 am...
thru the next few years the efx of the chemo and radiation were kind of small and unremarkable...id have to piss every 2 hours, more if i was drinking alot, there was occasional clots that fucking surprised the living hell outta me when they happened, i mean my piss stream would suddenly slow down and stop and then all of a sudden theres pressure like fuckin mad like a champagne cork getting ready to blow and then fuh-kin BANG!....damn i hated those..
then in 1989 i started walking with a noticable limp that started getting pretty bad, turns out my right femur was slipping out of joint at the top where it connects to my pelvis....this was from the damn radiation that had weakend the socket and what holds the femur in place, so in order to fix this shit i had to get a four and a half inch screw drilled into my hip and femur which is now pinning it in place...i dont limp anymore, it worked out great although i wonder if the pain ive been getting from the top of my ass down the back of my legs to the bottom of my feet is related....this is a fucking pain ive been getting since 1993, like 18 fucking years...it always seemed directly related to sex...after sex is supposed to be a really enjoyable experience and yes i experienced many awesome times but also just as many times afterwards firing down xcess amounts of useless tylenol, advil, whatever crap was on hand, hot as hell showers, wishing i had a jacuzzi with some fucking jets as powerful as a firehose...just to try and get some relief from the fucking pain that usually lasted hours and hours, im still on the hunt for the cause of this pain...honestly i think its related to the small membranes that are wrapped around my testicles, no shit ive looked it up, im probably wrong but....