Posts Tagged ‘living on a ventilator 24/7’

On Tuesday, I headed over by the casino to meet one of the organizers of the casino sound & light festival to discuss improving wheelchair accessibility.

The ride there was interesting.

The para transpo driver had no idea where I was going, and it had been two years since I had been there. For some odd reason, he kept asking me for directions on how to get there.
There’s a few reasons why that’s a horrible idea.

1. I don’t drive.
2. I assume most disabled People don’t go to home renovation stores often, so I had no idea where to turn off, or what streets to take. (I was going to Reno Depot, which is the french version of Home Depot.)
3. My direction skills are HORRIBLE. I’m not kidding either. I once got lost when I came out another Door of my wife’s workplace.

After about 45 minutes of trying to read french road signs, and asking 3 random car drivers on the road, we discovered that we were in the opposite end of Gatineau. I somehow still managed to make the Meeting semi on time.

Our meeting went well. I was given a very thoroughed tour of the site. As it turned out, the main reason, I had so much trouble 2 years ago is because my wife and I had general admission tickets instead of reserved seating. If you buy tickets for the reserved seating section, you can sit on a platform, which is directly in front of the fireworks.

The view there was absolutely beautiful, and it seems like it’d be incredible at night.
One of my beefs is that I’d have to pay extra for my attendant, which is extremely stupid, plus expensive. So, I will be writing a letter to the festival president to see if they’ll drop that policy.

When I was a kid, a roommate (at the hospital) went on TV to discuss how unfair it was that we had to pay for our personal care attendants if we wanted to see a movie. It turned out that our complaining made life easier for us, and other severely disabled people.

After that, it was up to the theatres on whether or not to let them in for free. Nowadays, for the past few Years, we’ve been issued an “Access 2 Entertainment” card. Whenever I go see a movie or a special event (like wrestling) at the movie theatre, I show them the card, and just pay for myself. The next step is trying to convince concert/sports venues to do the same. I’ve been discussing it with different places for many years now, and it’s a never ending battle.

Speaking of movies, on Tuesday night, I checked out The Other Guys, starring Mark Wahlberg & Will Ferrell.

For those who don’t know, Mark & Will work for the Police Force, but not as Cops.
Will’s an Accountant, and Mark was relieved of his cop job after shooting Derek Jeter.
The two of them team up to try to solve a crime in the hopes that they can earn a cop job.

This movie pokes fun of other cop movies, especially buddy cops movies.
The duo of Will Ferrell and Mark Wahlberg came off very well, and extremely funny, and it also helped that Eve Mendes was in it too. She played Will’s wife, and Mark’s absolutely stunned that she’s married to Will.

To me, Will Ferrell is a hot/cold type of actor.
On the hot side, he’s been in such great movies as, A Night At The Roxbury, Old School, Anchorman, Elf, Talladega Nights, Step Brothers, and Blades Of Glory.
On the cold side, he’s been in movies like Bewitched, Semi Pro, Stranger Than Fiction, and Land Of The Lost.

To me, The Other Guys, is one of his better movies.

As far as the rating, well, I give it a solid joysticks up. I highly recommend it, especially if you’re a Will Ferrell fan.

The rest of my week was spent trying to fix the weekend schedule for my attendants. For the longest time, I’d be without anyone for 32 hours, which is very bad considering I require 24/7 care.
Luckily, I managed to convince people to work, including a brand new attendant, and 2 that no longer work here regularly.
All that matters is that everything worked out, and I’m proud of myself.

As for my weekend plans, Saturday’s gonna be a busy day.
My sister and nephew are in town.

Saturday morning will be spent with my family visiting my Grandmother. My Grandma will be having major surgery next Wednesday, so we’re all gonna visit her at the nursing home.

After that, my sister and I will be heading to a Tattoo Shop to get tattoos. My wife’s coming too, but not getting one done. I hope to shoot some video footage of me getting my tattoo done.

After that, we’re all heading to East Side Mario’s for a family dinner. It’s very rare that we’re all able to be together, so this will be a special occasion, and I’m really looking forward to it.

As for Sunday, I’ll probably sleep and relax after a long day.

So on Monday, I retrained an Attendant who’s returning after being away for a Year.
Everything went fine, and she remembered how to do everything.
I also interviewed a new Attendant, and she seems good.

As for the rest of the night, I did laundry, reserved a table for a Dinner date with my Wife for our Engagement Anniversary later this Month, and vegged.

On Tuesday, I trained another new Attendant. This was her first day, so it went ok. On the first day, they usually just suction me at the end of the day. She did, and it went well.

I spent the Evening with my Wife.

As for Wednesday, three hours was spent learning about my new Ventilator.
It’s ok, but it’s really freakin loud, and has alot of bright lights.
Right now, I’m just gonna use it when I’m sleeping.
I’m not really sure how well I’ll sleep, but I’ll find out tonight.

Eventually, I’ll be getting a second one to put on my Wheelchair.
My new Wheelchair’s gonna look like the Car in Back To The Future.

And now it’s time for the “is this really happening?” moment for the Week:

As some of you know, I was supposed to meet with one of the Organizers of the Casino Sound & Light Festival to discuss ways of improving Wheelchair Acessibility.
So, on Wednesday Morning, my Attendant called Para Transpo (Like I’d get up at 7 am.) to book my ride.
Well they said that Para Transpo doesn’t go there. HUH? Since when?
That makes no sense whatsoever.

Anyways, we’re gonna try to meet up next Week.

As for the rest of this Week, I’ll be checking out Fortissimo on either Thursday or Friday night.
Fortissimo features Military Bands, like Bagpipes, & Drums, and also features live demostrations of things.
It takes place on Thursday, Friday, Saturday, & Sunday at 7:30 pm on Parliament Hill.

No other Weekend plans yet.

So, as most of you know, I wasn’t at Bluesfest on Thursday Night.
Instead, my Wife& I went to see a one man play put on by good friend, Alan Shain.
For show details, just read one of my posts here from this past week.
The show was pretty good, and I suggest you folks check it out if you can.

With that said, let’s talk about stuff that also happened last night.

My Wife & I went for Dinner before the show at The Table, in Westboro.
I ended up having Chocolate Cheesecake, which was awesome!
The Theatre was right across the Street, and we managed to get inside right before it rained.

After the show, we hung out, & chatted with people, including the main star.
From there, we headed home on the OC Transpo.
We had to transfer soon after because we arrived at the last stop.
No big deal.

That was pretty much our night.

As for (Friday) today, I wanted to do laundry, but I forgot that I was out of Bleach.
I went to Shoppers Drug Mart, but they were out, tried another drugstore, but they were out too.
Finally, I had to go to a Corner Store to get some. I ended up paying almost $5 for it.
At least, I was lucky enough to just miss the rain.

Just because I’m disabled, it doesn’t mean that I don’t deal with life’s little annoyances.

As for Bluesfest, luckily I have a ride tonight so I can see Louis CK even if it rains.
The show’s inside a Tent.
I’m not sure if I’ll get to see anyone else. It depends on the Weather.
Apparently, it’s supposed to be nice all weekend, so even if I only see one show tonight, I’ll make up for it this Weekend.

Weekend highlights for me:
Big Jeezus Truck, Staff Benda Bilili, The Flaming Lips, Steve Poltz (hopefully) & RUSH.
I’m sure there’s TONS more too.

Speaking of Bluesfest, here’s the Interview/Article about me from Bluesfest. http://www.ottawabluesfest.ca/node/1081

Please check it out.

As I said in my last post, if you see me around the Bluesfest site, don’t be shy, come over & say hi to me. I love meeting new people, especially at Bluesfest.

For those wondering what I look like, well, I drive a HUGE black powered Wheelchair. From the front, I wear a Mic near my mouth to amplify my voice. From the back, I have a Backpack on the back of my Chair, and a Ventilator to help me breathe..

So there ya go.

I hope everyone has a great Weekend out there.

Rock on!

First of all, I’d like to wish all of the Canadians a Happy Canada Day.

So, with today being Canada Day, I figured that I’d share some of my favorite memories of Canada Day.

Let’s start when I was a Kid.

As most of you know, I lived at the Childrens Hospital Of Eastern Ontario. Some of you also know that I spent the first six years in ICU.
At the time, ICU didn’t have any windows, so I wasn’t able to see Fireworks until I was at least six years old.

It was a big event for me.
Not only would I get to see Fireworks, but I also got to stay up late too.

I watched the show on CBC before they started, and suddenly I heard BOOM!
I started crying because I had no idea they’d be so loud.
I went to one of the big windows to watch it with the other kids.
After awhile, I calmed down, and thought they were beautiful.

A few Years later, or something is when my next story takes place.

One Year, my Mom took me to my Dad’s Office to watch the Fireworks.
We had a great view because he worked downtown.
At some point, I had to pee.
Normally, when I pee, I just whip it out and piss into a small Urinal that sits between my legs. Sexy eh?
As it turned out, my Mom forgot to pack it.
We couldn’t find any Cups or jugs that would work, so I ended up peeing into a Rubber Glove.

As if it wasn’t embarassing enough having my Mom help me pee, she also had to hold a Rubber Glove to my Crotch while I peed.

Luckily, everything worked out, and we enjoyed the Fireworks.

So, my next favorite one happened about six years ago.
I had just started talking to my now Wife, and had recently met.
She wasn’t able to be here for Canada Day that year, so I decided to one last hurrah.

I headed to a Bar in the Market, which had turned its Parking Lot into a huge Bar, complete with a Stage.
Lucky for me, the Stage had a ramp.
After a few Beers, I decided that I needed to get on the Stage. So, I started going up the ramp.
Well I tried to, at least.

I got stuck halfway up because the ramp was really steep.
I asked my Attendant to help me up.
We tried again, but something else happened.

My leg had fallen off the side of my Chair. Whenever we tried going up the ramp, my foot kept getting sandwiched between the ramp, and my Chair.
I started yelling, but my Attendant couldn’t hear me.
Eventually, we made it up on Stage, and I started dancing on Stage.
At that point, all was fine, until I went pee.

The Bar had set up Port-O-Potties, but I couldn’t fit inside. I peed outside, which was understood, but my Attendant decided to do the same.
He got caught, and they kicked us both out.
As for my leg, I woke up the next day to it being black & blue.
I thought I broke it, but luckily I didn’t.

My next & last memory that I’ll share here happened a few years ago.
My Wife & I were near Parliament Hill watching the Fireworks.
Suddenly, the Battery for my Ventilator started beeping just as the Fireworks began.

So picture this…

Most people had started running down the Street towards the Fireworks.
We were running away from them, and for some reason, screaming and yelling.
People were looking at us like we had done Acid and thought we were being attacked.

We made it home safe & sound.

So as you can see, I’ve had some crazy times on Canada Day. No matter what, I always make it a point of seeing the Fireworks.

I guess in a way, it reminds me of the first time I saw them.

All those Years ago, back in the Hospital.

Happy Canada Day!

On Wednesday, I went to see my Respirologist to tell him about my recent Lung blockages.

Long story short, I’ll be getting a Chest X-Ray next Week, and he suggested for me to start using my Humidifier at home again.

I’m not a fan of using the Humidifier because last time I used it, I got sick. I got sick because Water kept getting into my Lungs, which isn’t really a good thing.

At this point though, I’m willing to try aything.
I’m going back to see him on June 16th.

While I was in his Office, we went through all of my old Chest X-Rays.
X-Rays have always interested me, even as a Kid. I think it’s cool looking at your own insides.
I gotta say though, my X-Rays always look really freaky because of the way my body is shaped.

In other news.
I’ve been using my Voice Amp wherever I go now, and it seems to be successful.
If I go to a Restaurant or Bar, I can actually order a Drink myself, which is a new experience for me.
I always had trouble ordering stuff due to it being loud, so whoever was with me would usually give the Waiter/Waitress my order.

Wrestling fans:
Tune into WWE Smackdown, and you might see my Wife and/or I on it with our sign for Kofi Kingston. The sign is on green paper, with a picture of Kofi Kingston jumping, and in big letters, it says BOOM BOOM BOOM.
If they show it, you can’t really miss it.

It’s a long weekend here.
My Wife & I will be at the grand Reopening of the Museum Of Nature tomorrow.
They spent a crapload of time and money renovating it, so we’re looking forward to seeing all the work they did.

I have an interesting story about that place.
The first time I went there as a Kid, I didn’t know they had Models of Dinosaurs & Dinosaur Bones.
As soon as I entered the Exhibit Room, I actually crapped my Pants because I was scared.
They had to take me to the Bathroom to change me.
I remember one of the guys had his Jaw wired shut due to Surgery, and he was scared of throwing up, so he left pretty fast.

I’ve been back since and everything was fine. I was still scared, but nothing has happened since that day.
Just to add to that challenge, I’ll be going on a Ghost Tour of the Building later that night too.
Hopefully, everything will be fine.

Well that’s it for now.
Have a good Weekend.