Friday, August 19, 2011

Why Are You Following Me?

A few days after I got off my crutches, I got to graduate.  The Jubilee was under construction, so we got to graduate in the gym of the University.  Our whole graduation (ceremony, reception, aftergrad party) was on the same day.  I wore a blue dress with a jacket over it I think, and these really cute flip flops that had a little bow on them (flats, because I wasn't allowed to wear heels yet).  I was looking like a weird upper body builder who forgot she had legs, because my arms were ripped and my legs were tiny stick legs, so I didn't really care what I looked like.  I hated high school anyway at this point, and didn't mind that I was probably never going to see any of the people again, so this wasn't special for me at all.

We got to the University, and we went through all the "oh my god, we're pretending to be friends, lets take a thousand pictures that we'll never look at again because we're pretending we like each other" thing.  We went through this pretty quickly, and I went back to hanging out with my parents and grandparents.  A little while into getting there, we got to go downstairs and get our gowns on, and then got a few more pictures of that.  Click click click.

Finally, we got to get all lined up to go into the gym.  I got to stand at the front of all the people, even though my last name starts with an N, because I was going to leave right away after.  We decided I probably wouldn't be able to sit there for the whole 3 hours without pain or discomfort, so we decided that was the best option.  We walked in, and I sat down in the chair beside my dad (he was there for me to hang onto while walking to and from the stage).  They went through a couple of speeches, and then the first round of diplomas were given out, which included me.  Dad walked me up, then went around the back to the other side of the stage.  The guy read out my name, and I walked over to shake the people's hand and get it.  The picture of this is actually really funny, our principle had to lean down really far to reach my hand (because I'm only about 2 feet tall), and my face is white like a sheet because I'm already getting dizzy.  Then I walked to the end of the stage and down the stairs, where Dad was waiting.  We walked down the aisle and out the back door, giggling because we got to leave early.  Then we turned around, and saw that the next person had followed us!  I was like "what are you doing! You're supposed to go sit down!" and he was like "Oh!" and ran back into the gym.  It was hilarious.

So then we handed the gown back in and met up with my mom and grandparents, and we went to Boston Pizza.  We had a niiiice lunch while all my classmates sat in the warm, stuffy gym listening to boring speeches.  Then we went back to my house and got ready for the reception.  Once I got dressed up, we took a couple of pictures in the living room, and then all went out back for a beer.

I had on a blue dress that hooked up in the back (so I wouldn't trip on it while I walked backwards, apparently), and black gloves, and a rhinestoned top hat. I also had on a bunch of jewelry that used to be my great nana's.  I brought my Mom, my Dad, Kyle, Kyle's girlfriend at the time, and my boyfriend.  Our goal was to fill up 90% of the table (succeeded!)  Se we all had a beer together, and then all jumped in the jeep (someone else had to have driven...maybe we took Garth the van? Oh well) and went to the Telus Convention Centre.  I don't remember much about when we got there...probably because it was so uneventful.  For some reason when we went in, we all went in a big line and walked around the room, as if no one had ever seen us before.  Then we stood there for a couple minutes, extremely awkwardly, and then all sat down at our tables.  While we ate our terrible meal, a "slideshow" went up on the screen, which was literally just our pictures out of order to a lame song, and it was on repeat.  It sucked.  I hope the guys who made it didn't get a job making slideshows.  After the meal, my boyfriend told me that he'd brought rum, so we drank some of that.  Then we danced for about three songs, and we went home.

After that, my boyfriend and I got ready for the aftergrad.  This literally involved a change of clothes, and another beer.  Then Dad drove us to the aftergrad.  I was still 17 so my 18 year old boyfriend got a wristband and I did not.  We danced a bit and hung out with some people (his friend, who's now a cop, was also there, feeding beer to his 17 year old girlfriend through their mouths...it's as gross as it sounds).  Then, one of my friends who know the owner got me a band, so I had one beer, and then danced the night away.

That was the last time I saw most of the people from high school.  I went back only one day, to pick up my yearbook, and I snuck in and out so I wouldn't see anyone.

Sunday, August 14, 2011

Is It Just Me, Or Is It Kind Of Warm In Here? Oh, Now It's Cold. Soooo Cold. Now It's Hot! Ahhh!

Finally, the date come for the two-month-after-surgery appointment with my orthopedic surgeon.  We were pretty sure I'd done well enough for him to know what I was going to be able to walk.  Instead of waiting in the office for three hours, my mom called about an hour before and asked how far behind they were.  Then we sat at home and kept busy until they caught up, which was about two hours.  Then we drove to the hospital and rolled into orthopedics.  We still had to wait a bit, but it wasn't super long, so it wasn't so bad.

We rolled into the examination room and parked me in the corner (facing out) by the bed.  The doctor came in.  He checked my most recent MRI's, and told me that I was going to be able to walk!  Then he asked if we brought the crutches, which we didn't.  So he said no problem, stand up!  This was terrifying.  I think Mom's exact words were "What! No! Ahhhhhhhh!"  So one parent stood at the other end of the room, and the doctor and the other parent stood beside me in case my hips suddenly shattered like your dreams when you parents told you that you can't live in their basement and play video games for the rest of you life.  So I put my hands on the arms of the chair, and used my now super built arms to push myself up.  You know when you work out and you take it past the last rep and your arm feels suddenly like it's never going to lift anything again?  That's how my legs felt.  I got to the maximum reach of my arms (four inches...well more like twoish feet) and went "oh my god" and sat down super heavily in my chair again.  I lost so much muscle in my legs!  I thought they actually weren't working.  He told me to try again though, and I got up and managed to waddle over to the person across the room, toddler style, and back again.  Then I sat down, exhausted.  He told me I could start crutching around when I got home.  I was so pumped!

So then we go into this one room where they usually cast kids, because he wanted to see the incisions, or something.  While we were in there and he was looking at them, I asked him how long it would take until I could get my nose pierced, and how long until I could get a tattoo.  He started ranting that I was too young for both, and then grabbed my transfer board and pretended to hit me.  It was hilarious.  He told me quite a while, because if either of them got infected, it would go straight to the rods in my hips, which would be terrible.

Then we went to physio.  They taught me how to walk with crutches (crutches first, then one foot, then the other), and also how to walk up stairs (foot one, foot two, crutches).  Then I went in my chair and we rolled back home, where I had a terrific, long nap.

There was still about a month left of school, but I didn't go back.  I'd pretty much finished my social 30 by this point I think (and was exempt from the diploma exams again, for medical reasons... I think I actually had only taken the Chem 30 diploma the year before by the time I graduated), and there was no need to go back for friends.  I missed a lot of stuff in regards to graduation stuff.  I went in one day with mom to drop stuff off, and I caught a glimpse of the graduating class board that had all of our pictures.  I saw that my name was spelt wrong, and I chuckled at it.  This guy who worked there was like 'what are you laughing at?' and I'm like 'oh, my name's just spelt wrong.' and he goes 'well you should have told us a long time ago!' and I was like 'well that was at the top of my priority list, so...'  I missed all the grad rehearsals.  I'd actually managed to get one in before my surgery, which involved me getting a massive panic attack (my first!) and bawling in the office until Kyle came and picked me up.  Apparently my friends all saw him come in and said hi, and he didn't even look at them.  So I spent this month healing at home, playing The Sims.

I realized I was going to have to start thinking about work.  At this point I'd been lifeguarding since October (this was May), and I obviously was still going to need time to heal before I could guard or teach lessons.  My boyfriend at the time worked at a Ford dealership as the receptionist as he went to Mt. Royal in business or something, and for the summer he was going to move to the service department, so he got me a job as one of the part time receptionists.  I remember them asking me how long I was going to be on crutches, kind of in an annoyed tone.  It bothered me, because it's not like my weak legs were going to somehow stop me from answering phones and paging people.  Except for those times that I answered phones with my feet, but that was pretty rare.  However, I told them that when I started (in a couple of weeks), I was going to be up and walking, so they were happy.

At this point, my rheumatologist decided I was going to go on a new drug, Pamidronate.  The point of it was to get my body to stop eating the dead bone in my joints to try to give my body a chance to revascularize it.  It wasn't very widely used, and actually was mostly used in cancer patients.  I would get it over three days every three months for eight hours a day.  Before I could take it, I needed to go in for an EKG.  We went into the children's again to get it.  I've always liked the EKG tests, because they put a ton of sticky things on  you and then just start the test up, there's no effort involved by the patient whatsoever.  This test, as with all the blood pressure tests I get, still made me freak out a little (I'm always waiting for an "Oh my god, what is wrong with your heart!!!!"), so I controlled my breathing (in for four, out for eight).  And, as usual, they asked if I was athletic, because I had a really low heart rate.  I'm not.  In fact, the first time I was asked this, Mom laughed her head off.  The EKG came back good, so I was a go for the Pamidronate infusions.

I'm not sure why, but during this time people always asked me how the blood transfusions were going, which would make me have to explain all of it all over again.  I'm not sure what people were thinking, because as far as I know, I didn't and don't need blood transfusions.  So remember: Pamidronate Infusions, not blood transfusions.

We went into the day surgery ward to get this infusion, at the time it was ward T.  I was warned that I was probably going to get a fever from this, nausea and slight discomfort too.  Then I was hooked up to the drug and settled in to watch TV for the next 8 hours.  Then the fever started to hit.  Throughout the day, my temperature went from normal (37 degrees Celsius), to 39.6 degrees Celsius (103.28 degrees Fahrenheit).  Not only that, but my veins really started to hurt.  At the end of the eight hours, they put me in a wheelchair because my arms hurts too much to use crutches, and we rolled me back to the Jeep.  We actually have a picture of me sitting in my wheelchair in our driveway with my blue downfeld blanket wrapped all around me so you can only see my angry eyes because my fever was making me so cold.

That night, my arms started getting red streaks from my wrist to my shoulders.  I was holding both arms up, holding on to the other shoulder, to try to keep them elevated (at some time throughout the day they'd changed the IV from one arm to the other), and they were both hurting a lot.  My parents kept asking if I wanted to go to the emergency room, and I kept saying that I could wait it out until the morning, when we'd be going back for more infusions.  Finally, at about 11pm, I said that yes, we should go to emerg.  We got into the jeep and went back home, oh I mean to the hospital.  We went into emerg, and got into a room right away again.  They said that though it's likely inflammation (phlebitis, they called it), it's impossible to tell the difference between inflammation and infection, so they were going to have to pump an antibiotic into me intravenously, through the already super painful veins.  This was when I started getting IV's in my wrist.  There's a few IV scars on the front, and they're all from this trip.  That was the only vein that would take the IV without just rejecting the drug altogether.  They put a bit in me, and then told me I'd have to go back in a few hours when the infectious disease clinic opened.  We did as we were told, and when we came back we were put into the orthopedic unit, which doubled as an infectious disease clinic on the weekends.  I got to lay on an all-to-familiar bed, and I got more antibiotics pumped into me.  Then, when we were done, we got to go back to get more infusion.  After all this, besides being extremely hydrated, I was questioning whether or not this drug was worth it.  We were assured they were, however, and I was told that in the future, I was going to be doing one day a month for about 13 hours a day, because if the drug went in any faster, my veins would get mad again.

Coming up to the end of my crutch time, I was feeling a lot better and was looking forward to my upcoming graduation.  This was in May of 2005.

Monday, August 8, 2011

Kickstart My Heart....Not What You Think

Time went by pretty slowly for me for the next two months.  Mom would come downstairs at all hours of the night if I needed anything, like painkillers or a glass of water.  Have you ever tried to drink a glass of water while you're walking?  Now try it when you're using both hands to push your wheelchair.  Not so easy now, eh?!

During this time, I remember mostly Kyle's band coming over and jamming in the basement while I was rolling around upstairs.  I was happy, because it made me feel like I was out at a concert, something I missed while in my wheelchair.  At one point I asked Kyle if I could learn the bass while in my wheelchair, and we took the arms off the chair and put it on me.  That was when I realized I couldn't ever learn to play the bass because my hobbit arms were too short.

This was the point that The Sims really took a big part in my life.  Mom and I took one of my few trips out of the house to go to the mall to get an expansion pack.  We'd already spent my graduation money on a laptop for me because we realized that I wouldn't be able to do much else, so I was all pumped to put this expansion on it.  We rolled into Compusmart in Market Mall, got it, and came home.  I tried to install it and watched as the progress bar began to fill.  30%, 40%, 50%, 60%... and then it didn't move anymore.  It got stuck at 60%.  I was super upset, and already pretty exhausted from our previous outing, so Mom made me have a nap while she took it back and got a new one.  Well, that one did it too.  And so did the next.  Finally, Mom just returned it and went to EB Games.  That copy worked.  That's the reason I only get games from EB Games now.

I couldn't get upstairs to shower (except for one time, where Mom and Dad made a sling with their arms and lifted me up... I've been trying to get them to do it again ever since, but to no avail), so Mom and I had to go to my pool (because I was a lifeguard at this point) to shower.  So one day, Mom and I got ready to go out to this pool to shower.  We put the ramps out the back door (because it was less of a slope, and thus less likely that I would take out the person helping me down going 60km/h) and we got me down it.  Then, for some reason, Mom decided we would roll around the house at a full out run.  Did you know that wheelchairs have seat belts?  I found out why.  We hit a hole, and if I hadn't been holding on as hard as I was, I would have gone flying off my chair and shattered my hips.  Hilarious at the time, but now that I think about it, I'm pretty sure she was trying to kill me.  Well, you haven't succeeded yet Mom!

The only time that I remember negatively in this time had to do with my high school friends.  None had visited me in the hospital again, which sucked, but I had my boyfriend at the time so it wasn't so bad.  Well, they decided that they were all going to pile into a couple of cars after school one day to come and visit me while I was at home.  However, they failed to tell me about it.  Mom and I happened to be headed for Market Mall at this time, and it took me about a half an hour to get into my car.  So I got a phone call from one of them telling me they'd be there in about 10 minutes.  I was upset, because this was the first time they were visiting and if I managed to get back into the house in the allotted time, I'd be so tired already that'd I'd just fall asleep when they got there.  So I told them the truth: I wasn't home.  They got mad at me and decided it was my fault.  I hung up feeling pretty low.  I felt it was unfair that I already had so much troubles healthwise in my short little life, and now I was getting mega rejection from my friends because of it, even though neither of those things were my fault.  Mom cheered me up with a good ole' "buck up, buttercup" and we were on our way to the mall.

Two concerts happened while I was in my wheelchair: Velvet Revolver and Motley Crue.  They were two of my favourite bands, so I had to go.  My boyfriend and I got my handicapped placard and went off to the Saddledome.  The band's were awesome (at the VR concert, Kyle even got me Slash's cigarette <3 because he was in the front row, the place that I would also be had I been able to walk).  When we were at the Motley Crue concert, I had to go to the washroom, so I pushed myself into the women's.  As I was washing my hands, I heard someone go "hey, you can't be in here!"  I turn around, and there stands an extremely drunk Kyle.  There was a line for the men's room, so he came into the woman's (wearing his friends shoes, for some reason).  As the women in it started to get angry, I said "it's okay! He's my brother!" and everyone kind of went "ohhhh okay" and calmed down.

Another new thing we got during this time was our Jeep.  Mom and Dad's car at the time was the Opaz, which I was using whenever I could, and Kyle had Garth the van, so they needed a new vehicle.  They bring it home one day, and took me and Kyle outside to see it.  To get me into it, however, Dad had to lift me up from the chair and put me in the Jeep seat, because it was wayyyyyy too tall for me to transfer into.  It was a cool vehicle, and I got to claim the front passenger seat because it was easiest.

During this time, we thought it would be good for me to get my hair cut.  It would be hard getting me into my hairdressers house, so my hairdresser decided she was going to come to me.  She came and cut my hair in the middle of the kitchen, like Mom used to do when we lived in Ottawa.  It was really nice of her, and I'm super appreciative of it!  She's the best hairdresser I've ever met, so caring!!

The last awesome story I have about this time is when we went to Hys, this really high end restaurant.  I'm quite the steak fan, so I was immediately stoked to go.  We had a great time, and at the end they asked if we wanted deserts or speciality drinks.  My family all chose Spanish coffees or whatever, and I, being a tea lover and under 18, ordered a blueberry tea.  The waiter kind of looked at me, then at my parents, and then said okay and walked off.  Then he returned with Amaretto and Grand Marnier, poured them together, and told us to enjoy.  We all looked at each other.  None of us had heard of this, and I had successfully ordered alcohol underage because he didn't want to ask me for ID!  Too bad I wasn't a drinker.  I had it anyway though.

Coming to the end of the two months, I was healing pretty well.  I still couldn't put weight on my legs, but I was close!

Monday, August 1, 2011

Are They Moving? How About Now?

The time in the hospital for my hip surgery was okay.  Because I couldn't put any weight on them, I was given a transfer board, which is pretty much just a wooden board that's about a foot long.  I had to use it to get from the bed to my wheelchair, or from my wheelchair to the toilet, etc.  I couldn't put any weight whatsoever on my hips.  It was pretty hard.  My arms aren't giant pipes by any stretch of the imagination, so I got tired pretty easily.
The feeling in my limbs took forever to come back.  They slowed the flow of the epidural to try to give me some back.  It's super awkward trying to figure out if the feeling is coming back by wiggling my toes.  It's like trying to wiggle your ears when you don't know what it feels like.  You have to think "wiggletoeswiggletoeswiggletoes" and then ask someone if they moved.  They didn't want to just yank the thing out of my back because then it'd get the worse pins and needles feeling ever, and the pain of the surgery would hit me like a truck.  So we eased into it.  I was super excited once it finally came all the way back.

This time my roommate was an 18 year old girl named Ashley.  She had something quite bad.  Her side of the room was papered with posters and teddy bears, and she could do a lot of the stuff by herself without the nurses help, not because she wasn't that bad but because she was used to it.  She was really nice, and it's another case where I feel much worse for her than I ever will feel about myself.  I really hope she managed to get out of there and got to start her life.

This time I had a nurse name Julie.  She was sooo nice.  We chatted and stuff, she was really attentive.  Sometimes you get nurses that care so much that you think they should be the role model of all nurses in the world, and Julie was definitely one of them.

The fourth day in, I got moved to a four person room because they needed our room for an isolation.  Ashley had to take all her stuff down and pack up so she could put it up in whichever room she was in next.  My parents asked if she wanted help, but she said she was used to it, so she did it on her own.  They wheeled me into my new room and I transferred onto my new bed.  Being in a four person room is completely different from a two person room; it's more like waking up in the recovery room, but then having to stay there and sleep there.  The kids around me were a lot younger, so I needed to have lights out pretty early and got a pretty sucky sleep.  The next day I got to meet a physiotherapist, who taught me a little more of the transfer board and made sure I could actually transfer myself and move myself in a wheelchair well.  Then I was allowed to go!  I got the IV ripped out of me, and we rolled our way to the front of the building where dad had pulled the car around.

Getting into the Opaz was a little difficult, but the seats are pretty worn in and low, so it wasn't ridiculously hard.  I found it difficult to sit in the car though, because my hips were still extremely sore and I hadn't ever sat up for that long a time.  We did it though, returned the chair (mine was at home), and drove off.  It was a pretty rough ride for me, but no where near as rough as the brain surgery.  Once we got home, we took out my chair, I transferred into it, we rolled me up the ramp and into the house, and then tucked me in to my guest room bed.  Then I went to sleep.