Wednesday, July 27, 2011

Are My Knees Bent? Cause It Kinda Feels Like They're Bent. No? Okay, My Bad.

Leading up to the hip surgeries, we had a lot of preparing to do.  I would be wheelchair bound for a little while, so we needed to get some sort of lever/pulley system rigged up to get me out of the house.  Just kidding, we just used a ramp.  However, getting ramps for people in wheelchairs is harder than it sounds.  We got this woman to come in and measure whether or not a ramp would work in our house.  Apparently you need to have a certain ratio of height vs. distance (or slope, for people who are a little quicker than me) and our house definitely doesn't have that.  We were like 'oh no, guess I won't be able to leave the house, thanks for you help' until she left.  Then we went out and rented some metal ramps and set them up ourselves.  My dad, being dad, constructed a wooden box that we put in the middle of the garage to use as an intermediate level so that I didn't just go flying down the ramp and plummet head first into the floor.  They then put the two pairs of ramps on it so that it was just wide enough to fit my chair.  It was pretty awesome, and I kind of wish we got a picture of them (and a picture of Kyle when he tripped over them on the way to get a beer, because that was hilarious).  Anyway, good work Dad.  We also rented a wheelchair for me, and bought some crutches.

The next step was more complicated. I had to move from my room upstairs to the dining room/Mom's office/part time guest room.  The bed was already down there, but they pushed it against a wall and put a TV in so I wouldn't be lonely.  Then they put all my sheets on it, and my teddy bear, then shoved me in and locked the door.  No, they didn't, but it kind of felt like I wasn't ever going upstairs again so they may as well have.  We were now all pumped and ready to go.

On the big day, Mom, Dad, and I walked into the Children's and went upstairs to the Day Surgery unit.  Once again we went through the questions, and we sat down to play some crib.  And we waited.  And waited.  I wasn't even allowed to chew gum, and I was extremely hungry.  The waiting room slowly cleared out; the young kids always go first for surgeries because they can't handle the hunger and stuff as well.  After a little while, we found out that some kid was carsurfing and came in for emergency surgery.  Once he was done getting fixed, it was our turn.  So we sat and waited, and got angrier and angrier.  Don't get me wrong, I feel bad for the kid.  The truth is, he shouldn't have been carsurfing.  I was super upset because I didn't ask for what I was there for, and I had to sit on hungry pins and needles because he decided to throw caution to the wind and failed.  I stick by this thought, as mean as it is and as bad as I feel about it.  Anyway, the situation was worse than we'd figured (or the doctors, for that matter) because around 6, when I was the last one waiting in the room, my surgeon came in.  He was working on this boy too, and it looked like he wasn't going to make it.  My surgeon was still in weirdly high spirits though, and when we asked him why he told us that the rods that were going in my hips were actually flown in from Ontario.  He'd never done this surgery before and he was all excited about it.  I remember my Mom saying "I hope you have an instruction manual!" and him laughing, and then her saying "no, really.  Make sure you have an instruction manual."

Anyway, because of that kid, I got pushed to getting surgery three days later, on the following Monday.  On the bright side, I would get to bypass the waiting room stuff because I was getting admitted to the hospital the night before.  The weekend went by relatively fast, and on Sunday night I checked in for another night in Hotel Children's.  It was weird walking in and feeling relatively healthy, yet still having to climb into the hospital bed and get my vitals checked.  My boyfriend came and saw me while we were there, so him and I went for a walk around the hospital a bit.  After a while, he left and my parents left and I was ready for lights out at 7pm.  Okay, maybe not that early, but being a children's hospital, you can't really have a party in one of the rooms because there's kids sleeping next door.  I spent the night reading and trying to not panic about the next day.  I slept pretty well, especially considering my sleeps before later surgeries.  That seems to be something that gets worse with age.

The next morning, my parents were there again.  They told me they loved me and all that jazz.  A nurse came to get me, and together we walked to the back elevator that they take the beds down in.  I wasn't allowed to wear my glasses, so everything is a little foggy (ha).  I said bye to my parents, and walked with the woman to the operating room.  I climbed up on this tiny freaking bed and was positive I was going to teeter off the edge.  I got gas again, which is always fun, and off we went.



When I woke up in recovery, a nurse asked me if I was going to get sick.  I said 'yep', half leaned up, said 'nope', and laid back down.  I was freezing.  They put this blanket on me and filled it with hot air, it was actually pretty awesome.  They asked if I was doing okay and I said yes, and then asked one of the nurses if my knees were bent.  She kind of gave me a weird look and said 'no.' and I said 'ok, cool, thanks.'  I couldn't feel my legs.  I was positive that I was actually now paralyzed from my waist down.  I accepted this as truth without asking anyone, and spent the rest of recovery planning out my new wheelchair-bound life.  Then they towed me back to my room.  This is where the nurses informed my family that I had an epidural in, which no one had warned me about before.  I couldn't even wiggle my toes or feel anyone touching my legs.  Kinda freaky when you don't know why.  The bandages I had on felt massive when I touched them, but I found out after they were only about a half centimeter thick.

I did way better with this surgery as far as nausea went; I didn't throw up once.  The only problem was that shortly after I woke up, I decided it was a good idea to have some licorice.  I love red licorice, but I still had the taste of the anaesthetic in my mouth, so that's what it tasted like.  It took me a while before I could eat it and not taste that.

The doctor came and told us the surgery was a success, as far as we could tell.  The rods went in and I didn't die, so I guess that's really all I could ask for at the time.  We wouldn't know if the rods managed to revascularize the joints for a while, so we were to just play the waiting game and focus on healing.

Sunday, July 24, 2011

Well, The Only Thing You Have To Be Stressed About Is My Doctor's Foot Up Your

One thing I've neglected so far in this story is my social life.  By this point I'd managed to get back into school.  I was taking English 30-1 in a "go at your own pace" class, Bio 30, Math 30P, and German 30.  Because of my headache and bone pain, I missed a lot of school.  I'd learned how to drive at this point, so I inherited the Opaz and would drive my friends, or drive on my own to school.  I needed to do this because at any point during the day I might have had to leave.  English was really fun for me; I was using poetry to take my upsetness at my whole situation out, and I've always loved reading.  Other than when I would drive my friends to school, I wouldn't see them an awful lot.  I was still pretty upset about them abandoning me during the brain surgery, so I'd already realized I couldn't count on them for much other than someone to talk to at school.  I'd gained my weight back by this point because I wasn't throwing up everything, so they were back to pretending nothing happened.

At some point in September or October, we went back to the neurosurgeon to talk about my still-there headache.  He said that it may have become a chronic headache, but it would probably go away.  In the meantime, I could take certain medications to try to relieve it.  I was up for anything, so they put me on an anti-epileptic medication called Gabapentine.  I was supposed to ween up to two pills three times a day.  The day after the appointment I started taking them, but I accidentally forgot to ween up and took two pills at lunch.  I went into German and told my teacher, who thought it was hilarious.  I ended up being high as a kite from it, and he decided that I would get to read a section of the textbook.  I don't know if you've ever tried to speak German, but doing it while hoped up on anti-epileptic medication is impossible.  My teacher thought it was hilarious and everyone laughed the whole time.  The only problem with this medication is that it was known to change the mood of people.  I didn't notice at the time, but I started getting really antisocial and getting really mad about the things my friends would say or not include me in.  My parents talked to me about it when I started crying a lot, and we went back to the neurosurgeon.  At this time, we decided to add a neurologist to my team of doctors, so she sat in on this appointment.  My parents were trying to explain that the drug was negatively impacting my life when I burst into tears and started telling them that not only was it making me hate my friends, but my headache was still there, just as bad as before.  I'd never cried in a doctor's office before, no matter how bad the news was, and I haven't since.  They agreed that I needed to get off of it.

After that, I was put on Amitriptalyne.  Some people actually use this as a sleep medication, but it's actually an anti-depressant.  However, to have it work for depression you need to take 200mg or more, and I was no where near that.  I was to ween on it and up it.  This medication went pretty well, and I evened out emotionally pretty quickly, though being in grade 12, the damage was already done between me and my friends.  There ended up not only being zero support from them at this time, but they added a ton of stress on me.  They made me feeling bad for being in pain and for being different. I couldn't really stop talking to them though, because I wasn't at school enough to start making friends with other people, and I needed someone to talk to while I was there.  I decided I was just going to have to suck it up.

As I got towards the end of the first semester of grade 12, I started talking to my brother's friend a lot.  He was a nice guy and had actually liked me for a while, so we started seeing each other.  I started hanging out with him and his friends (when they weren't at the bar, obviously, being that I was only 17 and wasn't really one for underage drinking, another difference between my old friends and I).  He was very understanding about my health problems, something that's apparently extremely rare in people.

As we crawled towards the hip surgery date, we went to see my orthopedic surgeon.  He decided to refer me to a rheumatologist (a bone doctor who deals with things like arthritis and other bone related diseases).  We went into that appointment and met her.  She, like my other doctors, was amazing and super nice.  She's would always compliment me on my heels.  They decided that soon I would have to do a drug infusion which would hopefully make my body stop eating the dead bone, which would maybe reduce the odds that my joints would collapse (where the dead bone and possibly the cartilage around it crumbles apart, leaving a big gaping painful pit of dead bone hell in it's place).  We agreed, but I'd have to wait for my hips to heal from the upcoming surgery to do it.  In the meantime, she suggested we go to a psychiatrist in the hospital to help deal with the stress this was putting on me and my family. We agreed, because we thought any help would be good help.

We were wrong.  Apparently there are people in the medical industry who actually suck at their jobs.  We went to one appointment with this psychiatrist.  Mom, Dad, and I went to see her together, and about the first 50 minutes of the hour long appointment were rocky.  Then she decided to open her big stupid mouth and say "What do you have to be stressed about?"  I'm pretty sure we walked out.  In fact, we said that we won't be going back to her ever, and then walked right into my rheumatologist's office and told her what this woman said.  She wasn't pleased.  It took me a couple of years after that to feel comfortable with going to any type of psychological help.  It's amazing how a bad apple can ruin the batch.

I started the second semester of grade 12, and had only one class.  I knew what would be happening as far as the surgery went, so I took only what I needed to graduate school with my year.  We went to get my graduation dress in about January because I wouldn't be able to shop for or try on a dress until about two weeks before actual graduation.  I felt like it was the calm before the storm, or like I was walking for the last days of my life, knowing it was only short term.

Thursday, July 21, 2011

If You Can't Handle The Heat, Run Away And Get Someone Who Can

The hardest part of getting the bone disease at the time was that I wasn't able to see Kyle graduate.  My grandparents came in and had to stay home with me while my parents went and watched him graduate.  I know that they had wanted to see him graduate as well, so I felt like a giant douche sitting there asking them to get me drinks while they were missing out on their first grandchild's big day.  Before they left, Kyle gave me a hug and said "Don't worry, high school graduation doesn't matter.  It's the University graduation that's important, and you can see that."  I cried when he said it, and I'm tearing up now as I write it.  It takes an amazing person to play down something so big because they know how much it means to another person that can't see it.  Once they left, my grandpa handed me the remote and told me to turn it to whatever, and my nana sat in the other chair and started reading.  Every so often, they'd ask how I was doing, if I needed anything, if I was okay, and they'd always make sure I didn't have to get up.  They're really great, and it's nice to know that if we need them they're there.  I have an awesome family.

At this point it was still extremely hard to walk.  It took a long time for my pain tolerance to go up, and even longer for my knees to stop hurting so much.  Mentally I got used of it, and I accepted the fact that I was going to have this for the rest of my life.  I knew I had to keep fighting, because I had so much in life that I wanted to do, and I couldn't let something, even something as serious as this, hold me back.  Life goes on, and if you focus on what you're missing, you don't go with it.

The appointment with the orthopedic surgeon came pretty quickly.  We came into the waiting room, a solid 30ft from the neurosurgery waiting room, and we sat down for a long wait.  I'm pretty sure this was the time that we found all the magazines for university, colleges, etc. in the waiting room.  I'd wanted to be an engineer since grade 8.  We went through them half-heartedly, mostly wasting time (though it was good I did, because it helped me out later in the story).  Finally it was our turn.  We went into the examination room, and I climbed up on my throne.  I'd gotten an MRI at some point in between then and here, so my images were up on the screen.  A woman doctor came in and introduced herself, then looked at the screen.  Then she goes "Oh.  Oh my god.  This isn't good.  This really isn't good."  She looked at us and said "this isn't good."  We all just looked back at her with a look on our faces like 'thanks, tips.'  She turned and went running out of the room.  We all looked at each other, a little surprised at this.  I'm not really used of people running from me.

A few minutes later, in walks a man orthopedic surgeon.  Apparently the woman before got super intimidated by my awesome bones and got someone else to come and look after them.  He was a lot more positive about everything, and didn't make me feel at all like an alien just jumped out of my MRI.  He started telling us (really excitedly) about this surgery that we could do, where we put tantalum rods in my hips in an attempt to stimulate the blood flow to the head of the joint.  They hadn't done it in western Canada yet, but they did in Ontario an so far they'd had good results.  We were pretty skeptical, and justifiably hesitant.  He was really pushing for it, not because he wanted to do it, but because he really thought it would help.  We said we'd think about it.

We had an appointment with my neurosurgeon a little bit later.  While we were in the appointment, the orthopedic surgeon knocks and comes in.  He told the neurosurgeon about what he wanted to do, and together they tried to persuade us. Then he told us that he was going to make an appointment for us with a really well known orthopedic surgeon in Foothills to get his opinion on the situation.  We agreed to go, mostly because the whole thing was hilarious.  We accepted and got an appointment with the guy.



Because of all this, we decided that we would indeed to ahead with the surgery.  It got booked for February of 2005, the last semester of grade 12.  At this point, I still had the headache.

Tuesday, July 19, 2011

At Least It's Pretty Much Empty Right Now

At this time in our story, the school year was winding down to an end.  I was coming to the end of grade 11 (which really isn't that great a feat), and Kyle was coming to the end of grade 12.  This, of course, means graduation, and diploma exams.  I was less interested in his diplomas (I'd actually done my Chem 30 diploma in the Fall semester, after an MRI, so they were really nothing new), but I was pumped about his graduation.  It's not every day that your only sibling graduates.  I used it as something to look forward to, to keep pushing towards even though I was still in pain.  Obviously my world doesn't ever work out how I want it to though.

I was about 7 days into my steroids for the meningitis when my knees started hurting.  They were too bad, kind of like how it might feel if you went running, except instead of running at a nice pace you stomp each step for an hour, and your knees start saying 'eff you' for the next couple of days.  By this point I was used to a little random pain here and there, so I thought nothing of it.  Sleep that night was really uncomfortable, the pain got a little bit worse and I was squirming like mad trying to get in a spot that would make it either hurt less or not make it hurt more.  I finally did, and got to sleep.  When I got up in the morning, it was even worse.  I had no idea what was going on, but I am fantastic at denial, so I decided I was fine.  I got through the day and went to bed that night.

That night was terrible.  Sometimes people will say they were up all night doing stuff, and usually that's an exaggeration; they probably got to bed at about 3 or 4 am.  I was up all night in pain.  I've always had insomnia, so when 2am rolled around and I wasn't asleep I wasn't very worried.  It was the same as the night before, but worse.  There were no positions where it didn't hurt.  I stopped looking at the clock after 2, because that always makes it worse.  I didn't realize how bad it was until the sun started coming up.

After I saw that the sky was pretty light, I chuckled to myself.  At this point I had already realized that I never seem to do things the way normal people do them.  I shimmied to the edge of the bed and leaned over the edge.  I used my arms to lower myself to the ground and started crawling to mom and dad's bedroom, dragging my legs behind me (which was probably better than dragging them in front of me).  I knocked on their door, they said come in, I opened it, dragged myself in, and said 'Hey guys!  I think we might need to go to the emergency room!'  We chatted about it for a minute or so, and then we all went to get dressed (I needed a little help).

We got to the hospital and got put on a bed immediately, either because of need or because there was pretty much no one in the emergency room at 8am.  They put some liquid Ketoralac in me before they even started an IV.  Then I got a bunch of tests done.  I'm not going to really talk about this part, because this is really the only point of my story that I've actually disagreed with what they did.

Eventually they realized something happened with the steroids.  To check, they asked me to have a bone scan.  I don't remember how long it was between the emerg visit and the bone scan (two days maybe? Actually it was probably the same day) but soon enough mom and I were waiting in the hospital for the bone scan.  First they have to put the radioactive dye in you, and then you wait a half hour, and then they scan you.  Mom rolled me in in a wheelchair (I still couldn't walk because my knees hurt so bad), and they gave me the dye.  We rolled out and went to the cafeteria for a half hour.  When we went back they told us they had to wait.  Apparently the girl in front of my was refusing to get her dye because she'd had an incident where someone had stuck a needle in her neck, making her justifiably afraid of needles.  We sat down on a couch outside the room (by we sat down I mean mom sat down, and I transferred from the wheelchair to the couch), and Mom tried to get me to go to sleep while we waited.  Eventually they called us in.

I got to lie down on this huge table that had a massive camera over it.  They gave mom a chair beside it and put some cartoons on the TV (the perfect thing to occupy a 16 year old's mind).  And then they taped my legs together.  If you've seen me now (and I know some of you haven't), if you know something is hurting me you'll see me squirm.  I try to be subtle about it, but I tend to crack my joints or move as if I'm stretching a muscle when I'm hurting.  When they taped my legs together and told me not to move, it was as if a tiger was seeing if my face would fit in it's mouth without me being allowed to flinch.  Mom was holding my hand, I was trying to hold back tears...it was terrible.  The camera was being moved around my body, and it took an insanely long time.  At the end, I was exhausted, and both Mom and I were in really low spirits.  Whenever she sees me in massive pain it gets her down.

We were rolling back towards the emergency room when mom sees a computer on it's screen saver.  She's like 'oh look!' and points at the image of two cute kittens hugging or something.  At the same time, we both go 'awwwwwwwwww.'  Then the image changed to a picture of some horses.  At the same time, we both go 'oh.'  Then we both start laughing.  Like mother like daughter!

We roll into the emergency room and wait.  Some doctor, I can't remember who she was, some on call person, comes out to talk to us.  She tells me that I've gotten a rare side effect of the steroid called Avascular Necrosis.  This is where the blood flow to the head of the joint has stopped, causing the bone at the head of the joint to die.  Eventually, the body eats the dead bone, which can make the joint collapse.  The "hot spots" that showed up in the bone scan were my knees, hips, and shoulders.  I can tell you now, after having had it for a few years, that I also have it in my elbows, wrists, ankles, some fingers and some toes.  The pain feels like bone on bone pain, or like a person sticking a needle into the raw part of the bone.  That's actually pretty accurate, the feeling comes from the dead bone rubbing against the live bone I think.  If you've never had the pleasure of that happening to you, imagine the feeling of someone pinching a really small amount of skin, you know the tiny amount that hurts the most?  Then imagine that inside your joint.  It's a permanent thing, and they don't have a cure.  She leaned in and told me that there's a chance I won't be able to walk.  Cue the world crashing down around me.

She left and Mom and I sat there in shock, looking at each other.  This was pretty bad news.  Then my neurosurgeon comes trotting down the hall with a big smile on his face.  He says hi and starts joking around with us.  We told him the big news.  I don't really remember how he put it, but he made it seem nowhere near as serious as the other doctor had said, and made it pretty clear that I was going to be walking again pretty soon.  He asked where it hurt and I told him, right under the kneecap in both knees.  He goes "here?" and squeezes my right knee on either side of my kneecap.  I half laughed, half died (oops I mean cried), and he starts laughing, and mom goes 'stop!'  In hindsight it was pretty funny.  He told me he was refering me to an orthopedic surgeon in the children's.  In slightly higher spirits, life went on.  I still had the headache, all day every day.

I'm going to take this moment to tell you that as of right now, I have nothing against my doctors, and I didn't, don't, and never will want to sue these people.  It's true that there were complications with the brain surgery that caused my spinal cord to be inflammed, but that was my own body that caused that complication, not the doctor.  It's also true that I got a side effect that they did know about and didn't tell me about, but had I not taken that drug, I'd be dead.  They weighed out the need for the drug against the possible severity of the side effects, and the need won.  I'll never feel resentment for that, and I hope that none of you will either.  When it comes to my health, if I'm in a do or die situation, I'll almost always take the do.

The story continues...

Sunday, July 17, 2011

This Is Spinal Tap

Being home from the hospital felt great.  It felt like it had been years since I slept in my own bed.  My head still hurt really bad, so I had to have extra strength Tylenol every four hours and extra strength Advil every six.  Mom would make sure, and would literally wake me up at night to give me some.  This may sound excessive, but if I didn't have it I would wake up from the pain and have to wait for more pills to kick in.  I would nap a lot.

School at this point wasn't really feasible.  I was still in grade 11.  I was really lucky they had those workbooks in most of the classes, because I was able to do most of the classes at home.  The school knew about my situation, so my teachers were all extremely understanding and were willing to help me finish the semester.  Right when I returned home and found out that I wasn't able to finish school, I was pretty upset.  I wasn't going to be able to see my friends everyday.  I'd already gone almost two weeks without seeing them, and I was needing some support from them.  So I tried to get some of them to come over.

First a couple of guys that weren't in my main group of friends came over.  Before they got there, I was really wanting to feel up to seeing people.  I got dressed, put my makeup on, everything.  Then, about two minutes before they showed up, I threw up again.  It was the same thing as always, where I had to flex every muscle in my body in order to handle it, and then after I was extremely exhausted again.  Mom put me in her bed and laid me down with a cold washcloth on my forehead.  When my friends got there, Mom told them to wait a few minutes in the living room because I wasn't doing great.  Then she helped me down the stairs (which I almost fell down).  They weren't here for that long, probably because I looked like death on a couch, and after they left I had a long, awesome nap.

A couple of days later, two of my best friends came over.  They brought a couple of things to make me feel better, like a giant card that people signed, and a six pack of mini-cokes.  It went well, until the end where they told me that I had gotten too skinny and looked like a skeleton, so they didn't want to see me anymore because it scared them.  That was a pretty big shock to me, and that's actually the reason that I find it really hard to get close to people now when I'm going through health things.  These people were my best friends, the ones who promised they'd be there for me, and they told me that they were scared of me and didn't want to see me anymore.  It hurt worse than the headache.

Once again, I'm extremely happy for my family, and for the friends of my family that supported me so much.  I'm not going to name names for privacy reasons, but I really couldn't have done it without all these amazing people by my side.  My parents and brother (Kyle) and I all got really close.  I remember Kyle coming home from school and playing guitar with his amp on while I was sleeping in the room next to him.  I'd always be like 'aaaaargh!!!', but I found it a little funny, and he was actually good at it so it wasn't so bad.  He could have been trying to learn to play the violin.  It's the small victories.  When I would get upset and cry, at least one of them would always be with me, crying with me and trying to make me feel better.  We even stopped eating fish, because for some reason the smell of salmon cooking would make the nausea even more pronounced.  Thank god that didn't last long, because my family cooks a mean salmon.

Shortly after I got home, my mom noticed that I was still throwing up a lot, and was just generally not doing well.  This is usually how it works for me; I don't ever notice if I'm looking terrible or am doing worse than I should be, someone always needs to tell me.  So Mom decided we were going back to the hospital.

We walked back into the Children's, and instead of taking me to the emergency room, Mom dragged me right into the neurosurgery clinic and told them that my surgeon needed to see me.  They said okay (because no one will get in Mom's way if she's on the warpath) and sat us down in the room.  This was a pretty funny appointment, because I mentioned the bed being kind of high and Dad tried to step on the little thing to make it go down.  Instead of going down, it made this huge bang and did nothing.  Dad then tried to figure out what went wrong and tried fixing it (I get this from him, by the way).  We had to make him sit down so I could get on the bed before the doctor came in.  Once he came in, he took one look at me and said "somethings wrong."  He tried to take my temperature, but couldn't work the thermometer (it was also pretty hilarious).  Eventually they just decided that it was time to admit me and get this fixed.

I was put back in the neurology ward of the Children's (unit N, I think).  They had to start an IV on me again.  To do this on kids, they sometimes freeze it with topical freezing, but it can make the veins hide, so I didn't get it this time.  Instead, I got a warm towel wrapped around my arm for a while.  They came in and tried to start an IV.  They started trying in my hand.  Every time they put the needle in, the vein would roll or dive, and they couldn't find it.  They tried three times before they decide to wrap my hand again and call someone else (they can only try three times a person).  That person came in and tried it on my hand closer to my wrist.  They got it! She asked if it felt okay, and I said yes, so she taped it and walked about.  About five minutes later she came back and I told her it was a little sore, so she unwrapped my hand and my wrist looked like a balloon.  The vein had blown.  They took it out and got ready to try again.  While they were setting up, I asked if it was okay if I slept while they tried to put it in again.  The nurse looked at me like I was crazy, but said yes.  One the sixth try, the IV finally stuck and I was allowed to sleep.

The next day, my surgeon and another guy came in and told me I was getting a spinal tap.  To do a spinal tap, they have to freeze your spine, and then put a tap in between a couple of vertebrae and let the spinal fluid drip out.  If the guy misses, it hurts like sticking a giant needle in your spine without freezing.  Probably because that's what happens.  So we got all prepped.  I had to push my back out to separate my vertebrae as much as possible.  I had to put my feet on Mom's feet, which were on the bottom bar of my lunch table tray (I swear I'm shorter than half the kids in that place) and push as hard as I could to get them separated enough.  He put the freezing in first.  I'm not sure how to describe how painful it was.  It hurt at the spot he put it in, and then as the fluid moved in me the pain spread up and down my back, and all over my head.  Once that kicked in, I had to push back again so they could tap it out.  Thank god, he didn't miss.  My legs were shaking from pushing so hard for so long, because it takes about a minute to tap it all out.  I'm sooooo happy I couldn't see the tap, because Mom said it literally drips out and that just sounds disgusting.  They went off and tested it.  It came back saying I had non-bacterial meningitis.  This happened because my spinal cord became inflamed.

As I was there, I was told I couldn't take Tylenol or Advil because it hid my fever.  After not taking it for a few hours, my temperature went up to 39 degrees, which is pretty close to hyperthermia (the opposite of hypothermia).  We had cold washcloths papering my face, and we got a couple of fans brought in to cool me off.  I, of course, looked freaking awesome.  I was given a steroid, Decadron, to help get rid of the meningitis.  After my fever went down, I went home and felt about a zillion times better.  I had more energy and I wasn't throwing up as much, and my headache was actually feeling better (though it didn't go away completely).  I was put on a 21 day round of this drug, and you have to ween up onto it, and then ween down off of it, which is included in the 21 days.  At this point it was about half way through May of 2004.

Thursday, July 14, 2011

Please Move The Banana

I remember a few things from the first couple days in the ward. The faucet was dripping in one of the rooms, and I woke up just long enough to tell them to tie a face cloth from it to the bottom of the sink. They did and it stopped, and I was immediately back to sleep. Another thing I remember was the menu. They gave us the meal menu every morning, and we always optimistically filled the whole thing out, even though we knew I wouldn't be able to hold anything down except water. Someone had given me a fruit basket as a get well present (which was really nice), but my sense of smell was ridiculously heightened, and I couldn't take the smell of the banana. I had to get my parents to take it out of the room.

As the days went by, I got progressively better. I still threw up everything, and every time I did my headache would get so bad that my skin would go bright white, then bright red, and I'd have to tense all my muscles because it was the only thing I could do against the pain. I could hold water down pretty well usually, except for one night where they gave me too much codeine and the water came back up, still cold. One night I had watermelon and it stayed down, so I got super excited about it and had a ton, and then threw it all back up again. I couldn't eat watermelon for years after, and I still get a little cautious when I see it.

My mom slept in a chair beside my bed every night except for one.  That night my dad stayed, and got so angry at the nurse (actually, this was the night of the codeine incident), set her straight, and then sat down and watched over me like an angry wolf watching over its cub.  It was pretty funny.  My entire family was there a lot, even Kyle, who was in grade 12 at the time.  I had a couple of people visit me, including my family doctor and my grandparents.  My friends, however, didn't come once, and didn't even try to contact me until I was well enough to check my phone and text them to tell them I was alive.  Even then, they decided that was good enough and they didn't need to visit me.

One of the highlights of my stay in the hospital that time was when a volunteer brought a laptop in for me.  I was super into The Sims at that time (I hadn't heard of WoW by then) and so I actually sat up for the first time for about 15 minutes so I could play it.  This was probably about day 5.  It was a really big step for me, and after I said I was done I laid down completely exhausted.  The next day the nurse told me I was going to try to walk.  I was pretty against it, but she pretty much dragged me out of the bed and helped me walk around the room once.  I can't even describe what the headache felt like after that.  I've never had a migraine that's come close to the pain, so I don't really know what to compare it to.  After that though, I felt confident that the back of my head wouldn't explode when I got up, so I was ready to do more.

One of those days, my neurosurgeon came in and said that the surgery went well, and the nausea was because of that portion of my brain being too low.  He said he was pretty sure that my headache would go away soon, and if it didn't, they might need to depressurize some of my brain by putting a shunt in the side of it.  Neither of those things happened.

We were really wanting me to get home.  That kid that was in ICU with me that had the same surgery was gone after 4 days, and he was doing awesome.  On day 9, Mom got the nurses to feed me enough gravol to knock me out for 8 hours.  Every so often, she'd wake me up and shove some vanilla Boost into my mouth, and then would let me go back to sleep.  I wasn't awake long enough to throw it up, so by the end of the day I got two Boosts in me, which was enough for me to go home.

Car rides home from the hospital are always hell.  We put me in the front seat of the car that would eventually be mine, the Opaz.  My parents handed me an ice cream bucket and shoved blankets on top of me, and off we went.  I managed to keep my stomach in me the whole way home.

To sum this part of my life up, I went into the hospital expecting about a 4 day stay, to stay steady at 117lbs, and to be headache free when I left.  I was in there for 9 days, lost 11 lbs, and had a headache worse than when I went in.  However, I was alive, and therefore I count this surgery as a success.

Tuesday, July 12, 2011

Why Are There Scars On The Top Of My Head?

Before we get into the next part of this story, I'd like to tell you a little bit about the social side of my life up to this point.  As I said before, I had a pretty tight group of friends.  We became friends at the start of grade 10.  For the purposes of the story, I'm not going to mention their actual names.  I don't need anyone I used to know getting mad at me.

By the time spring break rolled around, my headache was about a ten out of ten on the pain scale (or at least what my pain scale used to be).  This meant I spent a lot of time at home in too much pain to go to school.  When I was there, my friends were pretty supportive.  One would offer me random pills out of his pill collection, of course in exchange for my own Tylenol 3's (I never took that offer), and another told me she was going to pitch a tent in my hospital room and would camp there for the four days I was supposed to be admitted.  I felt pretty good about them being there for me.  Before I went in for my surgery, I decided a bunch of my friends should go to Tony Roma's for a supper party kind of thing.  I made invitations, and titled it The Last Supper (something no one else seemed to find funny, but personally I still find hilarious).  Everyone came from that group of friends and another group of friends I had, and it all went great.  The day before the surgery, I promised to let everyone know as soon as possible and told them that if they asked at the front desk, they would tell them what room I was in.  I also told them I'd check my cell often while I was in there. They all promised I'd talk to them soon.

On the day of the surgery, Mom, Dad, Kyle and I walked into the Children's hospital and went to the second floor: Day Surgery.  They asked if I'd been sick in the last two weeks, and Mom quickly said 'Nope!' which was a flat out lie.  I'd had a cold which had just finished the day before.  The four of us sat down among the children and their families, and we started playing Cribbage.  One thing about crib, not to toot my own horn, but I'm pretty much the best person at it ever.  Just kidding.  I'm pretty good.  Kyle hasn't played it a ton, so we had to teach him how to do it.  Then we played team crib.

After an hour or two, they finally called me to get changed, once again, into the awesome hospital outfit that ties at the back.  We then sat down in the closer waiting area and they asked the usual questions.  They told me I was getting put under by gas, which I'd heard isn't as quick (it isn't, but it's a hell of a lot more fun).  Then we played more crib.  My family and I are extremely close, and this was one of those times that really stands out in my mind when I think of how awesome they are.  When it comes down to the hard parts of my life, my family is always going to be there for me.

Finally it was time for me to go in.  I said my goodbyes, assured them I was going to be okay, and walked into the operation room with a big brave smile on my face.  I climbed up on the bed, and the nurse who's sole purpose at the start is to make sure I don't freak out and run for my life introduced herself to me.  I didn't get any IV's or anything at this point, they were going to wait until I was under (something a lot different then how they do things now).  They asked me to say my name and birthday, and then strapped the mask on me.  The nurse started telling me lame Disney jokes, which I found quite hilarious.  Then I started up a conversation with her about how white the room was.  And then I told her I was going to take a nap.  That's all I remember, officer.

If you're squeamish, you may not want to read this part.  While I was unconscious, they drilled a brace around my head to hold it steady, and then flipped me over so I was looking down.  They shaved a one inch wide strip up the back of my head about six inches ish long, and then cut from halfway up my neck to halfway up my head.  To get to the part that they needed, they had to remove a 2.5 cm x 2.5 cm piece of skull, which is still gone now.  They cut through a bunch of muscle and stuff as well.  Because the tonsil was so big, they had to shave off part of my first vertebrae to get to it.  They then burned the tonsil down to how big they wanted it, and inserted a plastic graft to prevent it from getting bigger.  Part of the nausea part of my brain had actually shifted down too, so they had to "tinker" with it to put it back where it was supposed to be.  Then they sewed and stapled me back up.

From here it gets a little hazy.  I remember bits and pieces of the next few days, but the timeline is a little screwed up in my mind.  A lot of this part is off of what I experienced mixed with what I was told from my family.



I'm told I was in ICU for a few days.  I don't remember even being there for an hour.  I had a window beside my bed apparently, and I was in the corner of the room.  Every time I laid on one side for a while, the other side would swell up and I would have to roll over.  I threw up extremely often, and wasn't awake for a lot of it.  There was a kid one bed over from me who had the same surgery; he was in there for the allotted day and then left.  Good for him, and that taught me that I should never judge my health against someone else's.  I remember waking up one night and telling the nurse I needed to throw up, and she pretty much hit me in the face with the tray thing while she was looking away and yelling at a different ICU nurse.  That's actually the only thing I remember in ICU, the time went by pretty quickly for me because I was unconscious for so much of it.  Kyle wasn't allowed to visit me there, I think only one or two people were allowed to come in, and my parents were beside me every second they could be.

Eventually I got moved into the neurosurgery ward.  I don't remember the trip over, but Mom does and I guess she was over me like a hawk.  This paragraph is from what she told me.  I was in this room with a girl, maybe named Sophie.  She had Chron's disease or something, and she was termed a "frequent flier," something I was also called shortly after.  Mom said that she was pretty sick.  Apparently a while after my brain surgery we were in the MRI/CT/Ultrasound part of the hospital and we saw her, and I started crying because she wasn't better yet.  Thinking about it now, even though I don't really remember all this, I still get pretty choked up.  I hope she's better now, and I hope she managed to beat the terrible cycle we both were in.

Monday, July 11, 2011

Let's See Who Has The Bigger Head!

February 14, 2004.  My mom, dad, and I walked into the Children's hospital for my neurosurgeon appointment.  We still had no idea what was going on with my headache, and we thought this appointment was to learn what it was and discuss options.  We went in with high hopes, because we're pretty positive and awesome people.

We parked the car and went in the building.  The Children's hospital at the time was very colourful in a 70's seizure-inducing kind of way.  We sat down on these hard plastic couches and proceeded to make fun of all the people sitting around us.  Well, to clarify, Mom and I did, and Dad shook his head in an I'm-laughing-but-am-actually-so-embarrassed-that-I-know-you-two way.  It was super depressing around that area of the hospital because all the children with brain conditions and stuff are there, and a lot of the people are pretty sad.  Well, I should say the parents are pretty sad, because the kids always seem to decide that no illness will get in their way of being a kid, and are just excited to be able to spend the day playing with the grubby toys while they wait for the adults to talk.  The parents though always seem to feel that no one else could understand how terrible their lives are because of this, which is weird because if they all talked about it while they waited, they'd probably end up feeling infinitely better.  Just my opinion though.

Finally the nurse comes out and announces my name.  The three of us follow her in a giggly single file line into a room.  I sat down on the bed, my throne for the next few years, and my parents sat down in the chairs.  And then we waited.

Waiting for the doctor for things like this is like waiting to see whether you've attached a really expensive TV to the wall properly when you take your hands off for the first time, but that few seconds is stretched out for about a half an hour or more.  Your heart is trying to escape through your mouth, but it kinda got stuck half way and is instead trying to punch a hole through your throat. You have to sit there though pretending that you aren't about to have a heart attack and are the bravest person in the world, because no surgeon likes to walk into an exam room with a person curled in a ball in the corner with tears streaming down their face.  Believe me.  The three of us chatted and made fun of the room for a bit, all of us pretending to be super brave and having an awesome time.  And then he walked in.
I won't say his name just in case any of you are feeling super bitter about my health stuff and decide to take it out on him, but he has crystal blue eyes and is about 9 feet tall.  Even dad later admitted that this guy is "dreamy" (I'm not removing that, dad!).  He shook our hands and sat down, and proceeded to excitedly explain what was wrong.  He showed us my MRI and was taking measurements and everything on the pictures, clearly fascinated by this whole thing.  I was momentarily distracted by the fact that I was looking inside my own head, but managed to focus.  I had something called Ciari Malformation 1.  My brain tonsil was too large, causing the spinal fluid to not flow around my brain.  They usually do surgeries to correct this if the tonsil is 5mm (1/5" or something) too big.  Mine was 19mm too big.  It was so large that it was coming down into my first vertebrae.  The typical symptoms of this is a headache when you cough or sneeze, because of the extra pressure.  Mine, a constant headache, wasn't anywhere near typical, and he said it was "significant" and "the worst case he's seen in a pediatric patient" and other encouraging words about my massive brain.  Being us, of course, my parents immediately started making fun of me for having a big head.  We weren't really using humour as a way to hide that we were scared, we were just being us and finding the humour in the situation.  The doctor and his nurse didn't really know how to react to this, though throughout our various meetings in the future he began to join in.  He explained the surgery (which I will explain later in the story), and asked if we had any questions.  My parents asked a couple, none of which I remember, and then it was my turn.  I asked what the odds were of me dying.  I'd never had surgery before, and this seemed like a pretty thing in my mind.  I was assured that the odds were quite slim, but that just told me that there was some chance that I could.  That freaked the heck out of me.  Although, if I didn't get the surgery, it would kill me, so I didn't really have a choice.  I tried to focus on the idea that my headache would be gone after.  At this point, the doctor measured my head (I was thinking he was trying to figure out how big of a jar he would need to put my head in after I died) with this tape measure thing.  My parents then asked if we could measure their heads to see which of us has the biggest head.  Turns out it's me, then dad, then mom.  We later measured Kyle's too, but I forget how his placed.  Bigger than Mom's freakishly tiny head, anyway.

At the end of the appointment, we were given a date for my brain surgery, April 12th, 2004.  It was the first week day of spring break, and I would be recovered and back to school by the end of the break.  We left feeling hopeful, giggly, and scared out of our minds.

Sunday, July 10, 2011

It All Started When...

Hi, I'm Kelli, and I have bad health.  I've been having problems for eight years, and in this time I've found the hardest thing is being the only person I know with them.  I didn't find support groups, and no matter how supportive my family and friends were, I still felt ridiculously alone.  I'm writing this blog to not only try to get my thoughts and feelings about it out, but also to have a place on the internet that other people with bad health can relate to, and to hopefully help them to not feel alone.  If you're reading this and have bad health or are somehow affected by someone else's bad health, please read on, and suggest it to anyone that you know that may need some support.

It all started with a headache.  I was in grade 11, and it was the start of the school year of 2003.  I had a small group of close friends, and at the time I thought nothing could come between us.  After having friend troubles in junior high, I finally felt like I fit in.  I hadn't really had headaches before, but my dad has had migraines since he was 3, so I figured genetics finally just kicked in.  Having never had headaches before, I didn't find it weird that I actually just had one constant headache.  It was a pretty low pain level, but I woke up with it, spent my day with it, and went to sleep with it every day.  It wasn't bad enough for me to take more than a couple migraine tylenol's once in a while.

As time went on, my headache started getting worse.  It started getting pretty bad quite quickly, and my parents told me they wanted me to go to a doctor.  I went to my family doctor, and she suggested several things: massages, a mouth shunt for sleeping, acupuncture, etc.  We were of the opinion that the headache was caused by stress, and my tight muscles and teeth clenching while I slept were some symptoms of it.  We thought that if I took steps to relive these symptoms, it might help my headaches.

The massages were extremely painful.  We decided I should go in for an hour, because my back muscles were so tight that my back felt like a brick wall.  I would go in, tell the massage therapist to dig, and then clench my teeth and get through the hour of extreme pain.  At the end of the hour, my head hurt more.  I would leave the massage looking like I just went through an hour of torture, but would always tell my Mom (who would always come with me) that it felt great, and I felt so much better.  My mom is a smart woman though, and knew I was lying my butt off.  We stuck with it a couple of times, until the massage therapist told my mom that an hour was too much for me.  We decided to cut it back to 45 minutes, though it still didn't really help.

The mouth shunt was hilarious.  If you've ever got some sort of mouth piece, you know the process of getting it fitted.  They put cement around your top teeth, let it dry, and then rip it off.  It feels like it's going to pull your teeth out.  Then they do it on the bottom.  After a couple of weeks and a ridiculous amount of money, you get a plastic strip that's formed to your teeth.  When you have it in, you sound like you have a massive slur. And even though I couldn't really close my lips and drooled a lot with it in, I looked pretty damn attractive.  I know Mom and Dad only laughed out of jealousy.  I used it for a couple of weeks and gave it the ole' college try, but at some point every night, I would take it out and put it on the other pillow on my bed.  As you can probably guess, this did absolutely nothing for my headache.  I took this attempted method as a lose.

The acupuncture is something I'll never do again in my life. I have nothing against needles, with everything I've been through I welcome them as an unpleasant old friend.  I went in with an open mind, told the guy why I was there, and laid down on the bed.  He then did what he was supposed to do, stuck about 20 needles in me and left the room.  I remember the smell of the antiseptic stuff, the dim lights of the room, and the noises of the store outside.  He'd gotten only one spot that caused some sort of painful twitch, so it wasn't too bad.  Afterwards, I was told to come back in a week.  It didn't work, but I thought it might be one of those things that works over time, so I stuck with it.  I came back and told him it hadn't worked so far.  He seemed to take this as a challenge.  He stuck about 30 needles in me this time with a bit more force than before, and this time he got a few spots that gave me really painful twitches.  At the end, I was once again asked to come back in a week.  A week later I came back and once again told him it didn't work.  This made him angry, so he decided to get a little creative.  He stuck one between the nail and skin on one of my big toes.  Let me tell you, this isn't a pleasant experience.  After making sure it hurt, he decided to put one in my ear.  Then, once it was in, he decided that wasn't good enough and twisted it.  He left the room only when my salty tears were running down and hitting the spot that the needle was in.  The worst part of it was the fact that it didn't help, and that was all for nothing.  He told me to come back, and I was like 'oh yeah, I'll call when I check my schedule, yayy' and then ran away and never came back.  I still have nightmares about it.

Once I got through all of this, I went back to the doctor and said it wasn't helping.  She decided to refer me to a pediatrician who specializes in headaches.  I was still thinking I was just getting some weird migraine thing, so I wasn't overly worried.  My dad and I went to the pediatrician's office a little while later.  I had never had anything super worrying up until then, so I felt really uncomfortable sitting in this office with all these kids running around, some with obvious health problems.  I remember noticing the Cancellation Policy sign for the first time, saying that it was really difficult to get an appointment, so cancel if you need to so other people could get an earlier date.  I found it weird because it really didn't take me that long to get in.  In fact, I think it was less than a month.  I decided luck was on my side, and it didn't occur to me that maybe I got in because my problem was a little worrying.

We went into the office.  They asked a bunch of questions about my dad's migraines, and about my headache, and did a couple of tests.  Now, looking back on it, they were pretty standard tests, but at the time they freaked me out a little bit.  They told me I needed to get a CT scan, and that would give a little bit more information.  I was scheduled to get one at the Children's hospital shortly after (it wasn't more than a week later, though I don't remember how short).  This was still a little worrying to me.  I've never broken a bone, and before this I hadn't gotten any tests for anything before.  I was one of those kids who'd brag that the only time I was in a hospital was when I was born.  Ah, the innocent days.  Regardless, my family and I were still thinking that it would be fine, so we kept a positive attitude and I felt okay.

The day finally came for the CT scan.  My mom and I went to the Children's hospital, and I was told to lay down on the little cot that went into this massive doughnut shaped machine.  Mom came in with me, which is good because I was so intimidated that I could have thrown the lead apron I was given at the nearest person and thrown a tantrum.  The machine had little stickers all over it, and, being a normal 15 year old, I told mom how funny it was that they thought those stickers would make a kid feel better.  Then I started thinking about how cute the little stickers were and about how much I hoped I'd get a lollipop at the end.  I went into the machine and they started doing the test.  This is by far one of the least stressful tests I've had, though at the time I was terrified.  Once it was over, I was extremely happy.  I thought I was done, my headache would be fixed and life would be good again.  Once again, I miss those innocent days.

When we got home from the CT scan, there was a message saying that I needed to go for an MRI immediately.  I remember us all laughing kind of nervously, because they don't tell you what's wrong, and everyone knows the wait times for those tests.  There wasn't really enough time between the tests for us to get too worked up about it though, because my MRI was the next day.

The test was once again at the Children's.  We went in and I got changed into those insanely attractive hospital gowns and pants.  The MRI is more terrifying than the CT scan by about a zillion.  Mom took my glasses from me because the machine would swallow them and not give them back if I brought them in.  I laid down on the bed, and they proceeded to strap me in for the test.  Being that it was a head MRI, I got the camera strapping my face down, and the whole thing got locked in.  I had headphones on so I could listen to a CD, and I was handed a little squeeze thing to squeeze if I panicked.  All in all, this test was looking pretty fun!  Being that the test was quite a while ago, the simple head MRI took 45 minutes of not moving and minimal breathing.  Mom got to stand in the control room and watch.  Those tests are extremely loud, but the CD drowned it out a bit.  I'm not claustrophobic, but I needed to keep my eyes shut so that I couldn't see the metal tube a half foot from my face and the cage and camera half a centimeter away from my eyes. I got through it though, and we walked out of the hospital feeling pretty good.  I once again was pretty sure that I was going to get fixed and all would be good again.

Shortly after, I got the phone call that I had an appointment with a neurosurgeon for February of 2004.  This was only six months after my headache started.  I had no idea what was coming for me.