Thursday, July 22, 2010

Quick Message!

Hello! Sorry I haven't left any posts lately, I have been super busy! I don't have a lot of time to write right now, so I will go quickly.

I am going to be lupus ontarios new face for lupus. I will be on the website, brochures, everything!
I am quite excited. I have been working really hard to spread the word for lupus.

Elizabeth (my sister) and I went collecting around the street to get sponsors for our lupus walk. In one afternoon of about an hour, we got $60.00. We were very happy. Its been too hot to collect since then, but we should be going back soon!

Its summer and I haven't been admitted to the hospital yet! I don't want to jinx it or anything, but I am sooo happy! Last summer I was in and out of the hospital for the whole summer. It was the worst summer of my life. I had the stomach flu, pnemonia, high blood pressure, everything! Argh, it was awful. This summer its been amazing! I have a small cough, but its probably allergies, and other then that, I am great!

I am lowering my prednisone!!!! I have been on prednisone for three years, since my diagnosis. was always on high doses. I was on 60mg, the highest I can go, for months. We have been working to lower it, and today, I am going down to 7.5mg!!!! If you don't know, lowering prednisone is very difficult. If you lower it too quickly, or too much of a dose, you can get sick again. Currently, we are trying to lower it 2.5mg every few months. Its a very slow, and time consuming process. I feel sick after lowering it for a few days, but I feel myself again shortly.

I have been working VERY hard on spreading word of lupus. I e-mailed Ganz (the company that makes webkinz, as well as other stuffed animals) and build a bear. It took a long time, and e-mailing them everyday for over a month, but I have gotten response from them. If I could get a registered lupus charity to e-mail the companies, they would consider adding lupus to their donations. Lupus Ontario is working on it! Hopefully they will approve lupus ontario, and we will get a lot of donations from them!

I guess that is all for now. I will try to start blogging more often!


Tuesday, May 18, 2010

As It Goes On


My mom came home from the hospital that night. I phoned my grandparents, to let them know my mom was in the hospital. They promised they wouldn't come down, but of course they did.

The doctors said it was a mix from the prednsione she was on from Florida, for an allergic reaction, and a panic attack.

She is doing better now, now that she stopped the prednisone (which happens to be one of the meds I am on)

MCR and I had a LONG discussion. I basically told her I was mad at her, and I didn't think she was a friend. I told her it was a one sided friendship.

She apparently didn't know I was being bullied (I was being bullied in front of her), and when she found out, on here, she started to make me a huge card. I guess to try to convince me to come back. Whatever.

She then read my blog, and read I found the new her disgusting, and her makeup disturbing. She felt embarrassed to talk to me. And so, pretty much broke off contact with me at that point.

I finally confronted her about it. She admitted to being a rotten friend. The creepy part was she didn't fight it. Usually she gets angry, and argues back. Doesn't matter what it is about, she just does. She didn't argue this time. She was really calm, and quiet.

Anyway, we aren't really friends anymore.

Oh. She also told me, after reading what I wrote about her, she cried the hardest she has in a long time. I really didn't feel any sympathy for her. She made me cry tons of times over this whole thing. I felt worse then crying.

And then, it reminded me of a song (God, that sounds stupid.)

Look up Feeling Sorry by Paramore, on youtube. I swear this song was written for exactly this situation.

Just a little while ago, me and my two friends confronted MCR about the Thor being her thing. She denied it of course. She said she felt stupid for believing in two fakes.

Her story is she realized they were fake. Months after I TOLD her they were fake.

I don't even care anymore. What is the point.?
All I know is, I am one less friend.

I am having a bone biopsy on the 8th of June. FUN! NOT!

They put you to sleep, and stick a needle in your hip. They take a piece of your hip out, to see if it is healthy. Mine wasn't the last time they did. So they put me on bone medicine, and now, want to check it again.

This time, they are putting me on a medication BEFORE the bone biopsy. This will put a mark on my bones. Then my bones grow. I take the medicine, and it marks my bone again. In between my marks, is how strong and fast my bones grow.

I have had one of these biopsies before. Its not very nice. It feels like a giant bruise on your hip for a few days. It was worse because I had AVN, and we didn't know.

I have to go for dinner, so more later.

Thursday, May 6, 2010

Back from Florida!

Well. I am back. Back from Florida! I have to say, that was probably the best week of my life! Only down side is I got a sun burn which COULD effect my lupus. I am praying to God it doesn't. I wouldn't want to get sick again from a stupid sun burn. I think its my first sun burn ever, and its peeling, which is really gross.

Anyway, we went to Florida on Wednesday, the 28th of April. The plane ride was cool, we flew with Air Canada. Each chair had its own tv, so I watched Lovely Bones, the movie. That movie is freaky, let me tell you. Good, but freaky.

Wednesday was mostly hangout day. We went to Give Kids the World, an amazing organization, I suggest you look up. They are amazing and do amazing things. Its a big huge campus type thing. With over 100 villas, only available to families with sick children. Its completely free, and they feed you, have a pool, have special events, and much more.

The amount of sick kids I saw there was incredible, but it amazed me, how each and every one wore a smile on their faces, because they were all so happy.

We donated $200.00 to them, and are getting a stone engraved with my name on it. It will be put in the ground their, where big donaters can be remembered.

After Give Kids the World on Wednesday we went to Animal Kingdom lodge, where we were staying for the week. We had a balcony with a view of the savannah. We were right by this little pond type thing, so tons of birds would swim in it, and quite a few animals would go their to drink.

Thursday we went to the Animal Kingdom Park. It was beautiful, and amazing.

Friday was my birthday, so I got a pirate makeover with my sister. I think they were quite amazing. Outfits, make-up, certificates, jewelery, hats, everything a pirate needs.

Saturday we went to Discovery Cove Sea World, were I got my sun burn. Though, I have to say that was one of my favorite places. We went swimming with three different dolphins, we got to swim with Sting Rays, and all sorts of tropical fish. It was amazing. The fish were beautiful and swam right up to you, as well as the sting rays, which I think enjoyed being touched. And the dolphins were so smart, and sweet.

Sunday was a free day, we went shopping at down town Disney, we went to Give Kids the World, and some other small stores around Orlando.

Monday was Epcot, but it was boiling hot out, so we didn't do much. Plus, we went on this one really really REALLY intense ride, and we all felt really sick after. It was a simulation ride, in space, flying to Mars. It was spinning, and turning, and bumping. Rising and falling, and the screen was making you dizzy. It was cool, but made everyone so sick. No one puked though! LOL

Tuesday was Universal Studios, which was also one of my favorites. It had amazing rides. And it was just tons of fun.

Wednesday was flying home day. Tiring, but glad to be home. : D

Today, Thursday, we have had quite a scare.
My mom was in the shower, when she suddenly turned it off and called me up. She said she couldn't breathe, felt dizzy, and her heart was racing. We had to call an ambulance, which took her away. My dad is with her now, and they are waiting to see the doctor.

Elizabeth is home from school today, to rest up after Florida so I am watching her, and the two dogs.

I am very worried about mom. I have never seen her so scared before. Elizabeth started to cry when she left, but I calmed her down. We ate lunch and watched a movie. She is in her room watching tv now. She is going to invite her friend over when he gets home from school.

I am trying to pretend she is just out shopping, so I don't worry. I am also being strong for Elizabeth.

In other news. I found out some things about MCR, (which I won't mention) that have made me a little nervous. Apparently their are more things I don't know about her then I though. I understand all people have secrets, but why am I always the only one who doesn't know? And these secrets are important to know, in a friendship.

I have been getting messages from friends, asking me, or BEGGING me to stay at my High School. I want to know why suddenly everyone cares? I was ignored before. And now that I am actually leaving, so they don't have to ignore me, they pay attention to me?

And, you know what else? My supposed BFF MCR is the only one I haven't heard an opinion. You would think that would be one of the most important ones? Guess not.

Monday, April 26, 2010

Its Funny, Really

Ok, I have a lot I want to write about, but first, I need to tell you about my friend.

My friend got home at 12:30 last night, or this morning, what ever way you look at it. She stayed home from school, obviously. I talked to her today, on the phone, and then later went to her house.

She was at the barn, when she suddenly felt like her throat was being clogged. She was having trouble breathing, and her sister told her that her face was going blue. Shortly after, she pretty much passed out.

She was rushed to the hospital in an ambulance.

They sent her home, and didn't do anything.

The same thing had been happening last year, starting in around June, I don't think I knew her that well, back then. Anyway, she was having "seizure" type episodes, and she went to tons of doctors but they didn't find out anything. They stopped for a while, and now they are starting up again. It looks like she is going to be going to the doctors a lot again.

I am worried about her, but glad she is feeling better at the moment.

Now, on to other things.

Florida is in two days. Tomorrow I have a doctor appointment, and then we are coming back home, getting a airport taxi to the airport, where we will stay in a hotel. My dad will meet us there, after work. We are gonna hang out there, and then Wednesday, early flight, and we are in FLORIDA!

So excited! I am getting a pirate makeover, in Disney World on Friday, my birthday. Then Saturday, we are swimming with the dolphins in Sea World. The rest of the time there we are visiting Disney World, and just chilling out! So excited!

On to something else that really bothers me.

I have been told that in high school, people change. You lose old friends and make new friends. No one told me how painful that could be.

During the summer of grade 7, I switched schools. Moving to a new city, and leaving the friends I had known since SK behind. I managed to make friends rather quickly. Three great friends that were girls, and one great guy friends.

Don't I wish that had lasted.

My guy friend moved away in grade 8. He use to be one of my best friends. Now, I never talk to him, and in the rare time I do, its not an interesting conversation.

One of good girl friends, turned out to not be so nice. She got sick in grade 8. A heart issue. Being sick myself, I gave her tons of support. For a while, we were like best friends. And then, one day, she hated me. I found out she was calling me a b**** behind my back!

I told my best friend, about what she did, and suddenly, she had no friends. Now, she is home schooled. Occasionaly I see her posting on facebook. She is the only one that comments or "Likes" her status', pictures, or posts.

My other good girl friend, was never very close with me. We kind of drifted apart. She made new friends this year, and I stuck with a few old friends.

The last girl, my best friend isn't who she use to be. (She will be refered to as MCR

It makes my heart ache, every time I read something about her now that she has wrote, or talk to her.(I haven't talked to her in at least a month, more then likely more).

She use to be so much fun, she never swore, she never wore make-up, had the same kind of style I did. She was loud at times, but mostly quiet. She was good, she did her homework, she cared about her grades.

Now, she swears CONSTANTLY. I went on to one website we both have accounts on, and looked at her profile. At the bottom it said:

Layout requests?What the hell?

She never EVER use to write things like hell.

The last few times i talked to her, she said F***, D***, S*** and other words. I do not believe in swearing AT ALL. She was my only other friend who believed in that as much as I do. Others would swear around us, and she wouldn;t/

The make-up she wears is frightening. Her eyes are covered in eyeliner and mascara. She looks like she has big, huge black rings around her eyes. Its only been since High School she has been wearing make-up.

She is mean now, making fun of people more then she ever did. She makes fun of them when they are around. She shuns people, when they try to join in.

When I was still at school, I would hear her say a lot "crap. forgot my homework at school. Gonna have to do it in french."

She never use to be like that. She always had it done, always on time.

It just hurts that she isn't who she is use to be.

Oh, and at school, when I was there, she ignored me. She would tell me on msn, how excited she was I was coming back.

I would come back, expecting her to at least eat lunch with me, and she would barely say hello. I tagged around her for a while, but I realized I wasn't wanted. She never looked back to see if I was there. She always walked ahead, not caring if I was beside her.

Do you know what I blame?


I do not know, nor care if he is real.

I think he's creepy.

He's the guy MCR and I found on a website called quizilla. At first, it was just funny, because we thought his name was weird.

But soon, she started talking to him, she got his e-mail. They e-mailed, talked on MSN.

Somehow, my other friends got introduced to him. One was dating him? Online?
It was weird.

That was when she started to change. I don't know why, but it was. I think it was HIM. He swore a lot. But other then the swearing, at first, they were a lot alike. Now, they are like, identical. Swearing, personality. They are like the same.

Me and a few friends believe she is pretending to be Thor, and he isn't real. But, we told MCR this and she has denied it multiple times. One time was so bad, as to start swearing at us, then left MSN. I had to call her, and she was still kind of mad.

I hate him, and I kind of hate her right now.

My dad says I shouldn't be mad. Its just part of growing up. So what? Growing up doesn't give you the right to treat people like crap.

And I know, I haven't been at school. I use to be on MSN every night, anxious to talk to my friends. Soon though, they were on, and I was talking to them, but responses started getting longer and longer apart. Soon, I stopped getting responses at times.

Yesterday I posted: "Don't you love when your friends act like you are invislble, because you aren't at school? How they don't talk to you?" as my MSN name.

Well, a whole three people started talking to me! Guess who didn't? MCR.

Mostly, I think they were talking to me, because they felt bad. By talking to me, it cleared their conscience. They didn't necessarily care about me at all. More about how they felt about the whole thing.

To call this post "Its funny, really" is addressing this all.

Its funny, really, when you try so hard to stay at school, to be with your frieds, and suddenly, you don't have any.

Its funny, really, how much you can hate someone.

Its funny, really, what a few words posted on MSN can do. Get you pity from people.

Its funny, really, how people laugh at you, and you think "if only they knew I was sick", and then you think, "But they don't."

Its funny, really, how despite being excited, I couldn't be more depressed.

Sunday, April 25, 2010

Sitting In The Dining Room

Sorry about my god awful titles. Title creations is definetly not my forte.

Anyway, Florida is on Wednesday, and it is SUNDAY NIGHT! My vacation actually starts on Tuesday. Tuesday we are going to a hotel at the airport, so we don't have to get up early.

I am trying to distract myself, but its not really working. I will explain why:

After an early dinner, my sister went to her friends house. Her friend is eleven, and the friends older brother is 14, and my friend.

Anyway, my sister phoned, telling me, that my friend was rushed to the hospital in an ambulance! She was at the barn that her sisters horse is stabled at when her lips turned blue, and she couldn't breathe properly! I am so worried about her!

She doesn't have any diseases like me, but she has been rushed to the hospital before, and I never had. I feel so bad for her, and I am soo worried. She is so nice to me, and I would absolutely hate for something to happen to her. I would also feel bad if she was in the hospital when I was going to Florida. When I was in the hospital, she came with me. I promised her I would go and see her in the hospital (when she gets her jaw surgery, but still).

So worried, worried, worried.

I am trying desperately to distract myself, but it is not really working.

I will write more later.

Wednesday, April 14, 2010

Been Gone For So Long

Yep, I have been gone a LONG TIME. Holy moly.

I don't even remember the last time I wrote. I have been aching to write some more for a while, but I had so much to say, I had nothing to say. Do you know what I mean?

I was going to write yesterday, while I was in my backyard, but it was so sunny, I couldn't see my screen. :/

Anyway, I will try and do a recap of everything that has happened:
- I am going on my childrens wish on April 28th to May 5th. It will be at Disney World.
- I was suppose to have seven doses of cyclo (chemotherapy) but only got six.
-I am not going to school anymore
-I got a new bed
-My mom broke her finger
-I won a writing contest

Ok, that is all I can think of right now. I will explain it all.

Firstly, I WILL be going to Disney World on April 28th, courtesy of Childrens Wish. I will be staying at Animal Kingdom. I am SUPER excited! AND its going to be for my birthday as well! My birthday is the 30th, so I get to be in Disney for that!

Next, I was indeed supposed to have seven doses of chemo, but only got six. It was canceled and rebooked several times. This is what happened:
The first time I was suppposed to have it, I had a bad cold, so they didn't give it to me.
The next time, I got the stomach flu (I am NEVER eating ham again ;P). They canceled twice after stomach flu, because it took so long to get better.
Then, when I actually went for it, and was going to get it (on March Break) I decided not to get it. I was tired of it all. What would one more dose mean anyway? Instead, they put me on a medication called myfortic, and I am going to get Gamma (blood transfusion) once a month.

School is stressing me out too much. So I left. I don't even know if I said I had gone back to school. Well, I did. For a month. I hate it. I hate my school. People stare and laugh. They follow me laughing. On the bus, some kid threw garbage at me. Guidance said if they knew who it was, they could do something. The doctor who perscribed this blog, said its just teasing, maybe they like me. Guys tease girls they like.

I don't think this bad.

He said, if I was that weird, then why do I have friends?
Because they knew me before I was like this.
Because they don't see me half the time. And guess what? At school, I am pretty much ignored by my best friend anyway.

You probably think, why don't I stick up for myself? What is the point? What would I say anyway?

Oh, and whenever I think about school, I have a huge panic attack. Not just from teasing. But because some kid at my school got stabbed, by a kid FROM MY SCHOOL, on the bus stop across from me. Its just not the school I thought it was.

I am planning to get home schooling the rest of the semester. I would rather go to another school, but my mom points out, would it be different at another school? I honestly don't know.
And now they are talking about sending me to a Mental Health place for school. Like, its got a classroom and stuff, and I would just be around kids who suffer "anxiety" like me.

I don't want to go there. My not going to school has nothing to do with anxiety. Hating the mall has to do with anxiety. Do I still go to the mall? All the time. I overcome those anxiety. Hating school, isn't an anxiety, its a health hazard, mentally and physically. No one seems to understand that.

I would rather go to a school my neighbor and friend is going to next year. It is a little smaller then the school I go to now, it is supposed to be REALLY good. And my friend said she has heard only good things about it.

The guidance counselor I went to see about home schooling set up, said it all has to do with confidence. That I have none, and need to work on getting some.

It has NOTHING to do with that. The person with the most self-confidence in the world, would be bothered by what happens to me. I don't even tell my parents all the things the kids do, it would just make them upset.

I use to love school. Now, its just another day, that I wake up and dread.

Not going to school, will solve a lot of problems.

You think I won't be socializing with people? Sure I will, I have my friends three houses down. I have my sister, my parents, my uncle.

And besides, its not like I had a lot of socializing at school. What with my best friend ignoring me. Me sitting with tons of people at lunch, being ignored. Me in class, with no friends.

I'd rather be at home.

I will write more about the other things on the list later. I have homework to do.

Monday, January 11, 2010

Day Three


Day three of blogging! I have an appointment with the doctor who recommended this blog tomorrow. I will give him the web address for it at that time. Wonder what he'll think?

Although, I am nervous about letting him read this. This feels very personal now. What with my violent thoughts for my doctor, and the crap I wish I'd done to people.

But, really, I wouldn't have done any of this stuff to anyone.



I had beading class last week, on Friday. I must say it was my favorite class yet. I learned a great new skill. The bracelets I can make now are beautiful. I've already made my sister, my sisters friend, and my mom one.

I'm sitting in the living room right now, with my faithful dog companions. Houston and Frank are sitting on the couch beside each other. Its quite funny, because their sizes are so different. Houston is HUGE and Frank is only little. Franks back feet are on Houstons face, and Houston's back feet are bent, so they are on Franks face.

Its cute.


Sometimes I feel very bitter and sarcastic. I can't help my sarcasm. My dad gets annoyed at my sarcasm sometimes, but it just pops out. Most of the time I'm not being serious, but still. I'm trying to work on it though. It's hard.

Do you know what I hate? How people look up to me, BECAUSE I'm sick.

People are always "Kathryn! You are SO BRAVE. You go through SO MUCH, and you are always smiling! How do you do it?"

And I smile, and give my "I enjoy life, so I stay positive" thing I say. But inside, I'm just annoyed.

What the hell am I SUPPOSE to do? I'm not going to walk around all the time, like some zombie or some ass hole. And I'm not brave. Its my life. Its not brave.

"Oh, Jenny! You are SO BRAVE because your a cheerleader!"

"Oh, Marcus! You are SO BRAVE because you play soccer!"

"Oh, Benny! You are SO BRAVE because you watch tv!"

See, what I mean?

My life just happens to be filled with a little more medical issues, then others. Thats not bravery.

So, it really bugs me when people, especially ADULTS, say they look up to me, because I am so brave. And don't think I am ungrateful for all my support. I am VERY thankful for everyone, its just annoying hearing ALL THE STINKIN' TIME about my bravery.


Do you know what I hate?

"My birthday is TOMORROW! Invites look AMAZING!" Going to have so much FUN! Lots of friends coming OVER!"

Thats posted on, say, facebook, or twitter.

What about the kid who wasn't invited, who thought they were you friend?

Funny enough, my sister and I have both just had this shoved in our faces.

My sisters friends were all invited to a girls birthday, the one not invited? My sister.

All sorts of my friends were invited to a girls birthday, the one not invited? Me.

And its so annoying hearing about the party.

Facebook posts filled with party details, twitters about cakes. Friends IM about presents.

Great for you. I get to stay home, and learn about lupus.

Like, I'm not at school, so sure, you might think I can't go to a party. But I talk to my friends enough for them to know, I can't go to school because of appointments and symptoms, but I love any excuse to get out of the house to visit and socialize with people more then just my family.

I love my family, but I go stir crazy if I stay here all the time.

But I don't regret saying Happy Birthday AT ALL. Because I'm that kind of person.


You see all this venting? I am NOTHING like this in person. And maybe, thats the problem. I am SO not mean at ALL. And this is pretty mean stuff sometimes.


Well. Its almost lunch time, and I need to go get ready. So, next post I PROMISE I will post about my revenge on Thor. (Refer to this list:

- Kick/Punch my lupus doctor
- Kick/Punch this kid that was in my religon class.
- Get Revenge(somehow) on guy named Thor.
- Tell everyone I love them
- Give rock that says "Suck on this" to doctor. )