Thursday, 29 December 2011

"Grow Up Already."

People say all the time 'you don't realise this is the best time of your life, and when it's gone it's gone forever.' What people don't realise is that I know this is the best time of my life and I never want it to end.

People say all the time 'graduation was one of the happiest and saddest days of my life.'
What people don't know is that all my life, even before I started school, I feared for the day I graduate school.

Honestly, I do want to grow up one day and have a husband and children. But I don't want it to happen too fast either. I'm afraid of a lot of things: I'm afraid of the respondsibility, the danger of not having my mum, driving a car, and just being alone. I'm most afraid of money though. I'm afraid of how I will pay for college: I can't work many jobs due to my arthritis. I'm afraid of never having enough money and needing my parents for a long time just as I have seen many people do into their late twenties.
Perhaps right now I'm a normal kid, seeing I'm a few years away from adulthood and it's normal that I'm nervous. Let's just say I'm making the most of my teen years: I don't act more mature than I need to at times. I read comics and I obsess over Harry Potter, Beatles and Disney: Just because I know that as an adult, these things just won't be accepted.

-Living the Dream

Defied Death

I had just watched a video about a boy who 'escaped death three times.' He talked about how every time he was going to die, it was light and peaceful and he couldn't stop smiling. In fact, he wanted to be there and never wanted to leave. No matter what you believe, don't you think that's just one of the best ways to go? Not sad and crying and in pain, but happy, feeling so peaceful.

I had always feared death since my grandmother left us all of a sudden when I was three. I remember being six years old in the car crying because I didn't want to die or I didn't want my mum to die. Let's not go into religon here: I am not judging anyone and I don't want anyone judging me. But, just watching this boy write all about how nice it was just reassured me that in the end, we'll all be okay. Whether it be hallucinations or actually passing onto Heaven (or whatever you may believe).

Rest in Peace Benjamin (1993- Christmas, 2011). I didn't know him, but now I wish I did.

Monday, 26 December 2011

Love

People often say that the word is too over used. I know that they are targetting young kids who are infraunted with their 'boyfriend' or 'girlfriend.' But, honestly speaking, how can the word love ever be used too much? Sure: Love is a word that describes a very strong emotion but it also speaks of affection for one another.
If you could not love anyone other than your baby, your mother, all animals and your partner of ten years I think the world would be a very lonely place. I admit, I'm not one to show all that much emotion however I do have much love towards others. I love my family. I love my friends. I love babies. I love making people laugh and seeing them smile. I even love my homeroom. Do I love everyone in the class? No. But I love our routine and the diversity, and I especially love hearing the remarks the boys whisper  while others are talking in class.
Naturally as humans we can not love everyone, but we can all show respect and compassion towards one another. And eventually that can become love. What's better than showing others you care?

Thursday, 22 December 2011

Those Kids Who Make You Think

To be perfectly honest, teenagers scare me. They don't listen, they always seem to be up to something, they don't plan ahead and I'm always afraid they're going to do something that will mess up their life. I think if you looked at me, people would tell you I need someone to look out for me. But that's not always the case. You see, I'm always looking out for some kids. They're the ones that make you want to back off too: 'Mean' girls and sulky boys.

I feel like everyone needs someone to look out for them. I watch out for quite a number of people, not just my friends. I look out for the disabled in my school (rather, as many as I'm aware of). I keep an eye on severals girls, some of which quiet and need  a friend and others who are popular but unstable. I worry for one boy who is so smart but just doesn't apply himself. Do I talk to all these kids? Some of them sometimes. Not often. I'm not stalking them: I just invite them to sit with me when alone and offer help when their eyes show it. In my mind, there are silent applauses each time I see passed in homework. In fact, everytime some of them laugh or even smile, I walk around with my day made.

Maybe it's dorky of me to say this because some of these kids seem perfectly capable of caring for themselves, and I'm not saying they can't but I can see pain and know when you just need someone. Perhaps if they knew this they would think I was a loser because I look practically like a baby compared to many of these kids. But, I've had so many times where a kid I had only met a few minutes earlier pour me their life story. I'm not nosey: I  don't ask questions. When someone is sad I am quiet so they can say anything they want the moment they want to without worrying if I was talking. I don't tell secrets either. Maybe they wouldn't think it's stupid I do this, or just assumed I cared for them even a little anyway.

"Some people care too much. I  call it love."

Monday, 19 December 2011

Too Cool for You

Too cool indeed. At least in the cold sort of form. I use a laptop and at the moment I have been keeping my hands under the warm laptop just to keep my knuckles from freezing off. :) I'm notorious for having cold, cold hands in my class. I've been caught wearing gloves and mittens several times by kids, and in fact one boy laughed out loud and told me he would pay to see me try and eat while wearing them. Can't say I didn't laugh at that.

My doctor suggested I get a wax machine so I'll keep my hands warmer and probably prevent damage, but for right now soaking them in warm (and then hot) water with the nicest handsoap we have every hour or two is helping, as is wearing gloves and sitting on my hands. :)

What do you do to keep your fingers nice and warm during cold weather?

Sunday, 18 December 2011

Family + Support = Not Always There

Now that I've told you the truth about Methotrexate, I think it's clear how clueless everyone is about it. Through no fault of their own, of course. When I first started it again (orally this time) I was in Disney World with my parents and other family members. I had only been taking it two or three weeks before the trip. I didn't realise how sick I would get.

The worse thing was the mood swings. I won't specify but there was a lot of tension that week. My depression and mood swings were not the best thing to mix with stress. I cried a lot. Also, my jaw hurt an awful lot that whole week. I was tired all the time as well, and though we use a wheelchair in there anyway, I was literally stuck in it except for getting on and off rides. AND my mum had made reservations to all my favourite restaurants but I had lost my appetite that week and forced myself just to taste all my Disney favourite foods. I got nauseous too, and thank God I never got sick.

The worse part of this was that my family did not understand. My mum understood and never teased me with all the good food and ended up taking me to do gentle rides and shows when the rest did the extreme rides and went mac. They really just didn't see that I was ill, and I wasn't going to explain to them. We were in Disney. No one cares if you're tired; They just care if Splash Mountain is broken. I did have a nice time though.

Rest assured, this didn't turn me off of my favourite place in the world. I'm going again (Yay!) this summer.

Anyway, this is just a bit of proof that when your sick and it's not visible no one will acknowledge. Even your family. Hopefully in the future people will become more empathetic but all of us with Arthur must be prepared to either explain or ignore. I do a combination of the two.

Keep your chin up kid
-Elizabeth and Arthur

Truth Is

Truth is, I take chemotherapy to treat Arthur. It's called Methotrexate and in high doses it is used to treat cancer. In small doses it is used to treat arthritis. We use it to treat arthritis because it surpresses your immune system, which does not work properly in a lot of arthritis cases, except in the case of Osteoarthritis (arthritis you get due to wear and tear).

Though I take it in small doses once a week in pills (people with cancer can take it in pills too), it does not mean I do not get the side effects. Sure, it's much less worse than a person taking it in high doses but no doubt it's still there. I've lost some hair (most people won't lose all their hair), especially eyelashes much to my annoyance. I get mouth sores too and whilst they don't hurt, I do get that odd taste in my mouth. I get nasuea  too, as most people do. Fatigue happens too. In  fact, when I first started MTX again in August, I  was in Disney World and I lost my apetite. I was so upset because we had reservations to all my favourite resturants and I could barely eat any of my favourites foods.

Also it is not very well known that Methotrexate can cause emotional changes: Depression, anxiety and mood swings. Yes. I once became very depressed for a whole school year because of if, and I only got better after having a break for a few weeks. Now, I've gotten both depression and mood swings. I get my good and bad weeks. Hopefully Christmas will be a good week.

Anyway, my point is Arthur needs chemo. No, I will not die of arthritis as a person with cancer would without chemotherapy. But I would be trapped in my home unable to do anything, or just be a kid. Anyway, as I term this with people I explain this to, "Doctor says that if I take chemo long enough, I might go into remission in a year or a few."

Wednesday, 14 December 2011

Happy Happy Joy Joy... Sore

I'm definatly in a holiday rush. A little stress yes, but that is mostly from school. I'm too busy to be stressed! I'm pumping out paintings for the family like mad, trying to do homework, decorate, keeping human contact, and trying to enjoy myself. Of course, this has brought (as expected) soreness and more fatigue. I'm dropping dead in my bed later at night than I would like because I can't even pull myself off the couch. My rheumatologist put me on a pain reliever everyday but I'm wondering when it will work...

My bestfriend (who lives very far away from me and also has her own Arthur) is dealing with some boyfriend problems and I've been feeling guilty because I can't help her much. :(

Recently too I've learned to stop caring what people think of me. It works well too (so long as you're not having a bad hair day). I move awkwardly because of Arthur and I've come to accept that. I have a hard time making eye contact because I'm very shy and nervous around people (though I'm getting better). I've been learning and working every day to become a better person because everyday I feel guilty that I didn't look someone in the eye or I didn't open up to someone as much as it takes to make a new friend.

I guess that's why they have us in school for so long: It's so we can learn to be better people to one another. Or forced rather because we're stuck together for 8 hours... :)

Sunday, 11 December 2011

Christmas Sayings

Most kids my age tell me that it's wrong to say 'Merry Christmas' so I should say 'Happy Holidays' instead.

Most adults say 'Merry Christmas,' in fact a poll taken in one state of America said only 2% of people like 'Happy Holidays' and 98% like 'Merry Christmas.' This poll had many people of many different faiths.

I can understand where the kids come from though: In school we learned to sing "We Wish You a Swinging Holiday," made 'winter trees,' and one year in middle school when a Jewish friend of mine brought in a dreidel so he could teach us how to play at lunch, he got scolded and it got taken away. I'm not going to agree or disagree with any of this just to keep the point of this status clear.

So, this year I decided to split the difference between the ages: I say 'Happy Christmas.' :)

Saturday, 10 December 2011

Remission Maybe

Last time I went to see my rheumatologist, he was telling me how much I've improved. He told me methotrexate is most likely my medicine. Right now, it's clear he's trying to get me into remission now that things are starting to come under control.

I'm taking Mobic to help with pain (it's not helping much) but I can't imagine a life without pain: I can't remember a time I didn't feel something: I don't think it's always been very painful but always an ache, since I was very young. Is that possible? I'm not sure.

In a way if I went into remission, I would be thrilled to finally get to go out with my friends without wanting to collapse on the floor due to tall the pain. In a way though, I would miss Arthur: It's a pain that's grown on me. Odd? I hope people can relate.

Sunday, 4 December 2011

Cold

Cold hurts. I'm not going to lie. The cold wind hurts. The cold sheets hurt. The cold shoulder hurts. This simply brings up three  points of arthritis:
-The weather bothers me terribly. I live in an area where I get all four seasons brutally. Right now it's winter and is very, very cold althugh it will get much colder soon. The weather changes (pressure and temperature) are very bothersome and I've taken to wearing gloves and boots indoors. In fact at the begining of summer (and continuesly during the warm weather) I lie out in the sun in jeans, a tee shirt and bare foot. I once told my mum "it feels like the coldness is melthing from my bones." She almost cried.
-The cold sheets just refers to the fact I don't take well to any sort of cold well. Cold packs are terrible anyway but if I could throw my clothes and shoes into the oven before I put them on, I would. I even learned how to get dressed while under my warm covers in the morning. The cold is painful and makes me stiff.
-The cold shoulder is just me being a drama queen. There are lots of times I could use a friend when I'm in pain and my friends don't understand. Sometimes I tell them what's going on, but they act as if it were nothing. Maybe they're just pretending to make it as if nothing is there or wrong. I don't think they understand I need my friends to at least show a little concern: I need their support.

Friday, 2 December 2011

Rhuemy

I saw my rhuematologist. He said my increasing pain is normal because of the cold! He told me my Methotrexate would take care of it, and any damage. Thankfully, I only got away with giving a little blood for the visit.

See you on the flip side,
Elizabeth

Thursday, 1 December 2011

Welcome

Be my guest! Put your feet up and relax. :)

My little friend Arthur- more commonly known as Juvenile Psoriatic Arthritis- has been annoying me since I was a year old. He's grown onto me so much I can't imagine life without him. Even though I have psoriatic form of arthritis, I don't have skin psoriasis: My mum has psoriasis so that's where I get it from. I have arthritis (currently) in seven joints: Both hips, both knees, both ankles and my spine. More recently my hands have started to hurt, which is troubling because I'm an art student. I'm beginning to find trouble with some more joints too. Wish me luck.

See you on the flip side.