Wednesday, 27 February 2013

I'm Superior To Arthritis

When you're tired, everything is painful. Joints are painful. Moving is painful. Colours, cold, light, and sound hurts too. Currently I'm curled up with a blanket because it's not nearly as painful as sitting up. Today is not a good day.

It's odd how one day your on top of the world, and then the next day you don't think you can open your eyes, forget open the door and go out in the world. But you go out anyway, because you know you have to push on. And while you carry on, the world seems to want your attention more than ever. Things pop up from nowhere and need to be completed. People need you to be here and there and everywhere. And worse, pain demands to be felt.

There are times I forget that despite youth promising energy, I still have arthritis and I am going to have days where I feel horrible. It's not so hard to push on than to accept reality. I'm a young kid. I want to go out and do things with my life. It's disappointing to have 'an old person's disease' hold you down sometimes. And it probably will for a long time.

While it would be nice to just give up and let the disease take over, I won't let it. I've come so far in such a short life time to just do that. If I was supposed to let the disease take over, it would've taken me down by now. But it hasn't. I'm superior to it. Just as working hard to get good grades is worth it, pushing past my arthritis is worth it. Life isn't going to wait for me, after all.

Monday, 25 February 2013

The Assumption That "Liz is Healthy"

A lot of people automatically call me Liz when they first hear my name. It's unfortunate for me, because I'm not too fond of the nickname. I prefer Elizabeth, that's just who I am. While I don't really correct friends anymore, I do introduce myself as Elizabeth and will correct them gently ("So Liz..." "Elizabeth, please."). And I do make a point to call another by the name they insist they like being called: I will never assume that Oliver prefers Ollie or that Grace doesn't enjoy her nickname.

I'm not the type to really make assumptions. I don't assume everyone is healthy, but unfortunately a lot of people do. Someone once yelled at me for sitting on a train when there was clearly a disabled person in need of a seat: Himself (It was not visibly obvious he was handicap). I had put in a full day of stairs, walking and even running to catch a train and I was obviously exhausted. I'm quite aware he picked on me just because I'm young. Another time a person informed me they could see my limp was clearly fake, and that they could see I was just looking for attention. In my own defence, I didn't even know I was limping until that person informed me of my act.

I think a lot of people like to be correct. I know I do. So that's why I don't assume anything anymore. I'd rather learn and have correct vision, than be ignorant and hurt someone.

Sunday, 24 February 2013

Arthritis ABC's

A is for Arthur, who's full name is Juvenile Psoriatic Arthritis.

B is for Biolgoic, of which is what I take.

C is for Crash, which is what happens when I over do it.

D is for DMARD, which a lot of people take.

E is for Elizabeth, who enjoys writing her arthritis adventures for all to read.

F is for Flare, of which Arthritis does sometimes.

G is for Gentle, because that's how I treat my body.

H is for Hospital, where I often am for Rheumatology and other fun.

I is for Ice, because sometimes the cold helps.

J is for Joints, that are often in pain.

K is for Kind, as the people I meet through my blog.

L is for Listen, so others can learn and spread word that we need a cure.

M is for Methotrexate, who's name, relief and side effects are famous in the world of Arthritis.

N is for NSAID, which dulls the pain sometimes.

O is for Options, that we have because of growing research and scientific discoveries.

P is for Paediatric, so we remember Children get Arthritis too.

Q is for Quiet, which is bliss after a long, painful day.

R is for Rest, that I never feel like I get enough of.

S is for Stiffness, that plagues me in the morning and the nights.

T is for Try, because even when unsuccessful, trying is what counts.

U is for Undiagnosed, which a lot of us go through for years before an answer.

V is for Vent, because we all need to sometimes.

W is for Waiting; Waiting for medicines to kick in, doctors to be on time, and for more options.

X is for X-Ray, because who's never gotten one of those?

Y is for Youthful, which our bodies might not feel, but our hearts and minds remain with good spirit.

Z is for Zzz, because fatigue can get the best of us sometimes.

Saturday, 23 February 2013

Medicine That I Hate

Medicine has come a long way since it's very humble beginnings. I'd like to thank the people who invented life saving procedures and equipments. However, I have a message for the people who invented hospital gowns, Foley catheters, plasters (band aids) that are just TOO sticky, and braces that are extremely uncomfortable and inconvenient: I hate you.

It's surprising how many things in medicine that are supposed to make us feel better, actually make everything feel worse. For example, after being injected with contrast for an MRI, the technician put a plaster over the injection site. After a bit, I decided to take it off. I didn't realise how sticky it was, so when I went the 'get it all over at once' method and just ripped it off.... Well, it looked like I burnt myself! My skin was so red and raw, I probably did take a layer of skin off.

And, who likes the hospital gowns? They open in the back and you never know if you're giving the world a peek. I heard of some hospitals now having ones that snap on the side, which is great but most still have the old fashioned 'is there a draft' gowns. The only thing they're good for are jokes, puns and snide remarks.

If you could get rid or change any piece of medical equipment, test or procedure, what would it be?

Friday, 22 February 2013

8 Guilts of Arthritis

I carry a lot of guilt on my shoulders.

1.) I slow down the pace of life a lot for others. I feel like I ruin a lot for others.

2.) There are times I can't get up and do things so I often feel like a burden.

3.) I know the emotional toll arthritis has caused for my family and friends. I hate that I put them through that.

4.) I might have arthritis, but I know it's not as severe as some others who I've met. I've never needed surgery or braces or anything. I feel the immense guilt of not being able to relate and that I'm not strong enough because I'm complaining.

5.) I just take Enbrel and it's actually working.... Why did I find something? Why me? Why not someone who has it harder than me?

6.) I haven't  had a flare since I was eight. And I know people who are in and out of them.

7.) When people ask me how the arthritis is or how my medicines are working, I tend to bring down the mood. Even though it might be good news, people seem to always act depressed when I say that I still have arthritis and I still have to take medicine.

8.) I feel guilt when I admit I'm in pain. That's because even though I know that my joints are throbbing (like they are now), I know that it could be so much worse.

But of course, I don't let this bring me down too much since I know that I did nothing too cause my arthritis and I know it's not my fault.

Monday, 18 February 2013

If Doctors Could See Pain

I haven't had a flare up since I was about eight, so rest assure that was a long time ago. It was also my only flare. I was in hospital for about 8 days due to it, but it was actually about two months long. At its peak, I had such a high fever I hallucinated a couple times. I actually didn't get diagnosed until a few  years later. I am very lucky, and I am grateful for that every single day

Paediatric chronic pain, as well as adult pain, seems to be dismissed faster and takes longer to diagnose. Sometimes I wonder if doctors just think children are crying for attention or that parents are exaggerating or looking for attention.

I know that a lot of people only believe in what they see and if there is proof. For doctors, it's no different. But sometimes I wonder if they have clouded vision when something such as pain is blatantly present.

Sunday, 17 February 2013

Doctors Say the Darndest Things

I'm in a bit of a creative mood at the moment (though obviously not creative enought to create my own title). Today, as I sit and watch a medical series on television, it occured to me that the things doctors say make for some great entertainment.

Just like what I'm watching: A man was brought into hospital but refused treatment. The doctor spent a long time trying to convince him that he needed immediate treatment, but the man refused. Walking away, the man collapsed and as the nurses were putting him on a gurney, the doctor said "You're all mine now."

"You're all mine now." That sounds more like a mad scientist than a doctor. I think I would've been horrified if I were that man.

Things ever said to me include (but are not limited to):
  • "You better make sure the Methotrexate starts working soon." (I'll be sure to let my immune system know.)
  • "Nothing appears to be wrong." (Oh really?)
  • "I don't believe the side effects are that bad." (You try living it.)
  • "Are you feeling any pain?" (Are you kidding me?!)
By the way, I don't see any of these doctors any more. Actually, all but one was said by the same doctor in the course of the year and a half I saw him reguarly. He got fired. Shocker.

Saturday, 16 February 2013

Enbrel Injections? No Problem!

It's an Enbrel night. And a little while ago I got up, gave myself a shot, watched some YouTube videos and the wrote this. Needles aren't a big deal for me anymore. They really never have been, though I could never have imagined in a million years that I could possibly give myself them. I used to feel very bad for people who do. But I do know now that its just a part of taking care of yourself.

But, naturally, it is a big deal. It's sad that people have to give themselves injections. And people will tend to be horrified when you say that you do. But I wouldn't let that put anyone off from trying a medicine that requires a needle.

Enbrel terrified me a lot at first, not just because of the needle but that was part of it. Now, I can't imagine not having it! It's helped me so much: though I still get pain, it's not as bad as it was before. It's helped me loosen up a lot too. Of course, I still have a long way to go. But it's worth it. Even giving myself a shot is worth the 6 out of 10, rather than 7.5.

Friday, 15 February 2013

Hand Pain for Me

My hips hurt a lot today. My back hurts a lot today. My knees hurt a lot today. But the worse part is, my hands hurt a lot today.

And I don't have arthritis of my hand.

No, this isn't random pain. Today I was trying to finish a coloured pencil illustration. Rather than taking my time and using nice layers that would smooth over, I rushed (I didn't have much time to complete it) and grinded my coloured pencils into the paper. In just a few minutes (if not less), my hand hurt terribly. It hurt to touch something, hold something, move my hand, or even just keeping it still. It was bad and still is kind of bad.

I always felt 'out of the loop' with adults and children with arthritis because most of those I've met have hand pain. I now symapthasis with them. Not completely, I admit not even half complete, but I can now understand that hand pain is the worse pain. You don't realise how much you need your hands until they hurt too much to use. I can't even imagine what you go through.

Thursday, 14 February 2013

Arthritis for Valentine's Day

Happy Valentine's Day!

For all those couples out there, I hope you had a happy day. To all those who are single, I hope you had a happy day. For all of those who aren't really sure if your a 'real' couple yet, I still hope you had a happy day.

I am a single teenager with arthritis. So, this year Arthur was my Valentine.

We dressed up nicely in pink, had heart shaped sandwiches, and pink cupcakes. We also got to work on some art projects, joke with a lot of friends, and even saw some cute boys (I don't know about Arthur, but that always makes my day a little brighter :) ). Arthur was even on his best behaviour, so it was a pretty painless days. Except the pain of a single heart... just kidding! It was kidney pain.
A lot of people who are single walked around miserably today. I think that it's really up to you to make your own time: No one can force you to be sad or happy, it's really up to you. And anyway, it gets annoying after a while to hear "Happy Forever Alone Day," even when they're just being funny. And if you really feel there is no way to feel happy about Valentines Day, just remember....

All the heart shaped chocolate is going to be half price tomorrow. :)

Tuesday, 12 February 2013

Would We Know Happiness if We Didn't Know Pain?

I've always heard the saying that "How could we know happiness if we didn't know pain?" I don't think that's exactly true.

When I was about six, whilst I was in school I had one of my favourite books stolen, another book vandalised, a teddy stolen and was constantly humiliated in front of my class by my art teacher. Mostly though, I was ignored by the others. Of course, other things happened too but I just wanted to put down some favourites from that year.

I had my happy moments as well, as all children do. They probably were more happy because of all the things that happened to me. But I think I still would've been happy even if Teddy didn't get stolen and if I ever got to finish Winnie the Pooh.

However, in the case of arthritis, the saying is extremely true. You don't know the joy of being capable of walking a mile easily until that mile becomes a painful challenge that is practically impossible. You don't know the satisfaction of being able to finish a coloured pencil portrait until your hands are too painful to properly grip the pencil. The relief a medicine gives might feel like Heaven after a battle with side effects from introducing it.

I guess most things in life 'Just Depend.'

Sunday, 10 February 2013

Those Stupid 'Arthritis Cure' Commercials

As I write this post, I'm actually watching a favourite film from when I was little and I'm thoroughly enjoying it. What surprises me, however, is the depth of the topic and how wonderfully it's presented.   It made me laugh, cry, and just about everything inbetween. I think that when a film can really reach within you, it's a film for everyone. Even if it's for children.

If you think about it, a lot of advocacy short and full length films are the same way, regardless of who their for. Soldiers, cancer patients, disaster victims, and all sorts of people have films that touch people. Even animals do. I think that people react better and want to help when they're presented a situation and get to watch it unwind. Even hour long documentaries can grip people. 

With arthritis and other painful diseases, we have many forms of advocacy and charity. But why is it, we always seem to come in second place. Why is that? 

I, personally, blame the commercials for heating pads, pain topicals, medicines and such that down play the disease SO much. Think about it. People believe a lot of what they see, and many tend to believe ONLY what they see.

Saturday, 9 February 2013

Arthritis Procrastination

I am a procrastinator. If procrastination was an Olympic sport, I would get bronze, silver and gold every year running. I leave a lot of assignments to the week before they're due, and sometimes closer to their due date.

You see, I procrastinate for a lot of reasons. The biggest reasons is arthritis, especially when it comes to art projects. And this is my Procrastination Reason List:

1.) I have an 'art studio' in my own house, however since it's on a different level, I have a hard time getting there sometimes.

2.) There are times when I really can't focus because of how uncomfortable I feel.

3.) Arthritis fatigue. Enough said.

4.) I will not preform well with stiff joints: Whatever I may be working on will most likely come out 'all wrong' and cause more frustration in the mean time.

And, naturally, there are times I wait until the last moment to do a project just because I don't want to do it. But, mostly it's my arthritis reasons. And by no way are these excuses: I take full responsibility for my projects and always get them done on time and with quality work and effort.

I think a person can hold off as long as they need (or even want, in some cases) as long as the quality of their work is good. Anyway, I find I work  very well under pressure, so I am able to procrastinate and complete an excellent work.

Does arthritis 'force' you to procrastinate?

PS: As I write this, I have two projects to get done by Monday and at least three that need to be done in two weeks. ;)

Thursday, 7 February 2013

'Can Kids With Arthritis Play Sports?'

It's been a late night with all the art projects, I apologise for the late-ish post.

"Can kids with arthritis play sports?"

This questions stumps many people. And the answer is not really shocking.

Short answer: Yes. Absolutely, kids can play sports.

Long answer: Maybe. It really depends on the kid and the sport.

I know a lot of kids with arthritis. When I say a lot, I mean at least twenty. And I must say, they are probably the toughest lot of kids I know. Some of these kids do horseback riding, swimming, dance, gymnastics and all sorts of fun things. And then there are some who have trouble getting off vans, standing up from a chair and other things.

However, I think that the myth 'kids with arthritis can't do sports' is positively false. Perhaps not all kids with arthritis are able to do sports, but a lucky some certainly can (and take advantage of that blessing).

When people find out I have arthritis, sometimes they say "So that must keep you from doing sports, right?"
That's when I smile and say, "Yes, it does. But that's okay: I'm not a sporty person anyway." :)

Wednesday, 6 February 2013

"I Have Arthritis" Reactions

I can't count the amount of times I've had to tell people I have arthritis. I'm pretty open with it because I know it helps spread awareness of juvenile arthritis. Anyway, I don't think I'd want to be friends with a person who judges me because of my chronic illness anyway.

I've gotten a variety of reactions from people. Including, but not limited to:

"It probably keeps you from playing sports, right?"  (Some kids with arthritis can play sports).

"Oh my gosh, you poor thing."
"My grandmother has that too."

"Oh yeah, I'm starting to get that from running too much."

"Oh wow, that stinks."

"I can only imagine that hurts: My back hurts from lifting boxes yesterday."

And my favourite:

"So?"

Just as the teacher asks in class, 'so?' Why is it so important? What's the big deal?

I think we all know the answer to that. :)

Monday, 4 February 2013

Illustrate Our Pain

I think that everyone- whether they are healthy, ill or somewhere in the middle- needs ways of expressing their pain. It's not that they need to express their illness if they have one or something like a break up, but just that they need to express the way they feel.

I really want to talk about the use of art to convey a message. I think everyone should try 'showing' people how they feel, literally. Make art when your in pain. Rip paper to show how torn you feel. Make bold marks because you are so mad. Use your foot because your hand hurts. Draw in blue because the pain brings you down. Trace your hand on it's side. And don't just limit this to paper: Use clay, writing, music, photographs, ANYTHING. Do it to make yourself feel better: The quality doesn't matter, what matters is if you feel better.

I would like to propose that chronic pain sufferers, whether we are young or old, take five minutes to illustrate their pain. Just five minutes: Details don't matter. This is an example of what I did today when I felt like I couldn't take the pain anymore.



Pretty, isn't?
Nope.
But even though it didn't take away the pain, it did make me feel a little better.
Please, give it a try if you can (Don't push yourself if you really just can't).

I'd really like to see what some of you might have created, so if you did do some sort of art to express pain (it doesn't have to be this exactly), please send me a link so I can see and maybe we can feature it on a future post (only if you want).

Sunday, 3 February 2013

Being Used To Pain and Other Misconceptions.

I think there are a lot of misconceptions when it comes to chronic pain. Such as the misconception that 'being used to pain' is the same thing as 'not feeling pain.'

I don't think people realise that being used to pain doesn't actually mean you don't feel it anymore. It just means that feeling pain is not out of the ordinary. The truth is I feel pain almost all the time, and though I am used to feeling it, it does not mean it's any less uncomfortable. Though it's true I might have a higher pain threshold, I do feel pain. And I do cry when it's really bad.

Also, I'm one of those people who really like to laugh and smile. This is not because I'm being a trooper through my pain. This is because I like to laugh and smile. I could just as easily complain. I just don't.

And another misconception is that kids will grow out of whatever they have. This is the case for a lot but not for all. I have a friend who is about twenty with juvenile arthritis. Yes, juvenile: If it started before the age of sixteen, it will always be juvenile arthritis.

I don't even want to bring up the misconception that the medicine they saw on television will cure it, just like the actor said.

Saturday, 2 February 2013

Arthritis Survivor

Recently I've been thinking of the term "Arthritis Survivor." I've read it in the past and never really thought about it until now. I really don't have an opinion about people refering to themselves or others as an arthritis survivor, but I do have a story.

My dad used to work with a man who had a daughter about my age with severe rheumatoid. She was constantly in and out of the hospital and used a wheelchair because it was too painful to move. She had it since she was very young and went through years of aggressive treatments and surgeries. She also had severe complications from the RA.

When we were about twelve or so, she got leukaemia. It does happen rarely with kids with arthritis who take DMARDs. I can't stress how rare it is. But it did happen to her. She was very weak between the arthritis and now the chemo. She passed away when we were about thirteen.

It's a really horrible thing when children pass away. Knowing someone with almost the same disease as you passed away is a bit sobering, even when the disease is worse that yours. I have friends from all over the world with arthritis, and I cried a lot when one of them had a cancer scare over the summer that turned out to be nothing. This friend too, has very severe RA as well as other immune diseases.

It's scary, I think, to realise how true the term 'Arthritis Survivor' is. Whether you use it or you don't use it, I think it's important to understand the depth of our words and to make sure others do too.

Friday, 1 February 2013

"You Were in Hospital Again"

As I wrote about yesterday, I had an interview for school. What was more interesting, however, is what happened after it. Let's back track a little.

It's now a few hours after school ended and I'm walking from my interview to my extra class, despite it ending in about twenty minutes anyway. I'm very much dressed up and didn't want to take the five minutes to change clothes. I'm exhausted, in a lot of pain and also relieved at the same time. I walk into my class and the first thing I hear is "You owe me an explanation!!" Normally, I would expect this from a teacher. But this was shouted across the room by a friend of mine, and I couldn't figure out what in the world he was talking about. Actually, I felt like I was in trouble.

Fast forward to today, I finally get to talk with my friend. When I asked him what explanation did I owe, he said he figured it out: "You were in hospital again because you got sick." I explained to him what did happen, and also asked him "Why would I go back for class if I was in the hospital? Also, I would I be dressed formally?" And I asked myself, if he thought I was in the hospital, why didn't he call to make sure I was okay?

I really don't know what to think about this or how to feel. I'm kind of insulted: Not so much that he  thought I was seriously ill, but that he didn't 'check in' on me. I always did while he was being diagnosed by a long term illness (not chronic), for every test and doctor's visit. Perhaps it's nice that he assumed the only way I would not attend class is if I was seriously ill?