Monday, 30 April 2012

What A Wonderful Beginning

Sometimes on television I find ads for miracle joint looseners or bone strengtheners or something to keep your muscles strong. They're meant for people older than fifty and they show fifty, sixty and seventy year olds do gymnastics, climbing mountains or carrying hundred pound sacks of flour on each shoulder. I can't do anything like that. I get angry (not jealous, angry) that these people who are older and have had so much experience be strong as a bull, versus my friends and I with arthritis who have no experience and are very weak, even with physical therapy and medications. Most of them have had arthritis since they were toddlers or young children: The oldest age to discover their pain was -I think- ten or so years. But you would think we were envious at that.
We really aren't. Or that I know of. Perhaps we all do but we just don't admit it. If anyone really wants  to do something, they do it. No one goes and runs and puts themself in pain for nothing: Granted, for the most parrt we all keep fit but not over the top. If someone wants to join the tennis team, and not just for fun, I mean they really, really want to join for something worth wild, they work hard and suffer the pain in silence. A lot of us don't do sports though because it's just too extreme but one does horse back riding competitions and another does archery.
But no matter how much you practice, when you watch us dance or ride horses or anything else, you can tell we have arthritis. We limp, we stand in odd positions, we are awkward in movement, we make faces that read pain subtly, we have lips that are chewed from bitting the pain, we have bruises from the needles and medicines, and we always listen to 'thank goodness it's only arthritis.'

Sunday, 29 April 2012

Kids in the Body of the Elderly

This past month I've been going to non-stop parties and functions. Not out of wanting to go really, but of having to attend out of politeness, necessity or because I'm being dragged by my parents. I'm so exhausted and sore: These old bones can't take much more. I really can't handle going out. They aren't even over the top parties: We have supper, talk a little and maybe have coffee and dessert. Even a trip to the cinema after class took a lot out of me. Maybe it was the trip to the cinema (which is not often due to the fact it is several towns over), or maybe it was a long day of school and an hour of swimming. The point is, even going out often and doing practically nothing is tiring. Though I know I could be way worse, it is very true when they say kids with arthritis are kids in the bodies of the elderly. Even then, I've seen many elderly people who are healthier and stronger.

Friday, 27 April 2012

Wonderful

I've had a wonderful day! Really! I took a few exams which I know I did very well on, during swim class in school we got to play water games  or dive, this boy I like and I got to talk alone (or rather at a table alone in a crowded room), and I got to see a film I've wanted to see for a very long time with a good friend of mine! The down side is that I'm now very sore, tired, and still have to take my dose of Methotrexate, of which I enclosed a picture of. On the right is the amount of pills I need, on the top left is a capsule that contains them all (Which is very gross and plastic like). The pill on the bottom is a nasuea pill: It does not calm your stomach but rather calms your brain so you do not mentally make yourself sick. Writing this and looking at the picture is actually making me quite queasy: I suppose I'll leave this here then.

Thursday, 26 April 2012

Low and High

I don't often feel I'm on the same 'level'  as most of the kids I talk to. I'm not better than them by any mean. It's that many do not read newspapers or watch the news. They never heard of most of the things I want to talk about: Politics, current events, court trials, new discoveries. One of my friends seems to want to try and impress me and mentions a topic. The moment I engage and ask him what he knows of it, I find he knows so little of it and I think it was just to impress me. My friend who is a couple years older than me is no better and doesn't know all too much about the world.
There has only been one person I have met who 'gets' it. He has a realistic idea of government, not that it's all some conspirecy, but he knows of real politicans. He knows our economic stand point. It's amazing: The brief conversation we had on politics a few days ago very much recharged me. I'm thankful everyday that there are kids who like this stuff as much as I do: It makes me feel very normal, thus very happy.

Tuesday, 24 April 2012

Not Much, But A Start

I haven't anything to really post about today. Nothing particularly has caught my eye recently. Oh yes, please keep in mind it's not nice to call people you barely know swear words: It's very rude and gives a very ignorant impression. Especially when said person may be very special to your friend. No, I did not do this to my friend: My friend did this to me. I'm not happy about it. What so ever.
It ties with the lesson of not to gossip or judge a book by it's cover. Treating a person the way you would like to be treated. You know, these things you learn when you are... two, three years old?

Monday, 23 April 2012

Keeping Up Appearances

Though the title of this post is a reference to a programme I love dearly, this post is nothing to do with it. But it is television related.
I was watching television and I saw a commercial about a programme all about people's bodies and their problems. Not diseases but about their 'embarrassing bodies.' Why must we publize people's unfavourite features? Why can't we focus on the wonderful things about them? Let's not focus on this person's scars but rather on their beautiful eyes. But that's not how the world works, nor is it how television works.
I know, I know. There are much bigger differences. People get plastic surgeries on that programme for reasons which have bothered them for a long time and it's not because they want a larger bust or something. Real people who are tired of severe acne scars or odd colouring of the skin or anything else. This can be a great thing to show people actually! Saying 'I'm taking charge of my body!' It's great when you can repair your body so you'll be proud of it once again.
You see, I went through both sides of the story. I actually like medical documentaries and seeing differences between people. I don't actually think the programme is a bad thing. But I don't like the name. Perhaps something more caring or encouraging. I personally would go on a show called 'Living Past Arthritis' than 'My Dumb Body: Kids With Bodies of 80 Year Olds.'

Sunday, 22 April 2012

'The Crickets Have Arthritis.

'The Crickets Have Arthritis' is one of my favourite poems of all times. It is by Shayne Kozycan. It is not about arthritis, however I love it very much as it has a few moments of laughter and moments of tears. I'll end this post here, and leave it up to you to look it up. I suggest, if you do, rather than read it listen to him read it on Youtube. I'll leave you hear.

Friday, 20 April 2012

Not A Very Good Week

It hasn't been such a good week, as I already have told you in former posts. I got sick last night coming home from a party and I haven't felt good since. Of course I had to run a few errands this morning and during a meal in a resturant, I got extremely ill. I had side pain and nausea but I highly doubt it's serious since I've been running around all week. Oh well.

Thursday, 19 April 2012

Face It

Let's all face it, there comes times when you go offline, turn off your cell phone and just want to relax in your favourite chair to watch a great episode of Dr. Who followed by M*A*S*H - give or take a Harry Potter movie. But it's during that time when you have this party to host, and these visitors to tend to and this group outing planned all during the only days you have to relax. I love seeing people and getting together, but I'm tired and sore and just want a day to sit back. Did I mention I have a lot of art homework to finish? Oh,well.
 What do you do when things get busy?

Wednesday, 18 April 2012

Diagnosis: Unknown

Some things are easier to diagnose than others. They often tell you that you need to be patient to be a patient, and they say life goes on anyway. But in reality, things are really not that way. Yes it is true you need to be patient but I've read of people who have been sick since they were ten years old and were diagnosed when they were fifty or sixty years old: They had no relief of their pain, often had much damage to their organs and sometimes they were the simplest of diseases to diagnose and treat. And yes, their life did go on without a diagnosis or treatment but some of their stories are extremely sad and most of their lives were conducted in extreme pain. They got married, worked, traveled and some had babies (some didn't due to their disease causing infertility or just not being able to provide for a baby). Some lives didn't go on, not saying they died but mostly they dropped out of college because they were too weak to study, never held a career as they were in too much pain to function, or missed out on their own life because they couldn't get out of the bed in the morning.
In my own case, I was born with arthritis and had shown evidence of the disease since before I was born as ultra sounds had shown fluid in my hips and when I began to walk as I walked with a turned in foot or would drag it. Even with my first flare when I was eight, they excused it as a viral something. I say something because after they said 'viral' they would mumble some word with an excusing flick of the wrist. It wasn't until I was about 12when I started seeing a rhuematologist. He was great and did tell me I had some form of arthritis, but it wasn't until I was about 14 and decided to switch to another rhuematologist in the same hospital. He re-exaimed the evidence and after considering my pain to be rheumatoid arthritis, fibromyalgia nd probably a few other things, he came to the conclusion of psoriatic arthritis because my nail is clearly psoriatic: the former rhuematologist dismissed that several times. It took about fourteen years for that diagnosis. A rather simple one. It's time that doctors start to carefully think about their patients pain: Not everyone is exagerating.

Tuesday, 17 April 2012

Understand Myself

I never understood how severe my arthritis really is.
I didn't see how stiff I walk until watching a video of me walking. I didn't bend my knees too often. I asked my friend if I 'walked like a robot' all the time, and he nodded, not thinking much of it.
I didn't listen to the pops and cracks of my joints until my friend with arthritis walked beside me, and we seemed to mirror to sounds. I couldn't hear them until someone asked if we were okay.
I didn't realise how sore I always am until right now, sitting in my favourite position with my feet propped up on the most comfortable chair I have. I didn't pay attention but now that I think of it, I'm always like this: I got used to relaxing in pain. It's like resting after a procedure when your comfortable but still bothered by pain.
As I have said it once, I will say it again, I know my life could be so much worse. But this is me just coming to learn reality explain all of this.

Sunday, 15 April 2012

Yes, I have already posted about touch before but this is quite different. Yesterday evening I was at a party and I was dancing with some friends when someone pulled out a camera. Not wanting to be in the picture, my friends began hiding behind each other or pushing one another into the lense. I don't know how I got involved but they started touching my back, trying to shove me into the lense. I snapped at them not to touch my back as it really did hurt. But they didn't stop even when I tried to get away from the group. Finally someone did it: the one touch that hurt so badly, I stormed off and sat with my head cradled in my hands with my back arched. My mum knew I was in pain and tried to calm me down, and the mother of my best friend (my friend has arthritis) looked as if she was ready to kill (not literally) my friends.

Honestly, it wasn't all my friends and they didn't mean to hurt me but I have told them many a time to never, ever poke my back, grab my shoulder forcefully or pat/slap my back. It's not much of a request: some people don't like to be touched in general and that is respected. Some people don't like you to use a certain word in front of them, and mostly it is understood. I don't understand how a request from someone with a disability not to be forceful in touch is too hard to follow. I wish the world could understand.

Wednesday, 11 April 2012

Cheers

Cheers to bottles of water, to glasses of pink milk and cans of Coke-A-Cola. The three things teenagers live off of. Mostly, if you don't count the chips and Mars bars. Not really good for us, other than the water (until we add sweeteners), but we do it anyway. Since the day your born, they tell you eat healthy or you'll be obese. However, most of us aren't convinced or at least not in my group of friends. I'm actually more of a healthy person than what I say, but I have my major downfalls. People have to expect that kids don't want to eat healthy all the time: as long as none of us are pre-diabetic and a healthy size, you have to let the kids be kids which means making our own choices and having our bit of fun. Just saying, mostly since the nutrition education the school gives us is just unchanging, unpractical and makes it look like you'll live off only a small amount of food: I actually compared it to a World War II ration book and it was nearly the same. Really though, don't they remember being teenagers too?

Tuesday, 10 April 2012

Flip

Every year you get a year older. Wiser. Some kids grow up too fast. I like to take it all in while I can. Not a long post for today, but I would just like to write this.

Dear Mum and Dad,
I'm sorry the years flew.
I swear it was an accident.
I'd take it all back if I could.

Monday, 9 April 2012

Methotrexate Truth and Reality

They all say its the easy fix. Methotrexate, they claim, is a little miracle and all it takes is some little pills, a little liquid or an injection once a week. That's all, and there shouldn't be any side effects and if there are, we'll take care of it with this little pill. They coax you to take it and claim any side effect is all in your mind. But it's much more difficult than that, I promise you.It has side effects!

I take about 20.0 mg of this wonderful drug once a week. It's not a lot compared to the amount others take, and though I try and tough it out, today I simply cannot. I can't tell you which day will be my Methotrexate day: Some days I just can't handle taking it. It's an extreme battle for me to take it. I use a clear capsule to put all seven of the small tablets in. My mum does this for me because I can't handle the smell of it. When I actually take it, it's not the simple fact of swallow with a little water. It's choke it down or coax it down. I've tried to lure myself into eating it using apple sauce and Vanilla ice cream. I turned myself off of those for weeks and though I do like applesauce again, vanilla ice cream still makes me sick. I also hate drinking water, some juices, orangeade (orange soda) or Coke-A-Cola from a bottle. It's not that the Coke is gross, it's that from the moment I open the pill bottle, I get so nauseous. My stomach feels disgusted. I've vomited it so many times it's not even funny. It's violent too, often my whole body goes tense and I lose anything I've eaten in the hours before. Yes, it's gross. And it's true.

I've tried everything. Taking the medicines My rheumatologist gives me doesn't help. I've used relaxation videos and recordings, soaking in a warm bath, taking them two at a time and more.

If this horror of simply taking it does not convince you, please let me continue on. I get nausea for two days after, throwing up everything. Another side effect is severe bruising: I find them on my wrist from drawing with my hand pressed against the table. And if that's not enough, I've lost so much hair from it. My hair, thankfully, is so thick so it's not noticeable. But it's noticeable to me when it looks like Chewbacca has gone on parade in my house.

To top it all off, the doctor tells you it's all in your head. Yes, it is. I know it is. But I'm having a hard time convincing my body MTX is not bad. I could take the injections, but it's just too hard to. I used to take it that way and I'd have a nurse at a doctor's office inject it for me. I could have learnt to do it myself, but I took a MTX break and it has just been out of the question for me to take it like that again. Mostly since the smell of the rubbing alcohol drove me insane.

In conclusion, Methotrexate is a very good drug and helps me a lot. But never let anyone tell you 'its just a pill.' It's a commitment.

Friday, 6 April 2012

Fly

My friend has a few pet birds and I don't like it when she takes them from their cages: birds up close frighten me. But they are beautiful things. I wish I was a bird that way when the weather is cold, I just fly south. I wouldn't have to go to school either and it seems as though most birds stick together. Sometimes people just feed you for no reason. Also you sing and the tune is automatically pretty, It's already been said, but I wish I was as free as a bird.

Wednesday, 4 April 2012

Listening

I have a confession to make: I listen to books on tape. It's a rather geeky thing to do as audio books, in this region, are considered to be only for children who are learning to read or the elderly with weak eyes. But I don't have too much access to books unless I buy them. I don't always have the money for books, but I love reading novels. So when I found a website where I can cheaply listen to audio books, I happily obliged. Honestly, it is one of the best things I've done for myself. While I like reading, listening to books means I can continue stories while I do things such as work on this blog, paint, or close my eyes and just relax. So far I've listened to quite a few books with excellent results. :)

Tuesday, 3 April 2012

Getting Better All the Time

You could say. I'm getting there, but I have a long way to go. I'm still sick: I had bronchitis and I still have a cough from it. But you never get a moment's peace: I do gym and carry books ten times my weight without much complaint. Granted, my back is killing me and my eyes are bloodshot but you got to to go what you got to do: Keep calm and carry on.

Monday, 2 April 2012

Er, Ouch?

Let's get straight to the point: I am aching so badly. My back hurts so much today. I'm unsure if I'm just sore and tired or if I'm getting sick. I had to do swimming class in school today and it took a lot out of me. I actually took a nap which I do not do unless I'm very ill. That's all for today.