Sunday, 28 October 2012

Horrible Hospital

I've read several things today that disturb me, one of these things was that a young girl had a terrible medical accident caused by a nurse at a hospital I had gone to. The accident was one hundred per cent preventable, not to go into too much detail but please tell me what person uses scissors to remove a piece of peeling, sterile tape from a child's face?
This hospital is a pediatrics hospital, of which is usually the first parents choose to send their children to. I had been a patient there since I was first born, and we never truly had a good experience. They diagnosed my arthritis as sports injuries (despite the fact I did not play any sports or injure myself) and actually sent me home without looking at me when I had my first flare up and was extremely ill, dehydrated and so weak my father needed to carry me. I found many other children and teenagers had similiar experiences here, one teenager actually denied alternative treatments, instead forced to take a very aggresive medicine (There were plenty of alternatives that worked much better. I do not even mean diet or herebal remedies, this hospital denied her other medications). Rest assured, I do not attend this hospital. My mother had enough of this terrible experience and I have not been since I was about eleven years old.
I think it kind of goes to show that if you have enough money (this hospital gets a lot of donations) and put on a good show, people will believe anything you tell them. I've learnt to see past it, having been taught how business and advertisement works in school. I hope people begin to see past the show and stop continuing to get terrible care for their child over and over again. I hope they find the alternative children's hospital that put more money and effort and care into patients than into fancy presentations.

Saturday, 27 October 2012

Quick

I seem to be getting behind in writing. It's not that I do not want to, it's that I have school, homework, art class, art homework, friends wanting social time as well as a nagging disease which gives me a lot of pain and fatigue after that.
First off I would like to update about my situation in art class: Everybody absolutely loves my new design more than the one the girl had stole from me (but they still like it). I feel this is a double great situation for me since it's BOTH my idea.
Sorry to have a short, non medical (mostly) post, but I promise more later.

Monday, 22 October 2012

Cheating in Art Class

I apologise for being away for so long, I've had a very long and busy week between school, school work, a family gathering and also seeing a film I've wanted to see for quite a while with one of my best friends.
At the moment, I have many Enbrel side effects including headaches and fatigue. In fact I fell asleep after school, of which I never do unless I'm extremely ill.
Tonight I have worked on my own clothing design for a shirt. This is completely and utterly unnecessary work. The reason I am doing it is because a girl in my class took credit for an idea I came up with and drawings I did last year. She didn't mention it was my idea, she took all the credit and continued to saying that she was the only person who cared. I am not letting her win this. I am bringing all my former drafts to class as well as my NEW ideas, which in my mind are brillant. I'm not letting her get away with this. If we're not allowed to cheat on tests, why should we be allowed to cheat in art? We're not. It's called plagarism. In school we get detention and no credit for our assignments, in the real world you get sued for everything. I figure I ought to stick up for my rights. Finally.

Tuesday, 16 October 2012

Enbrel in the Home

I've beem doing my own Enbrel injections lately at the doctor's office, but tonight I did it at home. I can't say it was my best Enbrel experience but it definatly was a success. I actually recorded it on my phone to show friends tomorrow before school, so I'm rather excited to see their reactions as some are interested and others usually grossed out.
I HAVE gotten side effects on Enbrel: A lot of fatigue and headaches at first that are beginning to lessen, as well as some general weakness and muscle pain. Also the first few days I got moderate muscle cramps in my feet, but it did not last. Nothing out of the ordinary, hopefully they will lessen the longer I take Enbrel.
On a positive note, I've been very busy the past week and keeping myself in great spirits with lots of things planned for the coming months. Nothing is better for a young person than looking forward and taking control of their future. :)

Sunday, 14 October 2012

Being A Patient....

Makes you think differently about some words.

"I'm going to hospital."
The hospital.
That hospital.
Hospital.
This hospital.
Over to hospital.

I use one of these expression nearly every day. And no matter what name you give it, no matter how you refer to it, one thing is for certain: 'Hospital' is a severe word. It makes people expect the worse. I think a lot of people just harbour a lot of terrible thoughts about hospitals. Sometimes you can get people use to this term without acting as if it were a big deal; I've gotten probably 75 per cent of my friends now joke with me about it, as well as understand that my visiting the hospital is nothing to get nervous about and feel is a terrible, dreadful thing. Maybe it is a terrible, dreadful thing? I'm just very used to it. I don't feel especially nervous going to the hospital, unless maybe if I forget a jumper (sweater) in case it's very cold inside or if I'm missing a test in school while I'm gone.

In all honesty I look at hospital visits in a positive light since I have very good relationships with my doctors and most of the nurses, technicians and so on. I don't get the feeling of being a 'lab rat' being tested on (the majority of the time, ha ha), or being 'Female Patient #2759823578435943594375949.' I actually adore my hospital and have drawn many pictures of it whilst there. I don't get the feeling of dreadful, terrible things there. I get hope. I know several other patients who have said the same thing as well.

I guess the point of this post is to say I'm alright with being a patient, that it's okay that I go to the hospital a lot, that I like to joke about it and I'd be delighted if you did too, and that I honestly do not dread nor get terribly nervous over visits and I don't want anyone to get upset about it. Sorry it's not too specific and jumps around a lot: My thoughts came rapidly.

Thursday, 11 October 2012

Enbrel Success!

My last Enbrel injection was one I certainly will never forget: I injected myself with it for the first time. Actually, I injected my own needle for the first time in my life.
It was nerve wracking but I had my mum and nurse right there, and I had experienced Enbrel before. I knew exactly what to do as I had a bit of training and the needle is actually very small.
I used my stomach (my current favourite injection spot). I stood for a minute pondering if I was really ready for this. But in a quick moment of bravery, I used 'the swift, dagger like motion' I was taught. When I realised what I had done, I got nervous and started shaking a little. I injected Enbrel slowly, as it is known to burn and last time I got a warm feeling. I didn't feel  a thing: I didn't even have any pain from inserting the needle. What did hurt was taking it out as my hand shook the tiniest bit, but no injury so I was fine. Just a slight pain.
The nurse (who knows me very well) was so proud, as was my mum who was recovering from a heart attack.
I'm a bit proud too. :)

Monday, 8 October 2012

A Letter to Arthritis

Dear Juvenile Psoriatic Arthritis,

You have caused me so much pain, anxiety, depression, illness, isolation, and guilt.

Thank you. You've made me a better, stronger person than I ever would have been without you.

I lhave earnt to push past pain and function as normally as I can because people can't see you hurting me: They don't understand the chronic pain. You showed me not to have self pity because as bad as you are, I could have it much worse!  I've always felt guilty to ask for a break, as if I'm ruining the plans, so I simply don't say anything now. (Provided it is not extreme pain.)

My whole life you've made me feel odd, weird, like a cry baby for complaining sometimes when the pain got serious, and like I was alone. You isolated me from other children my age because I couldn't always participate, and when I tried you made me run awkwardly and slowly which made the children (to my horror) call me 'Limpy' and 'Faker' and other names. But thank you for that: I matured much faster and became accepting of all people. These experiences also gave me patience, compassion and a want to help.

As much as I thank though, it does not mean I'd like you to stay much longer. In fact, as you know we've been trying to get rid of your presence. I do not actually like you or your actions. We are all baffled why all the medications we have tried have not gotten you to go away! I don't think you understand that the treatments are not supposed to be a treat for you, as they're certainly no holidy for me. I don't ask for you to be punished, as you have punished me since I was a baby. I just ask that you go away nicely. Is that so much to ask?

Sincerly,
Elizabeth

Sunday, 7 October 2012

Bad Day

Today I'm having a rather sore day. Rather than describe this I would like to put this in two simple words:

Arthritis hurts.

Thursday, 4 October 2012

My First Enbrel Injection

Yesterday I started Enbrel. I have to say, it wasn't as bad as I thought.
The needle was very short and skinny, and there wasn't much Enbrel to inject.
The nurse allowed me to try and inject myself with her supervision. I got the skin ready and I was so close to injecting myself when I chickened out. The nurse said it really looked like I would have though.
She injected it for me, which has given me a lot of confidence for next time as now I know what discomfort to expect. The needle itself did not hurt, and the nurse injected it very slowly so rather than a burning feeling a lot of people report, I got a very warm sensation that was somewhat uncomfortable but only last a few minutes. Honestly, nothing to get worked up over.
Hopefully Enbrel will help, as the last few nights have been very painful for me, and currently morning pain and stiffness is at it's worse. It will take a while to help, but I'm truly hoping that Enbrel will help.

Wednesday, 3 October 2012

Remission

The whole goal of trying medicines and treatments is remission. The 'R' word. The big 'R.' Remission for arthritis is defined as no findings of arthritis what so ever- pain, inflammation, stiffness, and absolutely no evidence of the disease being active (including things commonly found in arthritis patients, like related eye problems). The inactivity of the disease must continue for 6 months continuosly  while on medication OR 12 months while off of medication. So yes, while some patients can be in remission and never have to worry about taking medicine, others will have to continue to take medicine. Perhaps forever.

I hope I'll go into remission. People around me seem to be more hopeful about remission than I am. In reality, I would love to go into remission and it might happen one day but I don't want to get too excited incase it just doesn't happen. Some tell me they have a 'good feeling' I will go into remission, that I should just trust them. Like I said, I don't doubt it, I just don't want to get too over excited it won't happen. A lot of my friends went into remission for a little while but got flare ups. Some people go years and one day it happens. Anything can happen.

Tuesday, 2 October 2012

Enbrel in the Week

I'm going to start Enbrel this week. Though I said before I was quite positive about taking Enbrel, as the actual happening of it comes closer and closer I've been getting nervous. I don't think I'm as nervous about the side effects as I am if it hurts. I admit it to the world: I am a teenager who has had arthritis for their whole life, and yet I'm afriad of a little needle -that might make everything better- being a bit painful. Kind of pathetic, in my opinion.

But in a way I'm excited. I want to try and learn to inject Enbrel myself (Try to learn, no promises), and I think not only is that a great idea but I think it's cool. I mean, call me crazy, but in my opinon I think it's impressive when someone can inject themselves [with perscribed medicines/treatments].