Saturday, 29 September 2012

Arthur is Miserable Today

Today is a miserable arthritis day. I've been sore since I've woken up.
I'm not feeling well at all as I am actually sick, but Arthur isn't helping what so ever. Even the joints that aren't affected by arthritis are aching and stiff (Shoulders, elbows, wrist, hands).
But that's alright since I didn't have much of anything planned for today anyway.

I feel like this picture today to tell you the truth. This picture I did a few years ago when I was in a lot of pain and stuck at a relatives house. It's not the best, in fact it was probably done in a few minutes but it made me feel better to put it down on paper. This was done in oil pastels, which did ease the odd pain I had in my hands because it's soft and it warmed as I drew, which soothed my muscles.

Thursday, 27 September 2012

"The Fault in Our Stars" Arthritis Review

I recently read a book called The Fault in Our Stars by John Green (Who is one of my favourite Youtube stars). Anyway, not to spoil the story, the main character has cancer. She is very straightforward with the idea of dying and suffering, also making jokes of it.
What made me love the book so much is how much I related to her. She told us readers so many truths of chronic illness. Things that I've been through, even if it wasn't cancer. Quite a few times I found myself crying at parts people would not cry at because I knew what the character felt. I knew the emotions, the fears, the pains.
One of the things the character said was that in the ER they always ask on a scale of one to ten, how bad is your pain? And that when she couldn't breathe and was in terrible pain, she held up nine fingers (she couldn't talk because of how badly she could not breathe). Later the nurse came in and said she was a strong person because she gave pain that was way more than ten a nine. The character then said that she was saving her ten, because she knew there was worse pain out there.
I relate to this so well.
I've never said ten because I knew somewhere, there was someone in way worse pain than me. I said that I'd allow myself to say 'ten' when I felt that worse pain ever.
I reccomend this book one hundred per cent.

Wednesday, 26 September 2012

Thoughts I Can't Write

There are times when I'm not in the mood to post. This is not one of them.
This is one of the times when I have so much passion for a thought that I cannot convey it in words.
What I should do is create an image or a set of images.
This is what I will do. Someday.
Not today, I've far too much to do today but one day I will get to say what I feel the only way I can.
I feel this way about a lot of things, so it's not a particuarly infrequent challenge.
But it is frustrating, none the less.
I'm mad because I want to post something very passionate and full of wisdom but I can't.
Someone can't tell you this feeling, this thought, this idea.
You have to feel it, know it.

Sunday, 23 September 2012

My Favourite Embarrassing Year

A few years ago I had my favourite 'embarrassing' years at school. I say my favourite because while when it was happening I felt like I could've died on the spot, now I chuckle when I think of them.
For example as I was hurrying down the corridor to my next class, I didn't notice how close I was to the lockers. My bag got caught on the lock and I didn't know, so as I briskly walked I got pulled back into the boy behind me, who was not pleased one bit.
Another time my bag strap got caught on the door handle as I walked in a crowded corridor. Instead of stopping like a normal person to simply fix it, I kept pulling to get through as I felt the crowd clossing in around me. An older boy from behind me calmly said, 'wait, I can unhook it' and he got my bag free from the door handle. When I looked at him and saw that he was a very good looking boy, practically a man, I nearly died knowing that I looked like an idiot in front of him.
My favourite moment however, was doing a group project with a few other girls. Mostly the other's just chatted so I had to do most of the work and I expected that they hadn't changed what I had done when I was absent. The day I got to present it, I stood pouring my heart into a well prepared presentation I had worked to hard on. It was going well and I was getting to my conclusion slide which I had worked so hard on, I found it changed to a picture of a very heavy, shirtless man eating a sandwich.

Friday, 21 September 2012

Kidneys, Ultrasounds and Enbrel

Today's hospital visit was mostly great. I found that any crystals once in my kidneys had flushed so my kidneys are fine. Also I was prescribed Enbrel to treat my psoriatic arthritis, which I am positive about. My rhuematologist and neprhologist (Kidney doctor) have been working very close together to ensure my kidneys will not be damaged with all the medicines. I'm very grateful to have two very caring doctors.
However, there were rather unhappy moments. This morning I needed a kideny ultrasound, which seemed to be fine until the technican began to appear uneasy. He left for a moment and came back with two doctors, who were all worried about something not appearing healthy.
It's a very scary and vulnerable moment to have several doctors stare at your results, practically ignoring you because whatever is on the screen is scaring them beyond belief.
It seemed to be nothing, thankfully.
Another rather unhappy time was when my kidney doctor immediately had me seen by another doctor, as he found I may have problems not only with my kidneys but with another system. This doctor who I was rushed to see seemed very unconcerned and very uninterested, as compared to my kidney doctor. He dismissed me as being healthy. But I have faith in my doctor's that if it is truly something concerniing, that they will persue it.
Over all I wouldn't call it a bad day, besides for being extremely tired as I had to leave my home very early in the morning to get to hospital.

On I side note, when I say I'm positive about taking Enbrel, I do mean it. I'm not trying to put on a brave face for everyone. I'm hopeful that this drug will help me, and it is clear that my doctor feels this is the best treatment option for me right now. Yes, there are nasty side effects, but side effects are not set in stone: every person is different and is affected differently. And of course I'm nervous it will hurt, but anything that hurts a little and takes away a lot of pain is well worth it to me.

Thursday, 20 September 2012

Tomorrow May Change Everything

Tomorrow I shall leave my school and friends.
For I am going to the hospital.
Again.
It's actually a day filled with various appointments, so hopefully I'll bring nothing but very good news.
While I'm seeing my usual rheumatologist, I'm also seeing my kidney specialist to determine correct treatments for my current kidney affliction (Calcium Crystals). I'm trying to stay positive that everything will be just fine.
Also tomorrow I may be put on Enbrel, an immune surpressant. I'm nervous as some of the side effects don't seem too fun. One risk while taking Enbrel is a higher cancer risk, however this doesn't bother me as much as the higher chance of appendicitis (which requires an emergency operation to remove).
I'm not so much worried about actually getting appendicitis and being in a lot of pain. More so, I've been laughing and joking with my friends saying I'll get it while walkiing in a crowded corridor at school and people will have to walk over me or that I'll get it in swimming class while diving.
I like trying to turn my medical frown upside down. :)

Thursday, 13 September 2012

Being A Patient...

Is embarrassing.
Think about it.
When you are a patient, privacy is not a right. It is a privilege.
Not only do you have to change into a gown  that is open in the back, but you're asked a lot of questions.
Sometimes they're not terribly revealing or embarrassing, but it's just the fact that every little thing about you is being written down on a piece of paper as if it isn't a big deal. As if you were just writing down 'the televison is on' a doctor writes down 'the patient has dealt with chronic pain for years' casually. It's as if you are nothing.
I also don't know about anyone else, but I'm very embarrassed admitting I'm in pain. It makes me feel weak and as if people see it as a very bad thing, like I SHOULD be ashamed!
This might actually be a part one, because I have way more to say about this subject.

Monday, 10 September 2012

People Change

"People can change."
A lyric from a song I love. I think it says enough in itself that I don't have to emphasize. Thought to add to it, I would like to add the following lyric.
"People don't change."
This, I feel, is ignorant. Think of how much you have changed in a year. In two years. Throughout your life.
Hopefully as people change, they become more compassionate.
Thoughtful.
Understanding.
However this takes time.
Sometimes I'm worrying that's what we are running out of.

Wednesday, 5 September 2012

Being a Patient....

Is nerve wracking.
Most people have trouble waiting for their love interest to write back to them or waiting for a train.
Patients have trouble waiting for test results that could mean the struggle of their lives.
Imagine what it is like to wait several days for a doctor to call and tell you whether or not you have cancer.
And imagine sitting waiting, wondering if this time next week you'll be sitting in a hospital bed.
Or imagine waiting for further instructions to reduce your chances of pain. You feel the longer it takes, the more pain you will be in.
It's so  unbearable that after a week or two of waiting, you call and ask for the results and they'll tell you they will call you back. And they do. Two or three  days after the fact.
But not only that, you're nervous for the future. Will I be in a lot of pain... tomorrow. In a year. Forever?
And not only that but 'will this medicine cause cancer?' and 'will I pass this onto my children?' constantly runs through your brain, not to mention 'How will I ever afford this all?' Not just money wise, but emotionally, mentally and even physically.b

Tuesday, 4 September 2012

I Love School

I'm a full time school student and plan on attending college after I finish Secondary school (high school).
Many kids don't like school and even I dread going back after holiday, but once I am in school again I love it. I love to learn very much, and using skills I aquired in class. I enjoy going to swimming class despite walking around with wet hair. I adore seeing my friends, other students  and some teacher. I even love wearing my school clothes, looking very sharp day after day.
Honestly, I love school.
And taking several hours of art everyday helps. :)

Monday, 3 September 2012

Guilty of What I Cannot Help

I have often read of people with arthritis having constant flare-ups, extreme swelling and muscles so weak they have so much trouble doing many things. And I count my blessings I do not have these problems to an extreme extent. With that comes a guilty feeling.
I've only had one flare-up in my life, of which lasted a month and required hospitalization. I've never had one again. It doesn't mean I'll never get another one though.

The point of this post is that I feel extremely guilty to call myself an arthritis patient feeling I have not had half the experience most other's seem to have.

Saturday, 1 September 2012

The Strongest Woman I Ever Knew

In the photograph I keep beside my bed the youthful face looks back at me, her rosy lips and blue eyes.
I can only imagine her hair was beautifully soft in gentle, blonde ringlets.
Despite the gentle, lavender dress she donned, she wore a nervous ridgedness and stern face.
She was probably the strongest woman I've ever known, with a life as geniune as she was.
The legend of this great woman lives, not through the names of the daughters and sons, but in her own right.
She is my hero.
I'm proud to wear her name, and I only hope I can give her name the great justice it deserves.

Everyday I miss her, but today I especially miss my beloved grandmother. My Gram.
My grandmother often comes to visit, and she'll leave in a day or two, but my Gram never leaves for she is always in my heart.