Chronically Extraordinary

I was in a life drawing class with one of my friends. They noticed my nifty eraser grip, which makes it much easier to hold and use.

"Wow, cool grip." They said. We were setting up easels and getting ready for the class to start.

"Yes," I said, "Yes it is. It's so I can hold it without killing my hands."

"Well, aren't you special with your arthritis?" They remarked.

"Oh, I'm not just special. I'm extraordinary."

I don't know who you are. I mean, I might. But the odds are I probably don't. If I asked you to introduce yourself in as many one or two word sentences as you could, you would probably define your roles and highly important traits. Short and straight to the point. 'Mum.' 'Husband.' 'Teacher.' 'Student.' 'Athletic.' 'Outgoing.' 'Musician.' 'Young.' 'Artistic.' Just a few words would give me a better understanding of who you are.

And let's face it- illness is a part of us. We use words to describe how it affects our lives. 'Chronically ill.' 'Disabled.' 'Handicap.' 'Sick.' 'Arthritic.' 'Sufferer.' 'Sickie.' And tons of others I could name right off the top of my head. It's amazing how many words we use! When needing to arrange accommodations we say 'I'm Disabled.' When we try and explain why we have been 'sick for so long' we say 'I'm Chronically Ill.' But when do we ever say that we are special? I don't think I've ever heard that! When do we ever use a positive word when regarding living with an illness?! When they jokingly made that remark, it made me realise that I am special because I have arthritis. My chronically ill sisters and brothers go through so much, and yet are not 'out of the average?' Of course not! We're great, I preach to you! We are humans who have super strength to push ourselves -whether on a good day or in a flare- to go on with our lives. We are as precious and strong as diamonds. We are very extraordinary people, and others have a privilege to know us.

The Alphabet

A few days ago I was tagged by Kelby of PeachyPain to do a survey. It was made quite clear that if I did not complete this survey, I would be cursed with bad breathe for five years. And so- much to the relief of my dentist- I will complete it now. And remember, if you break the chain you will be cursed with bad breath for five years. I'd better throw in that you will also be cursed so all your bottle caps will not be arthritis friendly.

The Alphabet Meme:

A: Attached or Single – Arthur and I are quite attached.

B: Best Friend - Two awesome girls- one I met in school and one I met through the Arthritis Foundation.

C: Cake or pie – Cake, by far. A small piece and a glass of milk at the end of the day is bliss.

D: Day of choice – Saturday- you get to sleep and go out.

E: Essential item – I'm torn between my sketch book and my bed.

F: Favorite color – Tough choice but I'd say coral since my wardrobe is primarily coral right now (summer clothes!).

G: Gummy bears or worms – Gummy bears since I don't think worms are pleasent.

H: Hometown - home is where the heart is.

I: Favorite indulgence- Definitely having a whole bar of chocolate.

J: January or July – July because the weather is better.

K: Kids – None, but hopefully one day in many, many years.

L: Life isn’t complete without… -  People you love and who love you.

M: Marriage date – Not yet, but maybe one day.

N: Number of handbags – I only have a few- I can't be botherer to swap so I mostly use one.

O: Oranges or apples – Apples: so sweet and crunchy.

P: Phobias – Bugs... They're so gross.

Q: Quotes – “It does not do to dwell on dreams and forget to live." -Albus Dumbledore

R: Reason to smile – My lovely little niece. Sunny days. Famous art. Favourite books. Great friends.

S: Season of choice – Summer- no school, no stress.

T: Tag people – Arianna, Jenni, Ms. Rainbow

U: Unknown fact about me – I am a huge traveler- I have a world map in my room marked with all the places I want to go and the places I have gone.

V: Vegetable – Tomatoes- raw in a salad and a great sauce.

W: Worst habit - I tend to show my emotions in my face- if I don't like something, you can tell.

X: X-ray or ultrasound – Ultrasound since you see what happens whilst they're doing it.

Y: Your favorite food – Beef stew- just the way mum makes it.

Z: Zodiac sign – I don't read my horoscope or anything like that, but if I remember correctly I am an Aires.

Happy Saturday.

When They "Get" That Arthritis Hurts

There aren't many times people really get what arthritis is like. But there are a rare few who do. And I can't stress how much I appreciate people like them. And I'm very lucky to have come across a few.

When I was about twelve years old I had this one teacher who absolutely loved me. She was sweet one day but could be very harsh the next, so I was rather wary of her. Regardless of her mood, however, she always had a smile and word of encouragement for me. Toward January of that year, she went in for carpal tunnel surgery. It didn't sound pleasent. Whilst talking to her after the surgery when she came back to teach, she told me about how painful her wrists were. That's when I told her I have juvenile arthritis. Her reaction was that of pure "I Get It." She was so upset to hear of the arthritis. So much so that she nominated me for an international student trip! She told me "You have perfect grades and go through all that pain everyday- you deserve it." That was one of the nicest things someone had ever done for me. Even though I couldn't go (you had to be 13 at the time of travel, of which I was not) I'm still so honoured that someone wanted to give me that opportunity.

The next year when I was thirteen, I also had another amazing teacher. I was often absent due to medical appointments, and when I was in school I was really tired, sick and just run down. This teacher always made it easy for me to catch up, never minded if I didn't want to do participate because I was just too run down and often let me work alone instead of in a group, which was easier when I wasn't feeling good. Sometimes I would write my papers on experiences in the hospital when we had to write about our lives, and she always would write notes of encouragement on my papers before handing them back. But I think what was the best is that she made her classroom a safe haven for me- no need to worry, no having to stress, no one could pick on me whatsoever, I could relax, and there was always someone listening.

I can't get over the amazing people who come into my life. There have been many more than just two- some in my physical world, some on this blog but all great people I care about.

Mothers' Juvenile Arthritis Pain

There are days I forget that even if they don't have it, Arthur is hurting a lot of people. But if there is anyone who is hurt by my Arthur more than me, it's my mum.

It's often said having a chronically ill child is a full time job.  And I believe it completely. Whilst they may not experience the pain their child goes through physically, parents see their child in pain and ill more than most people can imagine. They experience good days and bad days. And they are the ones who have to comfort and stay calm for their child through stressful and negative periods. It's heartbreaking.

I tend to forget how much my mum is hurting too. Every time I realise it, it hits me like a ton of bricks. Every time I see her eyes get watery when the Enbrel causes pain. Every time someone complains about having a little ache and she tells them her daughter has juvenile arthritis. Every time I realise she plans things around my abilities so I can have fun too. Everytime I see her fight to get what I need to be without pain. I could go on and on but I'd rather not.

To all the mums, dads, siblings, and supportive family and friends of people with arthritis- thank you. You're so strong for carrying the pains that arthritis gives. We couldn't do it with out you.

How to Make Your Family Understand Arthritis

The other night I had family over. I have quite a large assortment of uncles and aunts, which means I have various cousins as well. Rest assured, there were a lot of people. And it was quite nice as well- we all truly enjoyed one another's company. And then there was the nice offer of sleeping over a relative's house so it would be easier to go to an event occurring that morning. I was thrilled and quickly threw together my things. And then I remembered something- it was Enbrel night.

It had been defrosting for a while and needed to be done- I had missed it the night before. So, I got ready to do my Enbrel before leaving. I held ice on my stomach to try and numb the spot and that's when I began attracting attention. One of my aunts had actually thought I hurt myself. When one of my uncles asked what I was doing, my mum explained and when he went to leave the room saying "I can't watch," my mum told him "oh no, you're going to watch. You're going to see what I see twice a week, every week." Sometimes I forget how that needle hurts her too.

So, with the quick dagger like motion, I stuck the needle in once I was all nice and numb and began to slowly inject the Enbrel. Some aunts and uncles closed their eyes or hid their faces. One aunt actually walked in whilst I was doing it and was horrified. One of my littlest cousins, aged eight, walked up to me, took a good look and was quite calm when she said "Why is it taking so long?" I smiled and told her that if I do it slowly it doesn't hurt as much, and I appreciated the brutal honesty of children.

When I took out the needle, I began to bleed like mad. Everyone, including me, was horrified. I had bleed after Enbrel before but not to the extent it dribbled (onto my favourite jeans). I must've scrapped myself as I was removing it. However my aunts and uncles helped by getting a paper towel to help the bleeding, and removing the paper from the plaster (band-aid).

It was only when they witnessed this that they realised Elizabeth isn't actually faking. That there is something wrong, and it affects my life in serious ways. That medicine- treatment- does not begin and end in the hospital. It comes home too, it follows me everywhere. And they had to watch me stab myself in my stomach to see it. And if that's what it takes, I'm glad to show them. After all, blood is thicker than water.

One Month Rheumatologist

Confession: Since I was about eleven years old, I have never gone longer than three months without a doctors appointment.

Confession: I forget what it's like to not have to be see so often.

My record for the longest time without a rheumatology appointment is three months, but that has on

only happened a handful of times. Mostly I go every month or two, depending on my progress. I honestly can't imagine life without frequent hospital visits. And I don't think that's a bad thing either. 

When we repeatedly do things that are typically unnatural and cause for alarm, eventually they become nature. A habit even. Whilst others consider going to the hospital quite a lot a bad thing, I began to see it as a good thing: It's an essential part in treatment of arthritis, and treatment is a good thing. I'm not ashamed that I need to be seen so often- my body is different from everyone's and it just requires extra care. And there are people who are seen more often than that, and that's okay too. Taking care of ourselves is a very good thing. Everyone cares for theirselves in different ways. I just wish everyone understood. A lot of the time my family are upset to hear that "yes, I still have to go," and "yes, I'm still taking the medicine," despite adding "but I'm getting better." And after the seven billionth time, the same reaction is quite boring.

But I know it's not so much going that is the bad part. It's after. After hearing bad news. Being sent for yet another test. And worse, not being taken seriously. Sometimes it's not having to go, it's having to deal with the aftermath. Occasionally it's a mix of good and bad that can leave you confused. It's more confusing than your doctor's penmanship.

The Diary of an Arthritic, Aged 11

The other day whilst going through some old notebooks and folders, I found my diary. I was eleven years old when I began to write in it, and it was a few months after I began seeing a rheumatologist. We didn't know what type of arthritis I had at that point, and we wouldn't for about two more years. Anyway, I couldn't help but share some of my eleven years old thoughts with you. I'm sure that little Elizabeth wouldn't mind.

"We played football today in gym. The teacher wouldn't let me sit out when I began getting really painful, so I started to think about Beatles songs and that made me feel better. I was able to finish the game this time too."

Aww. Good job little Elizabeth! If you want to read about that mean teacher, click here. By the way, that game only consisted of following behind a group of children who thought it was the Olympics.

"I don't know how I feel about having arthritis. I'm not in denial, I'm not happy, but I am happy that I have a name for [the pain]. It's hard. I just don't know how to feel. What's worse is [my friend] constantly brags that her ankle hurts to her friend with arthritis... I don't want to hear it; no one complains about every single pain they have, so why should she?"

Oh Elizabeth, you're going to come across a lot of people like that. And you're going to go from writing about it in your diary to smirking and saying "Yeah? I've got a pain in my bum too."

"I went to see the rheumatologist today. He said there was no improvement, but it hasn't gotten much worse so I guess I am okay. It's scary not knowing what's going to happen or if you're going to get worse. I don't like the insecurity. I'm afraid. I want the doctor to do something that will magically give us answers. Or take away the pain. Or something. But I think it's impossible."

The wise words of a kid who was in way over her head. And even many years after this was written, I can't help but still relate.

I suppose I'll leave you here. I think the little girl who wrote this may be embarrassed if I share too much.