Showing posts from June, 2013

"My Meds Ran Out" Survival Guide

You may already know that I take Enbrel for arthritis. You may also know that it's working rather well- granted, I have my bad days but overall my symptoms are more manageable and I get no unpleasant side effects. However, what you did not know was that due to some bad planning ahead I am going to be without Enbrel for about a week and a half. Unfortunately it takes a week without Enbrel to experience symptoms at full force, and takes a week after starting again to get relief. This is going to be a fun three weeks. So, in honour of my 'miscommunication' with the pharmacy, I present to you now the 'My Meds Ran Out' survival guide. Back-Up . Make sure you have any NSAIDs your doctor prescribed or are otherwise able to take. Keep them close by in case you need them. Also, if it helps, write down what times you took them so you know when it should begin to wear off and when it's safe to take another if you need it. Fire and Ice . Have your ice packs and hea

Roller Coaster Rules

I love amusement parks. I enjoy the sights, sounds, food and generally speaking the environment. I also love rides. Whilst many rides will ask that people with back problems refrain from riding, I tend to ignore that. I really enjoy rides that spin or go down steep hills and all that sort of thing. But, of course, I do take certain precautions. I call them Rollercoaster Rules. 1. Before I go to an amusement park, I tend to read up on it. There are rides I simply won't do simply for healthy reasons and I like to know before so there are no surprises or disappointments. 2. My general rule is if it goes upside down, it's a no-no. This is because I understand the type and amount of force on your body, and I believe it would probably cause a painful spine. No fun in that. 3. Spinning rides are usually okay. Even the ones that stick you against the wall are fine because they keep your back aligned. Though there are exceptions. 4. Jerky rides are most likely not a good idea. T

Arthritis World vs. 'Normal' World

I suppose you could compare being chronically ill to being a bird in a cage. The bird wants to soar high in the sky, but the cage keeps you away. Having a chronic illness is similar: you want to soar but you're too sore. Or, you know, sick or something. It doesn't really matter what's holding you back, it's the fact something is. But the cage is also a symbol of something else: How different your life is compared to the lives of others. I forgot what it's like to be healthy. I cannot tell you what 'healthy' life is like. I assume it's a lot like life now except without pain, hospitals, missing out and planning around abilites. I also assume you fit in better with the 'healthy' world. But I don't know for sure. The 'healthy world' and 'chronically ill world' are very different. I'm always reminded how different they are by people's reactions to my 'arthritis' talk. Sometimes I'll tell them what's happe

Our Amazing Bodies

At the moment, I'm wondering if I cut my foot off at the ankle joint, would the arthritis there be gone or would I have half as much pain? Either way, it sounds extremely appealing. I marvel at the strength of the human body. It's amazing what we can put it through. What's more amazing is what it can put us through. I find it strange how one can be in so much pain but manage to get up and do what needs to be done. Whether they've got a slight limp or have to drag themselves on the furniture to stay up. And just staying half awake is a miracle on some days, and what an amazing strength that is when your body needs the healing power of sleep.  But our bodies are not indestructible. We must take good care of them. In the summer, it's easier to forget  that we are in control of how we treat our bodies. So please be kind to your body this summer: Don't force yourself into cold water (whether at the beach or pool). For me, cold water is extremely painful.

Why I'm Not Becoming a Nurse

I remember being about three years old and announcing that when I grew up, I wanted to be a doctor. Even as a young child, I thought medicine was absolutely fascinating. Though my title changed from doctor to nurse, I loved the idea of caring for people. I wasn't interested in anatomy as much as I was interested in treatments and procedures. In fact, at the age of ten I could preform virtual heart surgery in forty seconds flat, tell you what IV and PICC stand for (intravenous and peripherally inserted central catheter- I never forgot), and I read medical journals all the time. It was adorable. Also, I thought hospitals were cool. I still think they are. I always knew I was sick- we didn't have a name for it, but pain doesn't happen for no reason. I liked the idea that I would make sure no one would walk around knowing their sick but getting no answers. I wanted to be that miracle nurse or doctor who never gave up and let their patients suffer. When I was eleven and going

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

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 b

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 i

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 fig

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

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

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 a

The Game Called Arthritis

Don't hate the player, hate the game. And do I hate the game that is arthritis. It's a never ending game, it seems. And like games, there are winners and losers. There are days I'm most certainly winning, and there are days I'm far from any finish line or trophy. But with any game, there are rules that must be strictly followed. And they are as follows: 1.) Expect the unexpected.  2.) Seeing a doctor for one disease and coming out with two is completely permitted. 3.) No cheating of any sort is allowed- magic pills, drinks or anything of the sort will not work. 4.) Pushing your limits will not be tolerated. You will be punished. 5.) The game may change at any time without warning to you. 6.) The game will go on. Winning is not a right- it's a reward some recieve for a well fought battle. 7.) No quiting allowed. You have the rules, now go out and play your best.