The Girl With Arthritis

I had just spent the day in an art museum. I love art, obviously, and getting to see art from history and present day was wonderful. I think the historical art pieces are my favourite between the two, just because sometimes I like to just look at something pretty and not have to think about it's meaning. As I was looking around at the section on ancient Eygpt, I had a sudden realisation: Ancient Eygptians had arthritis. Seriously! Think about it. Look at any ancient Eygptian picture of people: They're very stiff looking. Even their statues were very stiff and rigid. They loved the heat, Wore linen pyjamas all day, and knew more about medicine than many cultures at the time, using myrtle leaves as a basic form of aspirin and lime stone as antacid. Need more proof? We even have a dance move like how they're pictured: The poor things! We've been picking on them this whole time not even realising it.    Well, maybe not all of them had it, but someone had to. :) ...

Sleep: My favourite activity. I can't seem to get enough of it! But the couple hours of inactivity isn't great for those of us with arthritis and other pain disease: Morning stiffness is an extremely common symptom. But pain can also be a huge problem in the morning, as I have been personally experiencing: Lately I've needed a half hour just to get out of bed in the morning. Waking up and getting up are two completely different things. Waking up, you may experience anything, from pleasure of waking up to the sun shining, little pain and a day of relaxation  to a blaring alarm, lots of pain and a busy day ahead. Sometimes I wish the day starts when I say it can, having slept in enough to feel completely rested. But, that's not possible... Anyway, getting up is a process in and of itself. It's hard to try and move when you feel like you can't, and it's worse when you're in pain. Sometimes it seems like it would help the pain to just stay in pain, and I r...

Sometimes I'm not really sure if it is better to be a patient who is very knowledgable of their disease and similar diseases or if it's better to not know. It sounds odd but each end of the spectrum has it's pros and cons and I know each very well. Sometimes even a happy medium still has more problems than it's really worth, but you can't take back much knowledge. Being a bit of an expert of my disease has lots of pros. I actually know what my doctor is talking about and can catch onto a lot of things before he says it. For example, last time I saw him he checked a bunch of tender points on my back and chest asking if they hurt. When he finished, I said "Did you honestly   just check me for fibromyalgia?" "No- yeah, I did." And I'm aware of why he does certain things- for example, sending me for an EKG when my heart was beating too fast or why my kidney problems are such a concern. Knowing a lot about your disease also means you are aware o...

Dear Elizabeth, What are you doing?! You should be burning out any day now, and I'll make sure of that! Really? Volunteer work? I get it, it's good for others... But not so for me. Let's pay a little more attention to who controls if you have the stamina to, alright? School... I get it, you've got your priorities but I've got mine too. You can't neglect me so you can go to school . And now your doing Saturday classes... Really? You think you can handle that? Well, I'll make sure you've got your hands full between classes and me. Oh, and lets not forget those stupid art projects your always working on. I know your working on lots of things, especially for The Girl with Arthritis, but what about me?! Don't you ever sit down like I want you to? Elizabeth... I miss you. You're just so busy all the time... There just hasn't been enough time for me lately. You just don't pay attention to me anymore. I miss all the time we spent toge...

I've had this one thing on my chest for a long time. It's a bit of a touchy issue but right now seems like a good time to say it. It's hard to say it nicely so I'm just going to say it how I see it: I hate when people who don't have a drive to nurse become nurses. It honestly concerns me because I know so many people like that, one of them saying the other day '[Censored] this, I'm only in it for the money.' As a person who constantly receiving medical care, this is a bit horrifying. Many other people don't care about my thought. "We need more nurses." "It's a respectful job." "It's a steady job." And lots of other things will and have been said in protest to my thought. But most of these people don't realise what an affect it can have on the main goal: Patient care. I've been in and out of hospitals for years- both specifically for children and general hospitals for adults. I've met a whole var...

One of my favourite books is called 'The Fault in Our Stars.' I've read it about five times this year, and I couldn't help but fall in love with it again and again. This book is different from any other books I've ever read; not only did I understand it, it understood me. That might be a little odd so I'll post the bit on the back: "Despite tumor-shrinking medical miracle that has bought her a few years, Hazel has never been anything but terminal, her final chapter inscribed upon diagnosis. But when a gorgeous plot twist named Augustus Waters suddenly appears at Cancer Kid Support Group, Hazel's story is about to be completely rewritten." Other than "Fiction," it's hard to really describe this book. It's labeled 'young adult fiction,' but despite that being the target audience, it doesn't quite fit. It's a equal mix of teenagers and medicine- perhaps you could call it 'chronically ill young adult fiction....

Fatigue. It's a common side effect with just about any disease that is caused by your immune system. It can be constant and severe at times. It usually strikes when you really need energy. And the worst part is, lots of people won't believe you! It's- once again- one of those things people will think your using as an excuse to get out doing things. Again. There are lots of reasons we experience fatigue. From proteins in the blood to anaemia to simply being worn out from a flare, fatigue can come many ways. Lots of  people aren't able to fall asleep easily or simply don't reach a deep level of sleep, which can make fatigue even worse. So, what are we to do? There is no magic cure for fatigue- but if you happen to be a researcher, please take note! But anyways, there are some things take can help. Vitamin D and omega 3 are always good for you and can really help. Taking a quick nap when you need it is always a good idea. And eating heavy, rich foods at night may h...

We all have them. We all have ways of getting past them. Listening to this is one way I do. Instructions for a Bad Day By Shane Koyczan "There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape. Be diligent. Scrape the gray sky clean. Realize every dark cloud is a smoke screen meant to blind us from the truth, and the truth is whether we see them or not - the sun and moon are still there and always there is light. Be forthright. Despite your instinct to say "it's alright, I'm okay" - be honest. Say how you feel without fear or guilt, without remorse or complexity. Be lucid in your explanation, be sterling in your oppose. If you think for one second no one knows what you've been...

For children and teenagers with arthritis, there is one thing we hear very often. "You'll grow out of your arthritis." And no, it's not [usually] paediatric rheumatologists who tell kids this. It's other adults. It's the grandparents, aunts, uncles, cousins, neighbours, teachers, and sometimes even parents and other doctors. They don't know better and believe it is true, and may give them comfort to believe. They've heard it before: You can't possibly come up with that idea yourself. So who was that person who spread the idea? Lot's of people, actually. It is said that about seventy five per cent of children with arthritis in four or fewer joints will 'outgrow' arthritis without the need of drugs. It is extremely common for children to only have four or fewer joints affected, so it's very probable that the story of someone's child outgrowing arthritis would spread. Another problem is that many people don't understa...

I think one of the hardest things about chronic pain to deal with is the frustration. Frustration and anger are the results of many things. "Why isn't the treatment working?" "Why can't they understand?"  "Why does the world have to go at such a fast pace?" "Why can't everything go back to the way it was before?" "Why did this happen to me?" I wish with all my heart that I had all the answers, but I don't. I'm sorry. I really am, because I know having the answers could help a lot. It's very common to get frustrated or even angry about these things. It's hard to always look towards the positives when negatives are thrown in your way all the time. It's okay. It's okay to feel upset because the pain is everywhere or because you're tired all the time. You're body isn't feeling well and your brain is aware. It's so aware that it makes you worried about if something is wrong, and sad whe...

Recently one YouTube, a very well known Youtuber did a video talking about what he is most afraid of. He said that since he is an atheist, death is the scariest thing for him. Imagining nothingness for eternity scares him a lot. Many people agreed, saying that death is their fear because of it. How I see it, they probably don't actually fear death itself, they fear nothingness. Every fear we have tends to be for a bigger reason, and some of them come for bigger reasons. For example, I don't like the dark. It's not that I fear the darkness itself, it's that I fear there is danger I can't see. But that's not my 'biggest fear.' I suppose you could say fear is pain. It sounds funny from a person who's had arthritis since before they could remember but it's true. I am actually afraid of actual pain, but there is more to it. I'm afraid of what's happening to cause the pain. I'm afraid something is wrong. I'm horribly afraid of suffe...