Showing posts from November, 2013

Roller Coaster Lifestyle

When I first began treatment for juvenile arthritis, I was put on a roller coaster: Mentally, emotionally and physically. I would say the first two years were the most wild, but there have been plenty of loops, hills and spirals along the way. Chronic illnesses tend to put people on roller coaster journeys. Nothing is set in stone, which means whilst things could go wrong, things could also go well. We're all at different parts of the ride, of which is completely different for everyone. But I think there are about four types of coasters we've all been on at some time. The Wooden Coaster: The wooden coaster is generally predictably since you can see the front of the track. The thing about it is that it's not a smooth ride: Wooden tracks are rickety and although you know where you're going, it can feel like it can change at any moment. This track can instantly turn into one of the following. The Steel Coaster: Typically very fast and unpredictable. Sure, you're

To My Dearest

This post, although seeming to be exclusive to a romantic partner, is meant for the people in life who make everything much better. It is meant for all the parents, partners, friends and children who are active in the lives of their chronically ill loved ones.  To My Dearest, I am sorry. I never meant to hurt you, but yet I watch everyday as you suffer. Sometimes it's easy to forget that chronic pain hurts more than one person, but I am able to see it hurt you often. I never wanted that for you- I can deal with my disease, but I don't want you to suffer it. And yet you do for me. I'm so sorry. My Dear, I am  sorry. As happy as you seem to help, I can see the sadness in your eyes. I never meant to need help to do basic things, and I never meant to make you help me. It just happened. I can see that it upsets you to see me like this, and it upsets me to see you putting on the brave mask that hides the sad in you. I'm so sorry. My Dear, I am sorry. I never want

Paper Cut Amputations

We all know that one person who can make anything sound a hundred times worse than it actually is. Unfortunately, I am constantly followed by one. A pimple on the arm? Yeah, that's a horrible painful rash that is simply incurable. A paper cut? Might need to be amputated. A very light bruise? "There's lots of blood flow there so it's like daggers and knives." Fell on the schoolyard as a child? "My knees are still torn! I have the scars! There's probably still pavement in there!" Listen, I've seen those knees: if there are scars, obviously I am blind.  You know, maybe I've just been sick long enough or injured enough times to see past the exaggerations. But really annoys me is everyone else gives into this person!! The sympathy is really... Pathetic. Yes, this is a jealousy story. But it isn't over someone else getting attention- that's the last thing I like. It's that people can care less over a person in twenty four hour pain

17 Things That Annoy Arthur and I

A List of 17 things that annoy us, in no particular order.There are many more than this, but I had to cut it down. By about seven hundred. 17. People who chew obnoxiously. Besides for the terrible annoyance, there's a bit of jealously in regards to my jaw: if I chewed like that, either Arthur or my mother would smack some sense into me. Not literally. Well, maybe Arthur. 16. When the bus driver doesn't pull up to the pavement close enough so you have to step down to the road then up. 15. Every pain reliever ad. They don't know what they're talking about. 14. When you're watching a medical drama on television and they get everything wrong. 13. When you make plans and it's seemed like a good idea... until you actually have to get up and get dressed. 12. When you have to explain to the doctor exactly what your disease is. "You're the doctor, shouldn't you be telling me?" 11. When someone says "It's just arthritis." &qu


Depending on where you live, it may or may not be bullying awareness week. Regardless of where you live, every week should be bullying awareness week. It's a huge issue that no longer is an issue within only schools but even in home with the increasing use of social media. Bullying within the work place is also becoming a huge issue too. Bully is an extremely common thing to be a victim of and/or witness. I know I have. When I was younger, I wasn't bullied horribly by other children. I had lots of times where I was miserable, but it could've been much worse. I do recall, however, being bullied by teachers an awful lot. I was a very quiet and sometimes sensitive child- I cried one time whilst reading a book about kittens. Alright, I was a really sensitive child. But it's not an excuse for a child to be afraid to speak because she liked the silence more than her ears being filled with insults from the mouths of her peers and instructors. I haven't dealt with bull

When Nurses Say It's 'Just' Arthritis

A few weeks ago I was talking with a student nurse. Our conversation somewhat ended coldly, but not the way you would expect. You see, this person happened to say, "I mean, it's just arthritis." I kind of smirked, gave a small laugh and said "You're lucky you said that to me and not a patient: I know what you meant, but a patient would think you just completely dismissed their pain." As I gave her the heads up, she proceeded to obviously lose attention and began to text and laugh at a message, not acknowledging I had spoken at all. I get it. Nursing is an extremely difficult career. Believe when I say I understand- not completely, of course, since I'm not a nurse- but I see a lot of things they put up with and lots of great things they do enough to see the passion behind it. I'm in hospitals enough to be reminded of this constantly. And I understand that there will be one patient with a slight fever who insists they are extremely ill and in agon

Getting Through Eye Exams

I have the worst time at the eye doctors. All things about the eyes just creep me out- I can barely think about contact lenses. Unfortunately, autoimmune arthritis has a tendency to affect the eyes, especially in children. Lots of us have to do full eye exams at least once a year, if not twice or possibly more. Yay. I've had a heck of a time through the years with my eye exams. I used to have to go twice a year but after switching to a new eye doctor last year, it was determined I could go once a year. But no matter how often I go, I never get used to it. Eye drops? Those are a struggle. Want me to look into the light? Yeah, we'll see about that. And don't even talk to me about glaucoma tests. I may not like them at all, but I do have ways of getting through them. If you can't seem to keep your eye open for drops, there is a way that could make it easier. Tilt your head back onto the head of the chair, that way you can push your head into the chair and you won'

The 'Next Level' Medicine

In autoimmune arthritis, there are tons of treatments you can try- from DMARDs to diets. Okay, there aren't tons,  but there are several treatments out there. You might be lucky and find that your first pick gives amazing results. But, more often than not you'll try a few. I did, and it took a few years to find what works best. To be honest, it should've happened earlier. My first rheumatologist liked to stay with one treatment, regardless of what happend. I remember one DMARD made me extremely ill for the month I took it, and I later learned that they were extremely serious side effects. Towards the end of my two years with my first rheumatologist, I wasn't feeling well at all with Methotrexate and we weren't seeing any improvements. That's when I asked my doctor "Isn't there anything else we can try?" He sighed and I remember his exact words: "We would be going to the next level after Methotrexate, and you don't want to get to that

Chronic Questioning

When I was little, there were a few children in my class who had allergies to peanuts. Obviously, at the age of nine I didn't know much about allergies since they never really affected me. We were informed that we needed to wash our hands after eating things with peanuts in them, and then the teacher allowed us to ask questions about the allergies. One of the children asked about if chocolates are okay, and one of the children with allergies said that it was okay only if they weren't made in the same place as peanuts were. That made me think about my favourite chocolate things so I asked, "Are chocolate biscuits okay?" And one of the children smiled and said, "yes, I love those." "It's not a chocolate  allergy, of course chocolate biscuits are acceptable," My teacher barked at me. Even though I still had more questions, I didn't ask anymore. I didn't like feeling dumb so I just sat quietly and hoped someone else asked the questions I

My Nude Figure Lesson

Someone once told me the best way to get better at drawing is to draw the body. I still agree it's probably the best way to become better at drawing. Most artists who went to school to study art- and even some who didn't- have taken at least one figure drawing class. A nude figure drawing class, specifically. I have takens loads of those and it made me a better artist. It also made me grossed out of old men for a whilst, but that's a different story. Anyway, the class taught me more than just drawing skills though. It showed me how different we all are. When we're little, we talk about how girls and boys are different. On blogs like this, We talk about people with disabilities and those without them having different bodies. But it seems like sometimes we forget that everyone is so different, and absolutely no one is perfect. We all have those imperfections we really hate about ourselves, and I've seen on other people: large surgical scars, wiry frames, a little e

Dreaming Stress

Stress is a huge part of what makes autoimmune diseases flare. I love how everytime I read something on controlling autoimmune arthritis, it tends to say something along the lines of 'learn to control stress.' I feel as if that should be more of an instruction for bosses, teachers, and anyone else who seems to cause more stress in our lives. It might be up to us how we deal with it, but I can only do so much. We always say our health should come before anything else, and though it should, it won't always. At least for me. Maybe I'm burning myself out, but I've been pushing past a lot of pain and fatigue to get work and projects done. I'm a young person: I'm working to pursue my dreams. Maybe it's my age, but achieving dreams triumphs a lot right now. My rooms a mess, my Enbrel is off schedule by a day (not a big deal: I don't let that become a problem), I'm tired beyond belief and sore. Right now, so much is taking my priority. It will for a fe