Friday, 29 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 view of the track isn't obscured however you're probably moving way too fast to even know what's going on at all. Though is a smooth course, it contains steep hills, bends, twists and loops that can really change your point of view.
  • The Children's Coaster: Probably the track everyone would most like to be on. Designed for the little ones, this track is predictable and gentle. Maybe a few small hills and a turn here and there, but nothing you can't handle. Of course, this can change rather fast into any other coaster. 
  • 'Space Mountain' Coaster: named in honour of the infamous Disney attractions, this coaster takes place in the dark. Nothing is predictable here. Full of sudden jerks, turns and hills, you never know what you'll get hit with. Anyone will agree this is the worst track. I've found myself on this track many times. I hope you never will be on it.
There are many other tracks, but I feel I've covered the basic ones. Whatever track you are on now, I wish it an easy ride for you. And remember, it doesn't have to be scary : It can be enjoyable. It just depends on what you make of it.


Wednesday, 27 November 2013

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 wanted to put you through my disease. I never wanted for you to feel the pain, to experience the fear and to shed tears of the two combined. I wanted for you to be happy and free as a bird. It makes me happy to see you happy. I am so sorry.

To My Dear,

Thank you. For never leaving me alone. I've needed you: You've brought me through lots. And though there have been many bad times, there have been many good times. I love the laughter and joy we have together. I can never thank you enough, my dear.

Love,
Elizabeth

Monday, 25 November 2013

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 for someone who is complaining about a pimple on the arm!

I know sometimes people do things to get attention. I don't know why they want the attention, but I can sympathize that no one likes to be forgotten. But I am not forgiving about one person being so concerned about themselves that it makes another person who needs help forgotten. Take it from the person who couldn't get up from her chair because everyone else was very concerned about , you guessed it, a small pimple on the arm. Of course, this isn't about me: I usually can get by without needing help. This is about everyone else who needed help desperately but didnt get it, because someone who didnt need it took it.

Friday, 22 November 2013

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." "Yes, and this is just me resisting the urge to smack you... You know, if my hands didn't hurt from my just arthritis."

10. Cherry juice, honey, ginger, and green tea. If you know what I'm talking about, feel free to add more in the comments.

9. Brain fog. Especially the kind before presenting a report. To a huge class. Specifically the class with the cute boy.

8. When you've used the hottest water possible for your bath but the water is cold within five minutes anyway.

7. When the lovely outfit you picked out only looks good with the painful shoes.

6. Heat pack burns.

5. When an ice pack on a swollen, hot joint sounds so good, but handling the cold makes your hands hurt more.

4. Pain Medicine: "Symptoms may include joint pain..."

3. "Can't you just use that rub on stuff?"

2. When a nurse weighs you and it's two or three pounds heavier than when you weighed yourself. She's obviously jealous of this sexy beast- er, young lady.

1. When you struggle to open up a brand new jar, wasting precious spoons just to find out there was an already opened jar.

What annoys you most?


Tuesday, 19 November 2013

Bullied

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 bullying against me personally in almost four years. There are a lot of reasons behind the end of it, but the big thing is that it ended. My one regret is not speaking up. Maybe if I spoke up, it would've ended much faster, but what's done it done. If you are the victim of bullying, please speak up. It takes a lot of courage to speak up. I remember being too afraid in case they said I was just too sensitive or that I was actually the bully. I was scared that people would hate me for speaking up and that the bullying wouldn't get better or would get worse. But speaking up could be the best thing for you and other potential victims. You're not alone in this. I've been through it- and my email is right there for you in case you need someone to talk to. Don't be shy, I don't bite. :)

At the moment I work with a local organisation for younger teenagers who have problems with bullying and are having a hard time making friends. I love working with the group so much- I love seeing them as they make new friends and are able to stand up to bullying. I love knowing I've been able to help some stay safe. That's what I've been doing to make a stand to bullying- what are you doing?


Saturday, 16 November 2013

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 agony and there will be a dying patient who is in a lot of pain who doesn't really complain. But you cannot brush off a serious illness as 'just' this or 'just' that. That is completely unacceptable because it's not just arthritis (autoimmune or otherwise), it's not just asthma, and it's not just an allergy as much as it's not just a severe flare, or just an asthma attack or just anaphylactic shock.

I'm sorry. I bet I sound horrible to people on the outside, but it really hurts to be the person who is asking for help, only to be dismissed because it's just this or just that. We have to stick up for ourselves- not only as patients but as living, breathing people who just want some help. You shouldn't be treated like you're making a big deal of nothing: Of course it's a big deal! It's your body! That thing you walk around in? Yes, that's your own skin and you deserve to be cared for by a person who is supposed to care!

I really wanted to tell my friend a lot. I wanted to tell her that it was just my arthritis that just keeps me from working like everyone else and just gives me chronic pain. That it just caused kidney inflammation. I wanted to tell her that I just took immunosuppressants  to care just for my arthritis, and it  caused just hair loss, just nausea, just extreme weight loss, just colds that turned into more, just the feeling of having no blood in your head, just fatigue and social isolation resulting from such, and just a lot of other things she just can't understand because she's never been through it.

But I didn't say any of that. I don't know if I'm glad for not snapping on her or if I'm upset for not sticking up for myself again. Regardless of what I did, I'm asking you to never take that from anyone. Don't let them dismiss you, especially if you need help. Sometimes they simply don't understand and you need to help them along. Don't be rude- rudeness never gets us anywhere- but make your point understood when you can help it. Choose your battles wisely.

And remember, for every one nurse who doesn't understand, there are lots of others who try and care.


Tuesday, 12 November 2013

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't move. To keep your eye open, put one or two finger on the middle of your top lid and pull it open, more so at an angle than straight up. It will be harder for your reflexes to close your eye if the lid is held up at an angle.       
  • If they're shining a light in your eye, or anything else that makes you want to close your eye, focus on your other eye. It really makes it easier since you are no longer paying as much attention to the eye being examined.
  • If you're anxious, tell the nurse and doctor. They may understand: people are often very nervous for eye appointments. They may do things more slowly, explain everything they'll do before and as they're doing it, and they might have tricks to help you along.
  • Take deep breaths. It might help you loosen up.
  • If you just can't stay still, do what I do: Hold yourself down. Push yourself into the chair if you have to. You're probably moving just because your body is uncomfortable and is reacting how it would in nature. Sometimes you really can't help it, and that's okay.
  • Bring dark glasses- you don't want to wear the ones they give you, trust me.
  • Take someone with you. It could help to have someone you trust with you during the exam, but if your eyes are dilated its a good idea to have someone with you to drive or help you read.
  • Bring an iPod or something like that with you. Whilst you wait for the dilation to take effect, you might be bored and the drops will make it harder for you to read and tolerate light. Listening to music will be much better than irritating your dialated eyes with books or iPhone games.
  • Try to act like it's not a big deal: Have conversations, make jokes and laugh. The less scary nod uncomfortable you pretend it is, the less scary it will seem.
Oh course, I thing the most important thing is that it's fine to be nervous or scared. Our eyes are very vulnerable and most people are very sensitive to that area being touched. It's natural that we don't want others being near our eyes or getting light or drops in them. It's very intimidating. It's okay to be scared, but it's important to go anyway. Being uncomfortable for a bit is much better than dealing with the consequences of undetected eye problems.

Sunday, 10 November 2013

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 level."
I didn't know what it meant, but it terrified me. I was scared to death! I felt sick all the time and was sad to think that I would live like that forever because going 'to the next level' was much worse.

That was a few years ago. I still have no idea what 'the next level' is.

I changed rheumatologists because I needed new options. I didn't know what new options I would be presented with, if there were any at all, but we had to try. My current rheumatologist has given me lots of options and treatments to try- DMARDs, biologics, different NSAIDs and even going medicine free for a few weeks. I've been taking Enbrel for a year, twice a week. Even though I'm not anywhere near remission and still have my bad days, it's helped me an awful lot.

What still is shocking to me is that a doctor convinced me that I had no options but to suffer through something when there are more options out there. I know I'm not the only one because I've heard many stories of that, including from friends of mine.

You have the right to more options. There is usually at least one alternative or a way to make your current option better. You can take folic acid or even zofran to help methotrexate side effects. You can add Enbrel to methotrexate. You can try gluten free diets. We have so much power in our healthcare that we forget we have! Sometimes hospitals and doctors are so intimidating we forget that  they are on your team. Or, at least it's supposed to be like that. You as a patient have the right to refuse and rights to a second opinion. You have the right to listen or ignore. Choose your actions wisely, but trust your gut. It's your life.



Thursday, 7 November 2013

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 wanted to ask.

That's just one example of a chronic illness going unexplained: A little girl was made to feel stupid for not knowing more about it. There are lots of reasons a chronic illness goes unexplained but this should never be the case. Sometimes we don't even know enough about it, despite having it ourself. Are we too afraid to ask and for what reason? Feeling dumb shouldn't keep you from asking about your diagnosis, regardless of how long you've been treating it. I know I don't understand everything about having psoriatic arthritis but I don't stop asking questions. It took me a long time to learn that not many people will put you down for asking a question.

Because of my experience, I try and be very kind when asnwering questions about chronic illness- just because it seems obvious to me doesn't mean everyone knows. Esepcially someone who isn't affected by it. When someone asks you a question- so long as you are comfortable of answering- please take the time to reply. You never know what an impact you could make. And if you're not comfortable, just explain that too.

Everyone has a right to learn without humiliation, whether it's you or anyone else.

Monday, 4 November 2013

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 extra fluff here and there, discolouration and lots of other things. No two bodies will ever be the same, not even those of identical twins.

Those imperfections however, are just the opposite: They're perfect. From an artists point of view, it would be so boring to draw a perfectly proportioned person, with perfect skin and perfect features all the time. Our differences are interesting. They give a body character and a story. It's only with these personal details that we can see beauty in the body and that we can celebrate it.

Be proud of your body. Love it. Love your features and celebrate them. You're beautiful, whether you realise it or not.

Friday, 1 November 2013

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 few weeks more, so please forgive the lack of blog posts. Right now I'm trying for two a week but it might not happen. When this is all over with, I'm probably going to be in a tired, painful state whilst I recover. I'm not going to regret it though, because I know I'll recover from the pain but I will never forgive myself for not working hard right now.

Stress? It make arthritis worse. The best thing to do is control. Don't do as I do: please control your stress. And if you find a miracle way to take away stress, please let me know! However, I have found a few things that tend to help a lot:

  1. Always take time for you. I give myself an hour in the evenings. I like to take log hot showers to relax myself, and then kind of zone out whilst watching television. The nights I don't do that I feel worse the next day.
  2. Learn what stresses you. Even when it's one thing stressing you out, it may feel like everything is a source of stress. Although it won't take the stres away, you can feel more incontrol being able to separate stress from other things.
  3. Don't put more stress on you than you need. Don't sign yourself up for extra projects, accept help if you need it and just put away the uncomfortable othes and shoes- you can look dressed up and uncomfortable when you're not under more strain!
  4. Never neglect your treatments. I don't advise you to push yourself but if you do, it's more important than ever to follow through with medicines and treatments. Without them thugs could be much worse.
  5. Don't neglect the people around you. Let them know your under stress and are having a rough time. You shouldn't have to lose your relationships. I learned this the hard way.
It gets better eventually, just keep holding on.