Tuesday, 30 April 2013

Tips for a Stressed, Painful Jaw

When I was younger, I had dental braces. And I was adorable. Little Brace-Face Elizabeth, walking around smiling with a mouth full of metal. I used to get pink and purple bands on them. It was precious. Well, except when they were tightened and I was in a lot of pain. That wasn't really fun for anyone. Anyway, I got them taken off quite a number of years ago and I now have straight teeth.

Now that I have the perfect teeth, can I please have a perfect jaw? Preferably a less painful jaw. Lately, I've been under a terrible about of stress and that results in clenching my jaw. Clenching my teeth makes my jaw extremely painful. So I've had to be creative in finding ways to relieve this pain, and I would like to pass this knowledge onto you. If you have jaw pain, or even just clench your teeth a lot from stress, you might find these tips helpful.

1. Drink something cold. No, the cold won't numb the pain. However you have to open your mouth to drink, and it will help put less pressure on your jaw. And why the cold drink? I don't know why, but it helps.

2. Drink something hot. Again, the drinking motions will help. The hot tea or whatever you choose might help to loosen tense muscles (it's worth a try, right?). Anyway, it may help you relax when under stress.

3. Bite on a pencil. Don't bite it in half! Just use it to seperate your jaw and help relax. This is also a way to relieve headache.

4. Put your head in your hands. Hold your forehead in your hands and try to relax your jaw. This is particularly good when your neck is sore too.

5. Walk away. If you know something particularly stressful is causing you to clench your jaw and ultimately cause pain, try to walk away. Try relaxing as best as you can. Even if it doesn't help the jaw pain, it's good to give yourself a break from stress.

I really hope these might help you, since they have really helped me!

Sunday, 28 April 2013

I'm Sorry

It is glaringly obvious I have not been writing regularly. Lately there is a day or two between posts. Honestly, I did this at first because I began to worry posts everyday are annoying. Now, it's because I haven't much time to write. And I am sorry for that. Believe me when I say I very much enjoy writing and it hurts to be away so much (even more than Arthur).

I'm not going to sit here and write excuses for you. That's rather boring. But I am going to be very busy for about two or three more weeks. Please excuse me in advance if I don't get to write much or if my posts don't appear like my normal ones. It's an extremely stressful time right now, but fortunately it will get better. It just takes time. Hopefully Arthur will cooperate to help.

So I leave you here for right now. This isn't an excuse post for me to forget you for two weeks. It's an apology post in advance for having too little time and too much stress. Please bare with me: I'm trying.

Hugs and Spoons,
Elizabeth

Friday, 26 April 2013

Medicine is like Shoes

Yesterday I was talking with a friend who was trying Methotrexate for the first time. She told me how tired it made her feel and how it hurt. We both agreed that it would probably take a while for her to adjust to it. That's when I said, "The thing about medicines is that they are like shoes: they're painful to wear until you break them in."

It's true in some cases. Sometimes a medicine will cause very ongoing side effects. Other times, they'll gradually (or even rapidly) lessen or even disappear. I went through about three weeks of horrid side effects with Enbrel before they began to go away. Like a good pair of shoes, Enbrel hurt for a minute but then became very comfortable and worked for my benefit. And in my life, I've tried too many 'ill fitting shoes.'

And, like shoes, medicines are necessary. Sure, we could definitely walk around without shoes but it would be rather painful on sharp rocks or slippery on some floors. Many shops and places will not let you go in if you do not have shoes. Maybe we don't need them for survival, but shoes are definitely a great tool we have that enhance life quite a lot. Just like medicines- or braces, wheelchairs or any other equipment for that matter-they help many of us live life as full as we can. We could stay home all the time- it is possible- but if opportunity awaits, why let it pass?

Wednesday, 24 April 2013

It's No Big Deal

Recently whilst on YouTube, I came across several videos that are supposed to help children cope with going into hospital and getting tests. They are usually live action and consist of the three phrases 'It's no big deal,' 'it might hurt a little,' and 'great job!' These aren't new to me because when I was younger, I would watch them if I needed a test or something. Actually, I still watch them now if I need a test I'm not firmiliar with.

Anyhow, one film refered to all the children who got a needle as 'super patients.' So since I give myself shots twice a week, am I an 'extra super patient?' Joking aside, it was nice to see how nurses helped children find coping techniques when they were getting needles and such. I like how holding the child down whilst they cry and try to kick is no longer the only thing we can do for the nervous child- or adult.

I've seen videos of kids having Methotrexate or Enbrel injected by their parents or even themselves as well as adults. I've also seen other people with chronic illnesses get MRIs and such. They tended to be calm and may have their own coping techniques. Eventually, habits and routine help us deal with 'big deals.' Whilst it might not make it less painful, it helps to make it easier. Maybe bringing pyjamas from home makes an MRI easier. Perhaps watching television whilst taking Humira helps. It's good for eveyone to avoid stress if we can. If we all could be more comfortable with medicine, maybe it could mean more healthy people in the world. Well, maybe not in my case but it would make hospitals seem less like prisons for a lot.

Sunday, 21 April 2013

5 Reasons Art is the Best Medicine

It's been said that the best medicine is laughter. And I agree, however I would like to change that statement a bit. "The best medicine is laughter... and art!"

Maybe I'm biased because I'm the artistic type, but I one hundred per cent believe art is one of the best medicines. I think people can find a lot of benefit in art, for a variety of different reasons and a variety of ways. Making art, looking at art, listening to music, making music and all sorts of art forms can really help people feel better. And so, this is my list of reasons why art is one of the best medicines:

1. It Relaxes. Many people find it easier to wind down and relax whilst drawing, painting, listening to music, looking at books of paintings or photography or doing craft projects of some kind. When your mind is at peace, it can help your body be at peace as well.

2. It's a Form of Expression. The great thing about art is that there are no wrongs. If you're able to, using art is a great way to express what you're feeling or going through. Drawing, painting, music, video documentary, photography, sculpture, and writing are just a few things but the possibilities are endless. The sky is the limit when it comes to art, but just remember- we've made it to the moon.

3. It's a Distraction. On painful days, having art is a great escape for me. I'm almost able to find a way to curl up and still be able to draw, look at books or something great like that.  I know I can't be alone with that since one of the reasons children's hospitals tend to have colours and pictures everywhere isn't just to make everything more 'child friendly,' but to try and take the little girls and boys minds off of being sick or in pain. It works surprisingly well with big girls are boys too.

4. It's a Way to Relieve Stress. Of course, art doesn't have to be calm. It can be very violent at times as well. Usually the times when Elizabeth is very frustrated with being in pain and doesn't know how else to take out her anger. I've smeared paint over canvases, ground pencils until there was nothing left, smashed chalk everywhere and have drawn very ugly pictures of how I felt. I get so angry that I can't see any beauty, anything great at all and I want to show the world that. And after I'm done, I feel better.

5. It's Fun. There isn't much fun in being sick, is there? The things we find enjoyment in tend to make us feel a little better. So, if you enjoy doing scrap books and are able to, why not? I'd rather be doing something I like whilst I'm in pain than being bored and in pain.

So, that's my list. And I leave you here, with a quick watercolour work that helped me calm down on a particularly painful day.

A quick watercolour painting that helped me on a painful day.

Tuesday, 16 April 2013

Draw My Life

A recent trend around YouTube has been to do something called "Draw My Life," which is when people draw... Well, their life. The drawings are usually little stick figures and such, which is great because it helps you focus a little bit more on the story. Whilst people draw, they tell you their story. What amazes me is that people are very Open with their stories and you find most people have had more challenges than what you'd imagine. I love watching "Draw My Life" videos because I like learning more about other people and finding that we often have the same experiences that we wouldn't know otherwise.

Whilst I think it would be cool to do a Draw My Life video too, I have already done this in my blog. So, I drew a quick sketch of my life right now: A coffee, some art, one blog and lots of great people I've met through it. :)


Just a quick sketch.




Sunday, 14 April 2013

A Lonely Disease

It's odd how in a world of billions of people, one can feel so lonely.

This is particularly odd for me. I go to school. I meet up with people in the city. This blog keeps me contected with lots of great people. And Since I have access to the Internet in general, I can talk with virtually anyone, anytime I'd like without having to leave my spot on the couch! So where is this loneliness coming from?

 I guess it's just from feeling so distant from everyone, especially my friends. As many a person before me has said it, I declare "They don't 'get' me." The arthritis doesn't help at all. I want to scream  in frustration that they don't know and they don't care. And I know others have felt the same: if there is one most misunderstood thing in this world, it's pain. And if there is one thing that can bring those in pain together, it's the feelings of being alone and misunderstood.

I don't really know how to conclude this post. I could write about when people tell me that my pain is no big deal or in my head. I could tell you the stories of being forgotten about on various occasions. I'm even tempted to write about the times that people have touched my back when I specifically asked them not to because its painful. But I think we all have our own stories to tell. But more importantly, we have our reasons to unite.

Friday, 12 April 2013

Illustrating Pain

It's a fact that I go to school for art. I was always artistic from a young age, but once I started school I got to experiment with more mediums than I had before. One of the greatest mediums is the computer. When I first started, to practice on the computer we did 'Scan Drawings.' That's when you drew something and then put it on the computer to design. One of my first scan drawings was one done to try and express what kind of pain I felt at that moment. That was my first offical "Illustrate Our Pain." And it looks like this:
 
 
 
 
It sure isn't pretty, the bone showing isn't pleasent either. But it was how I felt that day.
 
I've created a new page for Illustrate Our Pain. Now, if anyone wants to submit any work for the page through email, I'll display it with among the work of others. All are welcome!
 

 


 

Wednesday, 10 April 2013

"What Does Arthritis Feel Like?"

"What does arthritis feel like?"

This question was asked to me by a good friend of mine. My immediate responce: "It hurts."

My friend had been getting a lot of knee pain recently and was curious if it was the beginning of arthritis. But then she asked me what the pain was like specifically. I couldn't answer. The brutal nature of that question made me realise I couldn't tell her what the pain was like. Even when I did find the right words, I cannot convey true feeling.

I think our true relation of pain ended at "sometimes it's very achy." I don't think she understood when I said "it can feel like tearing, pressure, stabbing, and even like I just had all my joints pulled apart." Actually, she looked at me in horror. At least she understood that that's how I feel; I've known people who rolled their eyes as they saw me limp by. 

Everybody has different pain- they feel it uniquely and at varying degrees. No two people can answer "What does arthritis feel like?" in the same way. I mean, I didn't even touch upon the stiffness, fatigue or any other of that fun stuff! And it's not fair that we have a hard time helping people relate: sometimes, it seems just too difficult to explain or to show others it's true severity. There's so much in this disease that we can't really answer "what's it like," especially not in a crowded corridor with barely any time to explain. In a lot of ways, saying "it hurts" is an understatement. But honestly, what isn't painful in this disease? 

Sunday, 7 April 2013

Medical Communication

I think there is a lot of communication in the world. Cellphones have made it so an individual can be reached in a moments notice. The Internet has made it easier than ever to be connected with others from countries half way across the world from you. We even have more travel opportunities than ever before.

However, as much as we would like to say people communicate more wisely today, we really can't. Our communication can only go so far. In the medical world, communication is a very complicated thing. It can go several ways and is different for every person.

 A patient may be in extreme pain and can express that pain, but for whatever reason that pain may not be  received by a nurse or doctor. A doctor can recommend a treatment, but a patient can reject it without hearing the explanation of why it's needed, the consequences of not having it, and the benefits. A doctor or nurse may not communicate with a patient or quickly dismiss them. And there are many other examples of things that happen every single day for whatever reason.

I think we often forget that in order to be treated, it takes two parties of the same variety: People. A person who needs help and people who can help need to communicate openly. There is usually two sides to every story, but regardless it is imminent that the two are able to connect. I understand a person in medicine may not want to get too emotionally close to a patient, and I also understand a person who needs help may not be comfortable. But unfortunately, medicine is intimate. People helping people, people depending on people.

Friday, 5 April 2013

Back Braces and Flat Feet

I've never had braces or splints before. But there's always a first time for everything.

To put it bluntly I may need a back brace. My spine is somewhat curving due to the arthritis, so a back brace may help. I won't know if this is the case for about three months. It's taking so long because we're going to try correcting this problem from the start- of me, anyway. I'll be trying orthopaedic arches in my shoes for a while, to see if that's what is causing the curving as well as some of the pain I experience. Due to being flat footed as well as having knock knees, I may be in more pain than Arthur is actually giving me.

However, if that doesn't help my back I will be getting a back brace. It isn't actually a traditional brace, it's more of a wrap around my tummy. The doctor told me its mostly for when I need stability when lifting heavy things (or in general) and for when I'm in pain. It doesn't sound too bad: since it's a wrap I'll be looking extra fit :) . 

Wednesday, 3 April 2013

Caring for the Individual

It's not uncommon to hear others say 'I want to help people,' but that always made me wonder when the individual is cared for. Does it only matter when a whole population of people are hurt by an event or had their lives dramatically changed- not an individual? When do we rebuild not just the people, but the person? Why doesn't it matter when a person is hurt by an event or had their lives flipped upside down? Because it doesn't affect everyone?

No. Because it happens every single day. Maybe at one time these things did affect everyone but presently since it happens so often, we're used to it. We've been built up to so much than one casualty is no longer a big deal: It cannot penetrate our shield. People go on and live their lives with the strength we've built to move on. Meanwhile, an individual is trying to pick up the pieces and wearing a mask that protects everyone from their emotions and stories as if censoring their lives.

But of course, the word 'everyone' is general. It really doesn't matter to a person who doesn't know you and will never encounter you if you've had your life flipped. It should matter to the people who we are close to. And what's worse than having your life flipped, is having it shattered more by a loved one who doesn't care.

When I was diagnosed with arthritis, my life fell apart. I spent a very long time putting the broken pieces back together. Even though it's not perfectly put together- I love it as it's my own. And yet, Every time I hear "It's just arthritis- it's not a big deal," it crumbles just a tiny bit.

Of course it's not a big deal.
For them.

Tuesday, 2 April 2013

Arthritis Battle Scars

Autoimmune arthritis, lupus and other diseases are very invisible diseases. However, they do leave their marks. Paleness. Weakness. Hair loss from medicines. Braces. Crutches. Canes. Orthopaedic shoes. All sorts of battle scars.

A term I've always had a love hate relationship is the word deformity. When used correctly, it's a dramatic word that can bring a persons attention. But it can be used in a hurtful way- usually by ones tone of voice. Regardless, it's a completely correct fact when I say that I have a deformity.

I have very inverted thigh bones. While knock knees are not typically a problem in a healthy person, they can be a huge problem in people with arthritis because it means you move in a way that accommodates pain and inverted knees. Thus, my knees are really bad because I had hip arthritis when I was little. And they're quite a sight: always puffy from the fluid in my knee and touching each other. I've got long legs, so my knocking knees are more apparent. You can even tell they knock through my jeans. In fact, I can get my knees to go 180 degrees around- actually more.

Of course, I'm very lucky I only had two joints affected. I can only imagine what others who have had many joints affected go through.

Anyway, I'm proud of my knocking knees; My inverted bones. They're my battle scars. I'm proud of 'little' me not crying or complaining. I'm proud that I've made it to this point with only two joints that are different. It's nothing to be ashamed of. Willows bend and twist, and are yet so beautiful. Why should humans be different?

Monday, 1 April 2013

Cold Joints

I am cold all the time. I get shivers down my spine all the time that give me muscle spams that are bad enough to get noticed. Which makes people stare, of course. 

I know very many people with autoimmune diseases that struggle with the cold. I am one of those people. Its not just that you're a bit chilly, its that the cold is actually painful. One time, despite being on holiday in a very hot and tropical area, I still wanted my jumper because it wasn't quite hot enough. My mum wouldn't let me have it: she told me I'd overheat. She was probably right. And, despite knowing its horrible for your skin, I bathe in hot water ONLY. Cold water is painful.

I don't really know why it seems people with autoimmune arthritis and related diseases seem to be affected by cold more. There doesn't seem to be much research out there about why feeling freezing is so common (if you come across any, let me know!). I think two of the best things you can do for a person with Arthritis, lupus or anything like that, Is to offer an extra jumper or blanket when it's cold and to never force them into a swimming pool.