The Girl With Arthritis

There are a lot of reasons one can feel like a stranger at family gatherings. I think the most common reason is because families tend to be strangers to each other. Some families drift over time or after the death of a grandparent. Others are just distant. I can't speak for everyone of course. Being strangers isn't what hurts you though: It's when they don't know you. It's a stab in the back when the people who held you as a baby cannot remember that you're just a bit too old for a necklace sized for a five year old child. By more than a decade. There's this one person I never connected with. I suppose it's because we are seemingly polar opposites, but I think it's a downright shame I've never had a proper conversation with him. You see, our relation implies we are very close but our actual relationship implies otherwise. We barely acknowledge each other at all. I've always assumed he never thought of me at all, which hurts considering ...

I hope everyone had a wonderful Christmas! I certainly did. I've had the pleasure of being surrounded by family for the past few days. Although sarcastic by nature, I don't mean it sarcastically: it was actually nice to see my family again. Mostly.    There was one event in particular that stands bright in my memory. It was towards the end of the night and only a few were left. My younger cousins were playing nicely when the inevitable happened- a crash and some crying. An object that wouldn't be heavy to an adult but very heavy to a very petite eight year old fell on said child's foot. Even though we're still questioning if it really "just fell" or "if he threw it at me," one thing I can't question is that the child was really hurting. What I thought was interesting was the reactions of three people. The first person had a wonderful time with the child, however it was quite miserable for the child. He really enjoyed jokingly telling ...

"How are you doing?" This is a question that doctors and nurses often ask. 'Same as normal'- my normal, not a healthy person's normal. It's just the life I got use to. It's this life where pain is constant, and that's accepted because we have no cure. When other people ask me this, sometimes I know they care. And that's great- I can't thank them enough and I'm very grateful to have them. I know that they want to hear good news, and sometimes I have it and I'm happy to share, but a lot of the time I don't. Unfortunately, it feels like they only want the good news, because otherwise everything is depressing. And I feel guilty that I can't give them the news that they want to hear, so I tell them 'It's alright.' It's not a lie because most of the time I can manage. Even then, I see the whole hearted smile fade a little bit because I didn't say 'I'm cured.' Others really don't care. And that...

I'm super sensitive to cold. Air conditioning quickly gets extreme for me, pools and water can be torturous and in winter, I'm always bundled up.  I have a hard time trying to explain why I don't like going swimming to others. They think I'm lazy or something, but it's honestly a struggle to build up the courage. I truly want to be able to get in the water and swim, but it's very painful. They don't understand, "yeah, it's cold to me too." So, I started to say it differently now. "It's like brain freeze in my bones." Literally. It's painful and deep ache to be cold. It tends to get the point across, but people are very insistent of course. I love when swimming pools are heated so I can enjoy the water but otherwise it's completely unpleasant. Never force yourself into a cold pool. Never let anyone force you. Don't listen to them; you shouldn't have to put up with pain for their enjoyment. If it were them in pai...

A couple days ago I had the chance to catch up with my cousin, of whom I had not gotten the chance to sit down and talk with in years. I enjoyed our time immensely. My cousin is very interested in food health. Somewhere in that conversation Arthur popped up. You can see where I am going with this. My cousin very much believes I could cure my arthritis by eating a raw diet, with plenty of white foods like garlic to support immune health. And I agree. I might be able to. I genuinely believe that people are able to cure themselves or go into remission through diet. I've seen it happen and it makes sense that if we put good things in our bodies, only good can come. But, of course, it doesn't work for everyone. I've seen it fail numerous times as well. Everyone's body is different, and it will react differently to different things. Let me say now that I've never really tried diet changes. Do I believe it could work? Yes, I do. I believe it can work for lots of people...

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...

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...

I stand at a family gathering, watching the events around me. I had been sitting all day and just needed to stand for a minute. Also, I had a bit too much chocolate cake and hopped standing would help my over filled stomach. That's when my auntie came over to me. "You shouldn't be standing: it's bad for your back." She means well. "I've been sitting all day, I really need to stretch." I didn't feel like adding the bit about stuffing myself with cake. I began to ponder the reason standing would be bad for my back when she began to speak again. "You know, the other day I read about a remedy that works wonderfully for people with chronic arthritis..." I could feel the corners of my mouth move up. Not into a grin, but into a smirk. The kind of smirk that appeared when my mum asked me if I liked a red and white striped blouse and I began to sing 'The Candy Man Can.' I tried to get myself to stop, but I couldn't help it. She...

I'm most likely correct when I say people with arthritis or any other chronic illness has probably heard one of these before. And being the very sarcastic teenager I am, I always have a great responce. :) "Autoim- what? Is it contagious?!" Autoimmune arthritis means that my own body is the cause of my arthritis. There are very many types of autoimmune diseases  out there, and most of them are chronic. And no, it's not contagious... sometimes I like letting people think that for a moment though. "Arthritis? Do you have hip replacements?" No.. I don't have hips of steal. Unfortunately, since most people associate arthritis as an old person's disease it is just expected that all of us have titanium joints. "If it hurts so much, why don't you use a wheelchair?" If you're not in pain at all, why aren't you moving all the time? "Why don't you take the medicine I saw on television?" Because it's not a...

Last night was yet another party, and I had a wonderful time at that. I am very much thankful for having a wonderful family and great friends, especially at this time of the year. Overall, I've been having a wonderful Christmas time with limited arthritis pain. The first least painful Christmas I've had in a while. I find this reason to celebrate! After Christmas I'm going back to hospital for a few tests and visits, which I will talk about after the holiday. However for right now, I feel no need in causing worry, sadness or anything of the such. So in the festive spirit, I'd like to forget the pain, medicine, hospitals and needles and say Happy Christmas!

Yesterday was a grand day. I got to spend the day with two of my aunts and we shopped and had a wonderful meal together. I rather like getting to spend the day with family exclusively, as I notice a lot of times people seem to forget that one another exist. Too many walls are built for love to be able to pass through. Then again, that seems to be the point. There have been many times in life when I've found that I have lost friends. Usually there are no fights, we just stop corresponding. And, of course, there are times when trust is lost and promises broken and it's in those times when people forget that anger is not the only emotion in the world. Perhaps though, that is just when you know that your ready to move on. However in those situations, I feel it is better to simply let communcation slip rather than to be hurtful about another (especially behind one's back). It shows  a lot of respect towards the other person as well as yourself to simply keep hurtful thoughts to...

In the photograph I keep beside my bed the youthful face looks back at me, her rosy lips and blue eyes. I can only imagine her hair was beautifully soft in gentle, blonde ringlets. Despite the gentle, lavender dress she donned, she wore a nervous ridgedness and stern face. She was probably the strongest woman I've ever known, with a life as geniune as she was. The legend of this great woman lives, not through the names of the daughters and sons, but in her own right. She is my hero. I'm proud to wear her name, and I only hope I can give her name the great justice it deserves. Everyday I miss her, but today I especially miss my beloved grandmother. My Gram. My grandmother often comes to visit, and she'll leave in a day or two, but my Gram never leaves for she is always in my heart.

I don't feel like pouring my emotions into a post today. Today, I don't want to talk about my arthritis. In fact, I'm not even in the mood to complain about homework today. No, today I'm just going to tell you about a fun time I had. The other night my guy friend came over for dinner, and after dinner some of my family came over. While he and I tried to watch a Harry Potter movie, my young cousin decided she must ask us a "silly question and you're going to laugh."  She asked if we were boyfriend and girlfriend, to which we replied no. Then she proceeded to ask our favourite Disney Characters. And some how we we're actors in her play of Hercules and Cinderella falling in love and getting married. Of course, Hercules and Cinderella with odd acents because you must distort your voice when acting in a child's play. I think the best part of this was that we got this on film. She very much enjoyed that she "Got to direct (and be the narrato...

As we have found my kidney problem is rather minor, I can say confidently nearly everything is back to normal. So, I'd like to post less about the news today and rather write what comes from the heart. It's often said people with hidden disabilities suffer more than they should. This is very true. Those with more outward conditions tend to be helped more, and this is due  to the fact people know it's the right thing to do. However, when you can't see what's going on you don't know anything is wrong. For this, I don't expect a stranger to hold the door or offer a seat on a crowded train.When I'm with family and friends though, I'm rather quiet in the fact I won't complain about pain or feeling sick. I don't expect life to stop just because of me. I don't want to burden my family or friends with my arthritis. Honest. Why should I always have to kill the fun? Every time I have, I always seemed to make everyone miss out on something. I...

Hello again. I've been home from holiday for a few days now, and ready to write about what has been going on. What I wrote in my last post was actually regarding my best friend, of whom also has arthritis. Her medicines, as well as mine and most other's, have a risk of cancer. We had a 'cancer scare' a few days ago, as  she needed a biopsy  to check for Lymphoma. After waiting a few nerve wracking days of waiting  for results, we found she does not have cancer. It was a huge relief, naturally. However now I'm going through  a medical scare of my own. I've demonstrated quite a few symptoms  of thyroid and kidney problems. In the past few days home, I've gone through several tests and shall go  for more tomorrow before seeing a specialist the day after. At the moment, I am alright. It was not quite that way at the doctor's office when we recieved this news. And it's still quite heart breaking for  my family and friends. Right now, I'm trying not...

I really don't know what to post about today. In all honesty I would really just rather not write something but I've been trying to push myself to do work everyday, whether it be the blog or working on a project. Since I don't feel like working on my project, I'm going to write on my blog about my project. Currently I'm working on a pencil sketch of a little stranger. My family's newest addition made her first appearance to the world earlier this week. She's so lovely, a dream really. I've fallen so deeply in  love with her: I constantly show my friends her pictures, though they don't understand how I'm so proud of a new baby. Anyway, my auntie got a picture of the baby with her eyes open and smiling so I've been drawing it to give to the proud mummy and daddy. I haven't finished it yet. I should probably work on it: I'm going to go visit them tomorrow.

This past month I've been going to non-stop parties and functions. Not out of wanting to go really, but of having to attend out of politeness, necessity or because I'm being dragged by my parents. I'm so exhausted and sore: These old bones can't take much more. I really can't handle going out. They aren't even over the top parties: We have supper, talk a little and maybe have coffee and dessert. Even a trip to the cinema after class took a lot out of me. Maybe it was the trip to the cinema (which is not often due to the fact it is several towns over), or maybe it was a long day of school and an hour of swimming. The point is, even going out often and doing practically nothing is tiring. Though I know I could be way worse, it is very true when they say kids with arthritis are kids in the bodies of the elderly. Even then, I've seen many elderly people who are healthier and stronger.

Some think they can. Even I do. Sometimes when I'm with my cousins I pretend we're siblings. I do actually have siblings but all of whom are much older than me. So when I 'm around family my same age, I like getting the feeling of being a big, happy family. Though I am content being a litttle, happy family :) . However there is one girl I wish was my sister. She is my best friend and we are two year apart in age (she being my elder). Also a great distance keeps us apart. We know each other very well and rarely see each other, often taking to Skype to talk everyday. We've laughed together and we've cried together. Never have I ever had a friend who knows me like she does. She has her own Arthur as well, but her's is the rheumatoid type in several of her joints. She often flares and is sick, and has numerous other medical problems. She is my biggest inspiration as she keeps on living through this. Often I wish I could be with her, and I wish I could be there for...

When Arthur is giving me a lot of pain, I don't actually paint or draw the pain. I mention this as a family member asked me if that's what I do. In all honesty, I don't know where that question came from as the things I draw are very gentle and do not reflect pain. However, I can tell you Arthur has influenced much of my artistic style. I don't mean that my arthritis has physically influenced it (mostly anyway). I mean that... well, let's put it this way:  When I'm randomly drawing, sometimes I draw people with odd bodies. People in fetal positions, twisted in ways people shouldn't be or even  stretched out in impossible ways. While it doesn't make me feel better, it often shows my cravings for a specific movement and sometimes helps people see that I feel bent and twisted at times. A friend of mine once described the style of which I do the bodies as 'Perfect for a monster or alien design.' Yep, that's what Arthur makes me at times: A monste...

People often say that the word is too over used. I know that they are targetting young kids who are infraunted with their 'boyfriend' or 'girlfriend.' But, honestly speaking, how can the word love ever be used too much? Sure: Love is a word that describes a very strong emotion but it also speaks of affection for one another. If you could not love anyone other than your baby, your mother, all animals and your partner of ten years I think the world would be a very lonely place. I admit, I'm not one to show all that much emotion however I do have much love towards others. I love my family. I love my friends. I love babies. I love making people laugh and seeing them smile. I even love my homeroom. Do I love everyone in the class? No. But I love our routine and the diversity, and I especially love hearing the remarks the boys whisper  while others are talking in class. Naturally as humans we can not love everyone, but we can all show respect and compassion towards one ...