Lately I’ve been very busy – or as busy as someone like me can get; someone with no actual hobbies, obligations or places to be anyway.

Exams were exhausting. As usual I didn’t study for any of them. The extent of my studying was to make a cheat sheet for Math. That was all I did. Still though, I ended up passing every class – much to my intense surprise. I thought History was a lost cause after taking one look at the exam. Stupid key people and your strange, long Russian/German/Japanese names.

After exams I was busy planning my best friend’s birthday party and getting ready for yet another Sunrise Youth Group camping trip – which I ended up coming home from because I didn’t feel to great. My stomach hurt a lot and my back was still majorly sore from sleeping on a really hard bed at my best friend’s birthday party. But that’s really all I’ve been up to, aside from catching up on reading and fanfiction (yes, I write fanfiction stories. I’m so lame).

Anyway, semester 2 offically began today. I have one week of in-school seminars and then I can finally start co-op on the 12th of February. I’m very excited about it, in case you couldn’t tell. Wait – I’ve barely blogged about it, so it’s likely that you couldn’t tell…oh well. I’ll make up for it now…

OMG! OMG! OMG! I’ll actually be working! A real job! As in practically 9-5! At one of my most favourite places in the world! I’m so excited about all the things I’ll get to do; I’ll learn the office and business side to Sunrise Youth Group, plus I’ll get to maybe work with the EA’s and see what that’s all about. Not to mention one of my most favourite people in the world is in the Day Program. He’s so funny and cool!

The only thing I’m slightly concerned about is my energy level. During the seminar today, my co-op teacher informed us that it would be difficult as full-day co-op students to get used to the rotinue. It’s actually working instead of being in school – which is practically sitting down all day. I’ll be up and about doing whatever tasks Niki wants me to perform. I’m worried that I’ll end up having to miss a lot of hours, and that will screw up my quest to earn 6 credits by getting extra hours (yeah, I didn’t know you could do that in co-op but apparently you can!).

I’m worried about my physical health. I don’t want to push myself too far too fast, but I really need to get my body used to working full time jobs. What am I supposed to do when I’m older with bills to pay and a house of my own? I’ll clearly have to learn now how to suck up and ignore my body’s complaints.

I think I’ve explained before that I usually get tired quicker then people without this disability – it takes a lot out of you walking around with extra bones, don’t cha know – and I really don’t want to end up causing more health problems for myself, but I really want to co-op. Working with the developmentally challenged is something that has always interested me, and I need to see if I can actually physically do it – or at least physically bare it.

I have about four months to figure it out.

I don’t know if my tendency for getting cramps is because of my MHE or what, but I tend to get them a lot, especially during damp or cold weather. My dad gets them too, and I’m assuming he has working outdoors a lot to thank for his regular back, foot and leg cramps.

When I get cramps, it hurts – a lot. It’s very difficult to hold back the tears because it hurts so much. The only thing that seems to work on a cramped foot is heat pads. I guess the heat gets into the muscles that are cramped and relaxes them. Without heat pads, I don’t know what I’d do. I guess foot massages work too… but I generally don’t like people touching my feet. Usually when people do touch my feet, it makes them cramp up. I’m weird that way.

Last night I was lucky enough to get a really bad cramp in my foot. What makes it worse was I wasn’t at home, I was at my boyfriends house. We were joking around and he pushed me off the couch – I fell and when I did my foot cramped. I tried my hardest to hold back the tears but it hurt so frigging much! It was really embarrassing for me. I hate crying in front of people, and I hate showing when I’m in pain. But he was sweet about it and went and got me one of those electrical heating pads. He wrapped my foot in it and held it in his lap, and it worked. Heat becomes my best friend when I have a cramped foot. I’ve never had a back cramp before (thank God, and knock on wood – because I don’t ever want one), and I can take leg cramps better then I can feet cramps. I don’t know why, but feet cramps hurt me more.

I’d like to know everyone else’s thoughts on cramps. Does it hurt you really badly? What helps with the pain? Anyone who gets cramps can answer those questions. I’ve always wondered if people who don’t have MHE find it as painful as I do (which is a 10 on a scale of 1-10 during the cramping, and a 5 after I’ve managed to stop the cramping – it still aches afterwards).

Sometimes, when I have those really bad days, I can’t drag my mind away from who I’d be if I didn’t have a medical disorder. I create little stories in my head about the person I’d be if I didn’t have MHE. Perhaps I’d be closer to my friends, having nothing to divide us. We would have more to relate too, and I would probably enjoy high school a hell of a lot more then I do now. Perhaps I’d be more obsessed with material objects, and more in the “social circle” at school. I imagine I would be more like my sisters, and I’d probably have stronger bonds with them. My MHE is a divider in my world, but only because I’ve let it become so.

Has having MHE made me a better person? If I didn’t have MHE, would I lack all of the qualities I currently have? Are they a result of having MHE? I’ve noticed I have more empathy then most people my age, is this because of all I’ve been through? I have no idea. I also don’t know if MHE has made me a little bit kooky at times. I’ve lived in the real “teenage girl” world of clothes, boys, gossip, makeup, and other “fads”, but I’ve never found them to be extremely important and I’m aware that there are worse things then wearing a hideous pair of shoes. But if I didn’t have MHE, maybe I would handle things differently.

I have a million questions on this topic. And after thinking about it long and hard, I’ll ask myself if I would trade everything I am now just to be MHE free. I don’t think I would, if given the option. I’d probably loose all of the personality traits I’ve developed over the years. Even if it meant ending the future of surgeries ahead and getting rid of the constant worries and pains, I am afraid of being someone that I would hate more then the person I am.

I’m 17, it’s practically a rule for me to find fault with myself. My only fault is that I don’t love myself completely, that I don’t trust myself. I’m merely passing through life and dealing with things when I should be living life to the fullest. I’m afraid to do things that might cause me harm, such as snowboarding or skiing. My parents and my doctors have scared me from doing the things I really want to try. Not intentionally of course, but because they worry about me and about what were to happen if I hurt myself. Because I have MHE, my bones wouldn’t heal the same way if I broke them, and my doctors can’t predict how they would heal because I’m the only case at my hospital and I’ve never broken anything before.

But if I was MHE free, maybe it would be worse. Maybe “normal” teens have it worse then I do. I am able to think for myself, instead of thinking like sheep in a herd – not saying teens can’t think for themselves, they can, but most choose not to. When they think about things, they think about how it will affect them socially. I feel empathy and I don’t bully people. I try not to judge someone, and I never judge by first impressions or the way someone walks. I have trouble dealing with everything occasionally, but maybe it’s harder being a teen without a medical disability because they lack all the things I know and won’t see all the things I’ve seen for many years. Reality will be slow hitting them.

I still can’t help thinking about that though, about who I would be if I didn’t have a medical disability. I guess the grass is always greener on the other side. My siblings and peers probably envy me because I can take “long holidays” off school, but I envy them because they aren’t forced to take breaks from school when their body reaches it’s breaking point.

I’ve felt both everyday for as long as I can remember. The pain comes hand in hand with the worries. Worries like; if I tell my parents, will they get annoyed? Will it result in yet another surgery? What will my peers say when I come back?

I try to keep any pain I’m feeling on the down low, because I don’t want to annoy or upset anyone. Or seem like I’m a whinny complainer who can’t take the pain. Over the counter medicines like Tylenol and Advil don’t help with my MHE related pain, so taking those ‘pain killers’ is pointless. I’ve come up with alternative ways of dealing with pain: I ignore it.

For the most part, it works. I can block out a lot of things generally, but sometimes it gets to be too much. At that point, I’ll smother on a lot of Rub A535 or a heat pad. It helps for the most part, but the pain is still there. It helps dull it down a bit though, so I can go back to ignoring it.

For the past couple of years (more notably in the past few months), my toes have been causing me a lot of discomfort and immense pain if I happen to smash them off something (which happens frequently) or wear shoes that are too tight (like I did on semi night…not such a good idea). I’ve mentioned this to my parents, and they’ve told me to remember to tell my doctor when I go for my appointment in January. Of course, I already know what this will most likely result in.

Another surgery. This time, most likely a reconstruction surgery. I’ve never had a reconstruction surgery before and I’m not sure what to expect, but it will probably come with a lot of pain. Along with the pain of another surgery comes a flood of worries. I’m assuming that a reconstruction surgery will mean I will have to take a lot of time off school. Next semester, I’m to take Writers Craft (a really difficult course that’s all about the craft of writing… in case it wasn’t obvious already) and a two-period afternoon co-op at Sunrise Youth Group. I was really looking forward to next semester.

All last year, I worked my butt off so I could get into Writers Craft. I didn’t have the required prerequisites – which was grade 11 University English – but my principle gave the go ahead because I worked really hard. Not to mention, I was excited about being a co-op student at Sunrise. If I have the reconstruction surgery on my toes, then I will miss a lot of time. I’m worried that Niki (the program director of Sunrise) will regret taking me on as her co-op student. Not to mention, I’ll probably miss out on a lot.

But I’m going to have to wait until January to find out what’s really going to happen. The waiting is going to stink though.

Winter has never really been my favourite time of the year; the cold weather makes my old bones ache far worse then any other time of the year. Not to mention, the huge amount of snow we get in Canada really slows me down. I hurt myself a lot during the weeks of winter, by slipping on ice and falling. I’m a clumsy girl.

I’ve yet to find a decent pair of boots for the winter, and usually end up just wearing my running shoes – so my feet get cold and sore. The boots that I currently have are what I’ve nicknamed my “old lady” boots – I don’t like wearing them because I feel like a dork. I’ve always loved shoes, even if I can’t wear most of them because they’re too uncomfy, but I draw the line at anything old lady-ish. That picture just below is what my current boots sorta look like. I don’t like them because they’re very plain. I like wild, pretty things. So I don’t like wearing these. Plus, the tread sucks. I still manage to slip and fall on my ass! In Grade 10, wearing these boots, I fell down my porch steps and fractured my wrist.

In Grade 7, I used to carry my running shoes to school in my bag so that as soon as I got to school, I could change out of my ugly boots and into my running shoes. As it is, my book bag is already way to heavy for me. Adding unnecessary weight to it was silly, and I would always end up hurting my back even more. Not to mention, it was a major hassle for me. Usually I have to sit down in a chair to put my shoes on if I can’t just slide into them (I’m one of those lazy people who leaves them tied up so I don’t have to tie them again the next time I put them on). There isn’t anywhere I can sit near my locker to change my boots. So I usually ended up hopping on one foot and looking like an idiot while I tried to switch from my ugly old lady boots to my running shoes.

Now for the past couple of years, I’ve been searching for a dream pair of boots that will keep my feet warm in the winter but will still be considered “fashionable” for high school wear – and not make me too hot while I wear them side. I’ve tried hiking boots, and I’ve yet to find a pair that’s comfortable enough because of my oddly shaped ankles. Not to mention, hiking boots are quite heavy.

I’m quite fond of those “fuzzy boots”, you know…the ones with fuzz balls hanging off strings that seem to be the “latest fashion”? I’ve seen a girl at my school with a nice black and white pair, and the best part about these boots are that they are flat. Most lady’s boots have huge heels – which is ridiculous to me because what good will they do if you walk across a patch of ice? I’ve never been able to wear heels, and I’m not going to even attempt it on a bunch of snow and ice. That’s just foolish.

So on my Christmas list this year, is a pair of those lovely fuzzy boots. With good tread. Those black and white ones in the picture above look like they have a nice tread, and maybe I’ll spend more time on my feet this year, opposed to my butt.

Sometimes, the things that please us the most are really small things. These things warm the deepest, coldest corners of our souls and make us smile from the inside out. Today, I’ve just experienced one of those feelings, and it instantly put a smile on my face.

My older sister, Kathrynn, is in college. She chose to write about me for an oral presentation she had to do for one of her courses. At first, I wasn’t too happy with this idea because I didn’t know why she wanted to write about MHE and, well, me. Kate is a very guarded person, she keeps her feelings and her views on things to herself. We’ve never really discussed my MHE on a personal note, so I was very surprised when I found out a couple weeks ago that I was to be her topic. It seemed like to me that Kate didn’t have the slightest clue what I went through on a daily basis, and she acted as if I was faking not being able to work or go to school to get out of things. I’m not sure if she intended to come accross like this to bug me like sisters do or if it was all in my head in the first place.

After I finished reading her written part of the project, I realised that although Kathrynn doesn’t always show she knows and understands, she does. In her paper, she starts off asking the class if they’ve ever judged someone that they didn’t know. Then she says “after today, I hope to get you all to think twice before commenting on something as small as the way someone walks“. I guess she wrote that because she knows how much little comments about the way I walk hurt. To most people, it may seem like they’re just “making an observation”, but to me its a reminder of how I’m different. After this, she goes on to explain MHE and why she chose to write about it – and she wrote about it because of me. She explains the nature of MHE and the surgeries I have to have, and for her conclusion she uses one of the poems I wrote ages ago:

Look me in the eyes,
tell me if what you see
has anything to do
with my MHE.
Do you know who I am?
Do you know who I’ll be,
if you keep laughing
and making fun of me?
You call me gimpy,
you laugh and stare.
You think I can’t hear you,
but I am aware.
I know why you mock me,
And I don’t blame you.
You honestly have no idea,
what I go through.

Then she wrote “It really hurts me to see or hear people making fun of her for the way she walks or becasue she has extra bones.” This sentence is one that nearly brought me to tears. I had no idea she knew about it, or cared. Often when I confined in her, she just shrugged it off and told me not to worry about it – I interoperated this to mean she didn’t care. In reality, she just didn’t know what to say, or how to form the sentences.

Not only is it hard growing up having a medical disorder, but it’s hard for the siblings of people with medical disorders as well. They undoubtably have to answer just as awkward questions, and although they don’t have to go through the surgeries themselves; they have to watch a loved one go through them. They worry and they cry just as much. The comments and insults hurt them as well because they feel powerless and at a loss of what to say or do to prevent it. Sometimes this leads to them getting frustrated with the source of it; which leads to comments that are said and later regretted deeply.

I volunteer at a place called Sunrise Youth Group – a non-profit charitable organization for adults with developmental disabilities such as Down syndrome and Autism. I’ve been doing this for a year now, and I love every minute of it. The members are so amazing and fun to be with, they always manage to put a smile to my face. They certainly make you think twice about feeling sorry for yourself because they are always so happy and content with life. It makes you wonder how you could ever complain.

Since I’ve started volunteering, I’ve had more confidence and less epiosodes of pitying myself. It’s hard to hate what you’ve been given when you look at people who have it “worse”, yet who are the happiest people around. We can all learn something from this.

Volunteering is a healthy way to give back to society. It makes you feel good about yourself and the people you’re helping feel good about themselves, and it’s fun. In the end, everybody wins. You learn a lot of good life experiences (and earn your required community service hours for high school) and it’s something that will stay with you for years to come. I was finished my required 40 hours within less than a month, but I’m still keeping track of everything because some schools offer scholarships for those with lots of volunteering hours. Not to mention, working with people who have special needs has always been something I want to do.

If you don’t have a place like Sunrise around your neighbourhood, you could always try volunteering at a hospital, at an old folk’s home, a soup kitchen, or even a community center for troubled teens. Choose something that is good for you and that you think you’ll enjoying doing. For instance, if you don’t get along with teens then volunteering to help out with trouble teens probably isn’t your best option.

Everybody needs a happy place, somewhere to go where they can forget about their own problems and focus on someone elses. Sunrise has given me a place to go where I can be myself and develop friendships with really great people. I strongly suggest looking into something like that.

Working, making money – having a job. It all means the same thing; freedom, and independence. Every teen wants that, every teen wants to have their own paycheck and have money to spend on the things they want. But what happens if you have a medical disorder that makes working difficult? It’s frustrating searching for a job in “normal” circumstances, but it’s even more frustrating searching for one when you have all these limitations on what you can or can’t do.

I personally can’t do shift work since my last leg surgery. Standing up for a long period of time causes me extreme pain, and I just physically (and probably emotionally) can’t do it. I’ve only had two “real” jobs before. I worked at Tim Hortons for two and a half years, and that wasn’t too bad because I worked in the mini kiosk and I was able to sit down whenever I didn’t have customers. It was never really busy in the kiosk – except for holidays. I had to quit this job though because one of my managers got into a fight with my sister and my mom, so my dad made us quit.

In September, I started a job at Wendy’s. I had the job for less then two months, then I had to quit it. I just couldn’t do physically do it – standing up for the four hour shifts they gave me was so difficult and painful. My managers and co-workers also started getting a little annoyed at me because I took a lot of sitting down breaks. I quit because they all thought I was lazy and that I was a slacker.

In truth, I work as fast and as steadily as I can. Sometimes, that’s difficult to do though. I’m exhausted after a day at school, and I’m sitting down for the majority of the day while I’m in classes. Working in fast food means you have to be fast, and when I’m in pain I can’t be as fast as the other workers. So I quit.

It’s been frustrating for me since I quit my job at Wendy’s because I long for that freedom of having my own pay check. I want to be able to spend my money on what I want, or to save it – whichever I feel like doing. With it being my money, nobody would get made at me for buying a $100 pair of shoes. With Christmas coming up, I’ve been even more stressed out. Even though we’re all doing Secret Santa this year, it’s still going to be expensive. I’m buying for my younger sister Josephine, and getting her something cheap would be really lame. I also have to buy for my boyfriend, because I know he’s buying for me. Not to mention, I have to buy for the boys and possibly my best friend if I can swing it.

Usually, I get money off my parents. But with it being so close to Christmas, no one has any money. It’s already been spent on other things. Plus my dad is self employeed, so he doesn’t always get paid on time.

I’ve been looking into a couple of different options for me. If I lived closer to a mall, then I would try out retail but since I live about 30 minutes away from the nearest mall and don’t have a licence, I can’t really explore this option. A friend of mine also suggested asking any local business if they need extra help. So I’m going to try that option out as soon as I can.

Another suggestion that was given to me by a friend was a place like Goodwill that will help people with disabilities find jobs they can physically do. I’ve contacted my OT about this one, and I’ve asked her to get me some numbers. I’ll keep you all posted with how it goes.

I’ve changed my settings so that anonymous people can now comment. I know I’ve been bugging all my MHE friends to read and comment, but none of them have blogger accounts so they never comment. Feel free to now everyone! Just remember to leave your name…that way I can know who’s commenting me!

I decided to take a couple pictures of my legs, feet, and arm to give you guys (who don’t have MHE that is) a feel of what it looks like:

I am actually standing up straight. I know it doesn’t really look like it, because my legs are all crocked, but I am. You can see a couple of the scars I have, the newer ones are the purple ones. If you look closely enough, you can see one of the old scars above my right knee (well, the “left” one from how you guys are looking at it).

My legs appear to be crocked because of the extra bones I have in them. They used to be a lot worse, but I had a surgery last year to remove the really big, sticky out ones that were bugging me in both appearance and what they were doing to my nerves and such.

This is a picture of my feet (clearly). You can see the extra bones on my ankles and you can see on my left foot the three toes pressed closely together. My ankles and toes cause me a lot of problems. For instance, my three toes on my left foot at the end that are sort of squished together always have to be in that position or else they will cause me a lot of pain. It’s really frustrating, because I have to buy a certain kind of shoes and trust me, they aren’t very “fashionable”. My ankles are forever locking up on me, and that’s quite painful too. It also makes walking difficult, so it’s another major annoyance of having MHE.

This is a picture of my right arm, I’ve had two surgeries on it. It’s one of the scars that I’m very sensitive about. It’s a perfect example of the keloids* on the majority of my scars. Keloids are the “bubbles” that appear on the scars of people with sensitive skin. I even have a few on some cat scratches I obtained six years ago from a really mean cat we had. Anyway, to me this scar is so big and ugly that I try to hide it with longer sleeves and hope that it will soon die down a bit – in the sense of being huge, angry and ugly.

And there you have it, some examples of what MHE can look like on a body. They aren’t very good pictures, but bear with me. It’s a small idea of what it looks like, right?

*I’m not entirely sure if I spelt that right, so please excuse me if I didn’t. It’s a very fickle word to spell. It’s said like “Key-llyods” though, if that helps any.