I’m seriously liking living “on my own”. For the first time ever, I feel slightly independent. I rely on the public transit system to get to school each day, and it’s my responsibility to clean up after myself, cook, and get on the bus on time. I’m even doing my own laundry, with a little instruction from my landlord; but her washer/drier is completely different from mine at home!

I am going to hand my resume in to a local group home which is quite literally down the road from where I’m living. The money is apparently good, and even if it’s not the best it’s still a familiar place and it’s still money coming in. I can start saving!

Yep, I think living on my own agrees with me! I have a feeling college is going to be stressful, but I know that I’m going to thoroughly enjoy it. This weekend I’m staying here so I can hang out with a couple new friends that I have made and go to a PowWow the local native’s are having for everyone to get a glimpse of their culture. It should be a really rewarding, interesting experience.

Recently I switched from Community Development to Community Development with an Emphasis on Aboriginals. I had my first class yesterday and it was full of promise for the upcoming year. I like the sound of things we will be doing.

On a completely different note, my friend Mandy (who also has MHE) will get to meet JK Rowling in NYC this year. I’m so envious! If only I had entered the contest with her! Except I think it was only for people in the United States. Oh well. Have fun for me Mandy!

I am deeply sorry that I’ve failed to update my blog lately. It’s far from abandoned! I have just been super busy! The last week of August I was away at a residential camp with the recreational group for the developmentally handicapped that I worked at. The week was long and although it was fun, it drained my energy fast. It didn’t help that it rained almost every other day. The weather was damp. My bones ached the entire time. Luckily I was in a cabin with electricity and I was able to steal the electric heat blanket from the nurses cabin during cabin time.

It was my third time being at that particular camp with the members of the recreational group. Only this time, I had far more responsibility. I was the summer student and the cabin leader of my cabin. Not only did I have to run events and activities each day and ensure that everyone was having fun and doing their parts, but I also hosted most of the cabin troubles on my shoulders. On Monday, three of our volunteers left so it was just myself and one volunteer in a cabin with four members. We made out well enough; our members had fun and got the care they needed, but it was still stressful.

Although there were a lot of funny camp moments, when home time came I was relieved. It was such a long, stressful week for me and I couldn’t wait to drop my title of authority and relax. Of course it couldn’t be easy, the 7 hour bus ride was even more long what with all the things that just had to go wrong. For instance, bus #3 broke down 20 minutes after we left camp. We had to squish all of the people onto the other two buses, and it was a tight fit.

After I got home, I barely had time to relax. The next day I had to go into work one more time before leaving for school to do my evaluation on how I did this summer. It went pretty well, I think I have a job next summer – if I want it. I’m not too sure though, the truth is that this summer was really hard on me – physically and emotionally. I let the stress of the office problems get to me, and that didn’t help the physical stress my body was under. Camping 3 weekends in a row was hell on my bones; I don’t think I’ve recovered yet.

The very next day (the 1st) I went to the annual summer birthday party celebration (this year at my grandparents house). I visited with my family from out of town for a while, then decided to steal one more weekend at my boyfriend’s trailer, since I knew I wouldn’t get the chance to when school started. On the 2nd I moved the rest of my stuff into the apartment, and then on the 3rd at 9pm I officially moved in to the basement apartment that I’ve rented out for the school year.

The 4th was my “first” day of college, but not really considering it was just an orientation where they held a couple seminars like Essential Services, meeting your Student Adviser, and learning how to use the student email portal. Things weren’t really exciting until the 2nd day of actual classes, when I started to make friends.

I take the bus to the college everyday, and I walk around the school carrying a pretty heavy bag. My shoulders ache and my back aches, so does my legs from walking around so much. I don’t want to push around a trolley, considering there are so many stairs and it wouldn’t really help out at all. Those book bags with wheels only cause more problems when you aren’t wheeling them around because they weigh more. Needless to say, I’m not too sure what I can do. Lugging home 5 textbooks and my binders doesn’t help either, and it’s not like I can have 2 sets of textbooks like I did in high school, college text books cost a lot of money.

If anybody has any suggestions for me, feel free to say them. It’s only week 2 of college and I’m exhausted already; we’ve barely started our work load! The current work load is good, all I really have to do is read chapters of the text books so I actually know what’s going on in the lectures.

I also have switched to Aboriginal Emphasis, so my schedule is going to change around ever so slightly. I’m pretty excited about it actually, Aboriginal culture has always interested me. Next weekend a local reserve is having this huge Pow Wow and inviting anyone interested in going to it, the theme is Healing Through Laughter. I’m going with a couple of people from my program.

And that is what’s new in the life of me. I’m still trying to settle into college life and draw a line between school work and play time (because everyone knows you need play time in college or you’ll snap). I so far love my program and the people I’ve met are all cool and interesting in their own ways. My physical pain isn’t holding me back too much at the moment (knock on wood) but we’ll see as time goes on. I should probably start intervening anyway and making changes to the things I’m doing wrong (such as carrying around such a heavy bag load and walking around too much) but thus far I’ve been unable to solve my own problems (since I need everything I’m carrying around and I can’t have them move classes just for my convince).

But I’m liking it, and that’s the important thing!

Sometimes, I think of my MHE like a gift basket. Its a gift basket is a weird thing to compare my MHE too, but it works. You know those really pointless gift baskets you sometimes get at Christmas? And it has all those nasty foods and stuff that you would never eat or want? Well…my MHE is kind of like that. Its full of stuff I don’t want. Part of the “regular” package is extra bones, pain, surgeries, scars, nerve and muscle complications. Then you can have the “deluxe” package; which includes extras such as depression, immune disorders, arthritis in most joints, nerve damage, and more.

So far, I have the regular package and most of the stuff that comes in the deluxe package. Its frustrating because – like the gift basket – I don’t want it. It complicates things. It takes up time, and makes things difficult. There are more complications that can happen as you age with MHE, such as having your tibia and fibula fuse together. Even “regular” people age with difficulty, so I’m quite nervous about getting old.

I already feel old. I could barely do the regular walk today from my boyfriends house to Tim Hortons – and it was only about 15 minutes. Usually I can deal with that walk, as its not too far, but lately I’ve been finding it harder and harder. Speaking up has always been a problem from me; I find it difficult. I don’t want people to think that I’m lazy or a wuss.

Lately I’ve been thinking about growing old, and I don’t like the idea. I feel like I’ve already aged more then I should at 17 – I feel like an old lady! I’m going to soon need a walker to get around – and I won’t even be able to use “I just had a surgery” as an excuse!

I can just feel the panic attack coming on. I don’t know if I can deal with any more MHE related complications…

Before I started school, I had no idea I was “different” in any way. My sister Kate was my best friend, and I did all the same things she did. I amused her with my ability of double jointed fingers and I can recall chasing her around the house trying to tickle her with my “strange finger” that I could always hold in a strange way that she couldn’t. But Kate didn’t make me feel any different for having double jointed fingers at our young ages.

A rare talent?

Then we started school. Kate made friends with the kids in her grade and I made friends with the kids in my grade. For the most part, my classmates didn’t know there was anything different about me. I kept my double jointed talents to myself. From grade six down, I still was able to participate in gym – not well mind you – and I didn’t have my first surgery until third or fourth grade. I think that’s about the time when people started to notice there was something different about me. Perhaps it was because my teacher suggested I show my “battle scars” to the class after I had recovered from my first surgery. Even at that young age, as she explained to the class why I had the scars, I can vividly remember feeling so vulnerable and exposed, and I know there was tears in my eyes too. But my classmates, the ones who had started school with me and known me all my life, didn’t seem to alter their opinions of me. That’s the beauty of a small school.

I entered middle school with the promise to myself that I would be just as upfront and honest about my MHE as I was throughout my days in the younger grades. However, I found it very difficult. There was more students in middle school then their was in my entire public school – or at least it seemed that way to me. The strange faces outweighed the familiar ones by a landslide, and I was too chicken to go through with my plan.

When I had my first middle school surgery, only my close friends and the people I had gone to public school knew the truth. If anyone else were to ask me, I’d make something up. It was hard telling curious strangers the truth, especially when I knew they weren’t actually interested, they just wanted to know the actual truth so they could tell everyone else.

But my secret keeping was in vain, because people still knew I had some sort of disorder that required surgeries. They just weren’t informed of what disorder I had, so they called me Surgery Girl. Guys weren’t interested in me because I had “strange legs” – which I had thought I hide well with jeans, but apparently the shape of them was still notable.

Perhaps if I had been upfront and honest with my classmates, I would have had better years and stronger friendships. Grades 7 and 8 didn’t suck completely; I had friends who liked me for me, but the rumours were frustrating. All I wanted to do was blend in and not be noticed, but I stood out more then anyone because I tried to blend in. It’s rather funny actually, as I think my friend Mandy has the opposite problem, I think she’s mentioned that she feels invisible and wants to stand out. I guess when you try to be something, it doesn’t work out. For example, I tried to blend in and I stood out. I still stand out, regardless of what I do.

Now though, I’m finding that I don’t care if people know the truth or not. I don’t make up excuses or stories for why I limp; I stick to the truth, which is a pretty unbelievable story in itself. Several times people have asked me if I’m serious, extra bones? Thats crazy! As crazy and unbelievable as it sounds, its true, and I’ve come to realize that hiding a part of me was very foolish. People judge; it’s how we’re built. They judge regardless of medical disability, so even if I didn’t have a strange disability, I’d still be judged for something – whether it be how I did my makeup or wore my hair.

Dr. Seuss says it best; Be who you are, and say what you feel, because those who mind don’t matter, and those who matter don’t mind!

Parents worry about their children; there is no escaping that reality. They tend to worry more if their child becomes sick with the flu or a bad cough. They tend to really worry if their child has a disability or illness of some sort. Parents hate seeing their kids in any kind of pain; be it emotional or phsyical. If parents had it their way, then they would make it so their kids never felt pain or sorrow.

When I was younger, my mother would always tuck me in and lay with me for a few moments before I went to sleep. During these nightly rituals, I would sometimes confess things that were on my mind, like if a boy made fun of how my legs were different at school or if I got left out and expected it was because of my medical disability. On those occasions, my mom would get all misty eyed and tell me that she wished she could take it away from me and have it instead, that way I wouldn’t have to deal with the daily pain, the almost yearly surgeries, the feelings of being alone, and other things that come with have a medical disability. Instantly, I would feel guilty for making her feel sad about my MHE. I knew that if my parents had it their way, they would make it disappear for me.

As I grew older, I sort of stopped talking about how I felt regarding my MHE – for the most part anyway, there were days when I couldn’t hold it in anymore and the dams holding back that river of tears would just burst. I was afraid that by complaining about “insignifcant things” I would make my parents feel guilty for the way I was born. I also didn’t want them worrying about how I was dealing with things; as one day in the car my mom confessed that she and my dad sometimes wondered how I dealt with everything, and if I was dealing with it okay.

Its one thing wondering if I’m dealing with things okay myself, but having my parents wonder it is another thing. I don’t want my family thinking I’m weak for having bad days, so I keep them to myself as best I can. It’s rather contradicting though, because a lot of my family reads my blog. I still feel a little weird about confessing these bad days on my blog knowing that my family is going to read it and probably think differently about me; but I try not to think about that. I want to be honest in my posts to help other teens with MHE – or any other kind of disability that makes them feel like an alien or something.

Yes, there are times when I feel like a freak of nature. Yes, there are times when the physical pain gets to be too much and I just want to crawl up in a ball and sleep it away. There are times when I wish I could do all the things my friends and sisters do – figure skating, rollar blading, horse back riding, and snowboarding – without worrying about getting seriously injured. There are times I feel like I’m trapt in a bubble because my parents don’t want anything bad happening to me, and I dislike that bubble. I want to fall and scrape my knees but still know that they’ll be there to bandage it and tell me I’m not an idiot for trying something I really wanted to experience. I want to feel like I’m living and having fun, without them being mad at me because their scared of the outcome.

But I honestly don’t begrudge my parents anything. They keep me so close because they don’t want to see me hurt; and I love them for it. I’d probably be the same way if I was in their shoes. They are parents, after all, and it’s practically programmed in their heads to be over protective.

I’ve been thinking a lot lately about what I would change if I had the money for plastic surgery. Come on, who doesn’t think about it? That thought is sure to have crossed every female’s mind at some point – even if it was a “Wow, that’s digusting – I would never do that to my body!” But really, would you? If you had as much money as Paris Hilton or Britney Spears?

I’ve been under the knife a lot of times – just not for plastic surgery. Plastic surgery would probably turn out to be disastrous for me, because of the way I scar. Still though, I often used to dream of being scarless and perfect – I even thought about looking into having my ears pulled back.

Now though, I’m completely content with the way I look. I wouldn’t change a thing – unless said scar was causing me a lot of irritation and just not healing properally. Yeah, I’m still really senstive about it and you probably wouldn’t catch me on the beach in the near future – but I don’t hate myself enough to change myself.

The scars all are there to remind me of the things I’ve gone through. Yes, even if they were gone then I would still have the memories of each surgery, but they are like a map – helping me remember where I’m going and where I’m from.

A couple years ago, I thought that if I changed myself then people would like me better. I wanted to make myself better for them, not me. Media can be a scary thing, can’t it? Telling people they have to look a certain way in order to be happy. And to think I believed that bull crap about the perfect shape and size.

I don’t want to look that certain way anymore. I’m happy with who I am; although it does get annoying at times and it’s quite exhausting to always be thinking about the consequences for my actions. I can’t just go snowboarding and have fun with my friends without wondering what the physical effect will be. I still want to experience all those fun things my friends do; and maybe I could, if I was careful about it.

Still, it beats being a size 0 with tons of eating disorders. Besides, it was rare in itself finding someone who actually hated me because I had extra bones or scars. It was silly of me to hate my scars and want them removed. I know that now.

So my message for today is; be happy with who you are, because it isn’t going to change. Plastic surgery just seems to make things worse. Don’t believe me? Two words: Michael Jackson.

Ya, I think I’ll keep the scars. And my sticky out ears.

Since my post on “Expensive Thoughts“, I’ve been thinking a lot about my game plan for the future and what career I’m going to pursue after high school. Ever since I stated volunteering at Sunrise Youth Group, I’ve wanted to work with the developmentally challenged. There is just something about them, you won’t know what I’m talking about until you actually see for yourself so there’s no point in trying to explain it.

The ideas I’ve been looking into are; Educational Assistant, Human Services Counsellor (which I couldn’t find a description for), and a Child or Youth Worker. Those job descriptions have captured my interest for quite some time now, but lately I’ve been wondering about benefits. I need to choose a career that will be flexiable, and offer benefits. If it doesn’t offer benefits, would I be screwed over if I had to take time off for a surgery?

Of course when I went to the Guidence Counsellor, she told me that I really wouldn’t be able to base it on the jobs in themselves, but I’d have to consider where I would be working. Will I have a contract? Be a part of a union? Things like that.

I honestly don’t know why I’m so worried about all that financial crap, but I don’t want to waste all my dads money on schooling for a job that I can’t afford to take time off for surgeries. Surgeries aren’t always something I can put on the back burner for a time more convenient, sometimes it’s a now or never sort of deal.

In the comments over at italk2much for my review, Ish mentioned in his comment “It’s great that she’s not gone into hiding because of her disease. Not many people would talk about things like that easily.” I was flattered and touched to read that, seeing as it is hard for me to share this part of myself with everyone out there in the blogging atmosphere.

In the past, I admit that I have cowered in the corners of my self and made up stories for the questions people asked me, because I didn’t know how they would react to the truth. It’s always awkward telling people because they usually aren’t all that interested in hearing a long, indepth story about it. The strange part is they aren’t satisfied with a simple “I got it from a surgery,” in response to them asking about my scars. They ask me what the surgery was for, and almost always lose interest halfway through my explanation. It’s a little easier on this blog to talk about my disorder, but it’s still pretty difficult. I have a lot of stuff I want to say, stuff I want to talk about and share with everyone – but it’s sometimes really difficult to put all those thoughts into words that I know at least one person will read after I post it. But I’m doing it, slowly and maybe not very well, but it still counts for something.

I also admit to hiding. In grades seven and eight I didn’t even wear a t-shirt to school. I still don’t feel 100% comfortable wearing t-shirts, and I’ve never worn a short skirt to school. I did buy two short skirts last summer in hopes of breaking out that complex of not being able to show the public my legs, but I haven’t worn them anywhere outside my house. I’m working on that though, and hopefully this summer I will be able to wear the skirts.

I was flattered by a lot of comments. Some people said I was strong and others complimented my ability to not let my disorder define who I am – which I try not to, but it is a part of who I am and it has sort of shaped who I am today. I understand that it wasn’t some people’s cup of tea, but that’s okay; you can’t please everyone in the world and usually “medical” blogs aren’t very popular. I didn’t make this blog for a popularity contest, I made it for me.

One comment was made saying I was totally made up, and screaming for attention. Surprisingly, instead of bumming me out that comment really made me laugh. I would really have liked to be making all this stuff up, but fact of the matter is I’m not. I have this disorder. These are my thoughts and feelings on having it – it isn’t made up. Although I must confess, I do like a little bit of attention every now and then – who doesn’t? But that’s not the purpose of this blog at all. I’m surprised that person missed the purpose, seeing as I made it clear in my first entry, but whatever. Although everyone is gifted with a brain, a lot of people don’t know how to use it.

My review came over at italk2much; two smacks is pretty good for this blog, if I do say so myself. The main point of even setting this blog up for a review was to get more hits and hopefully come to achieve one of the goals I talked about in my first entry, which is bascially to just give teens who have MHE something to relate too. I know before I found my MHE friends; Mandy, Jodie and Nicole, I felt really lonely. It was like I was the only one in the world who had MHE. Of course, I felt all that before I discovered the joys of the internet and the Bumpy Bone Club. The world is a lot smaller when you don’t have the internet. But that was all about five years ago, and now the world is much bigger to the likes of me.

In any case, the Bumpy Bone Club members have helped me out a lot. They’ve sympathized with me when I was feeling down, and their stories gave me a lot to relate too. I was hoping that this blog would be a more personal way of giving teens something to relate to; they could read about my daily triumphs, set backs, and experiences with MHE.

I seem to be achieving that goal, slowly but surely. A lot of my MHE friends come here to read it and I’m sure they take a little out of it. Although I know there are some people that don’t understand the meaning of the blog or why I made it. I suppose its all in how you interpret things though.

I just finished writing a letter to my pen pal Mandy in the States. During the letter, I briefly mentioned to her how I used to feel about myself regarding relationships and other such things. Although it was mentioned briefly in the letter, I now find myself thinking about the way I used to think. Are you following me still? Probably not. I’m not making any sense really, but I will in time – I promise.

In grade seven and eight, and most of grade nine too for that matter – I truly believed that I was deemed “unworthy” of having any cute, decent guy crush on me. I automatically thought that they wouldn’t like me after finding out about my MHE. Most of the times, I was right, but only because it was back in grade seven, when boys still thought belching and farting was cool – hell, they still think belching and farting is cool. What I mean to say is they were even more immature in grade seven then they are now, which is saying a lot – for the most part anyway.

In grade seven, I also thought that “a person like me” shouldn’t wear makeup. I wasn’t meant to be a normal teenage girl, so I shouldn’t act like a normal teenage girl by wearing makeup and carrying a purse. That’s right – I didn’t even think I was worthy of having a purse! I don’t know where my train of thought came from, well me obviously but I don’t know why I thought that.

I know now (obviously) that I was completely wrong with my outlook on life. It was ignorant of me to think that of myself, and it’s just as worse as other people being ignorant towards my medical disability. Now I know that I am just as worthy of having relationships as anyone else in the world is. I wear makeup, and do “normal” teenage girl stuff. Since I grew up a little and realized how wrong I was, I’ve never thought anything like that again, because that way of thinking is wrong and very self harming.