Sometimes, I wonder if theres something seriously wrong with me. When I have my downs, they’re really down. I could be just hanging out with friends and suddenly I’ll feel so insecure about myself that I almost cry. Almost, but I don’t, because my friends or whoever I’m with might think I’m a crazy if I did.

Although other times I think I’m perfectly normal, I mean its normal for any girl to feel insecure about their body. Even if its one little thing, like having pimples. I find comfort in that, because if everyone feels insecure sometimes…then its okay for me to feel insecure, right?

I’m much better then I was a few years ago, I know I’ve spoken of the days when I would only wear long sleeved shirts and baggy pants. Let me tell ya, not good days. The school was always so hot and stuffy and I was too insecure to roll up my sleeves, let alone wear shorts or a skirt.

Although I still find it awkward when people point out the huge ugly scars on my arms, I find it slightly more comfortable to dress for the weather. If its hot out, I no longer wear baggy heavy jeans and long sleeved shirts. I still tend to stick to wearing jeans but I do wear t-shirts now. I still don’t like wearing skirts because my MHE is very noticeable in my legs, more so then my arms. Plus I did wear peddle pushers to school one hot day in grade 9 and went home not even 20 minutes later because I was paranoid that everyone was staring at my legs.

I still get paranoid about people staring at me, thats why it makes me uncomfortable to have strangers stare at me. I know that everyone does it without knowing, I know I do it too, but it always makes me anxious if strangers stare at me too long.

I wonder if I would feel more confident if I was a guy. Generally they don’t care about other people judging them. Girls are crazy insecure about stuff like that. I know a lot of guys are too but most of them have that “I really don’t care” attitude. I admire people with that “I really don’t care” attitude. I want that attitude. I’m still trying to get it. I’ll let you all know when I succeed.

My younger sister has a habit of dragging me into every argument with our parents so she can win. Most recently, an argument over jobs. She has decided she doesn’t like working at Wendy’s and wants to quit so she can work at a spa. She’s not yet 15, and wants to work in a spa. My parents set a rule down for us when my older sister was our age that we would work close to home until we got our own wheels. The nearest spa isn’t close to home. My mom also pointed out that she would lose her cell phone if she quit her job, because she wouldn’t pay for it.

Then my sister brought up the fact that I don’t pay for my cell phone. I don’t pay for my cell phone because I don’t have a job. I don’t have a job because I can’t find one that I can physically do, shift work where you have to stand for 4-7 hours on end really kills me. I’m also trying to focus on graduating, and co-oping at SYG from 9-4:30pm everyday, 5 days a week is exhausting enough for me – getting a part time job I can barely do on top of that would screw up everything. I would miss days at co-op because I would be too tired or sore to go in. I wouldn’t graduate this year, and in turn I wouldn’t be able to go to college possibly in the fall.

I don’t like it when she does this, because it makes me feel like a free loader. My other sister also points out too many times in a week that I don’t have a job and don’t pay for anything. I don’t like feeling worthless, and I feel worthless every time I hear that argument; that “I don’t have a job and I don’t pay for my cell phone so why should they” argument.

Its very frustrating.

One of the most frustrating things about MHE (in my opinion) is the lack of energy. It takes a lot out of me just going to school, and I had to quit my last job because I just couldn’t stand for the 5 hour shifts they scheduled me for. For the past three days I’ve been on my feet running around, and it feels like I’ve been on my feet for double that small amount of time.

On Thursday I ran around all morning trying to draw and paint 20 shamrocks, finish painting the banner for the fundraiser, and get all the membership packages ready to go before noon. The girl I co-op with wasn’t coming in until 1pm, and my supervisor was running late so I was doing all that by myself. I also had to watch Day Program for a bit while the staff helped a wheelchair member in the bathroom. I had to finish all that stuff plus decorate for the St. Patty’s dance that night. I was running through all three jobs at once trying to do them all at the same time, and that didn’t really help me out, and only made me even more tired. So when the girl I co-op with finally got there I asked her to finish painting the banner (as I had completed the shamrocks and membership packages and I had to go dance shopping).

By the time the dance rolled around, I was too tired to even dance, although I had promised several of the members I would dance with them. And then I felt bad because I couldn’t. My legs and feet were killing me. After the dance I went to Second Cup with my boyfriend and a bunch of his friends, so that walk put a strain on my already sore legs and feet.

Friday was my day off, but I still did a lot of walking because I went to go see a movie with my boyfriend and a couple of his friends. Although it actually wasn’t a lot of walking, it was for me. A 10 minute walk feels like a 40 minute walk, and I hate feeling like I’m slowing someone down.

Then the St. Patty’s Day Laugh Festival and Dance was tonight. I went to the hall at 12pm to start decorating, and then did coat check from 7pm until 10pm. I was trying to stay until 1:30pm so I could help with the clean up, but I just couldn’t do it. My legs were burning and I was so exhausted. I feel really bad because I didn’t stick around to help clean up or help with coat check again when everyone wanted their coats at the end of the night, and to add to my pile of guilt is the fact that the last couple of camping weekends I’ve burnt myself out before the end and made myself sick.

My problem is I’ll dive into a task, such as painting, decorating, or doing coat check, and I won’t stop until I’m exhausted. Unfortunately, that happens sooner to me then it does other people, and I’m left feeling lazy and fearing that the other people will think I’m slacking. I’ve tried pacing myself, but co-workers just get annoyed with me because I take too many breaks. Like when I worked at Wendy’s, I could take eight 5 minute breaks and they wouldn’t do anything to help dull the pain in my legs or make me less exhausted. I suppose chronic pain makes you more tired faster.

Trust me, it’s very frustrating.

Honestly I don’t remember MHE effecting my life when I was really little. I don’t know if I knew that there was anything wrong with me then. Well, I was looking at some old pictures of me when I was four if I am correct… guess what I saw… tumors. I saw some tumors that would be giving me hell in about six years time. It was really weird to see that. I didn’t remember being really affected than but apparently I was. Tumors really stand out on little kids.

I was thinking to myself that this blog could use some sort of spark, something new and interesting for all the readers out there. I don’t know why I didn’t think of it earlier, but I’ve decided to ask a few of my friends with MHE if they would like to occasionally write for this blog. I thought it would be interesting to have more then one persons views, experiences, and feelings of MHE.

So far Nicole has been the only one to say she’ll give it a try, so I’d like to formally thank Nicole ahead of time for sharing her stories and opinions here. Although she informs me that she has no idea how to work this blogger thing and probably won’t update on a regular basis, her stories can still be a treat for not only the readers but for me as well.

I’m still awaiting reply from the other two girls.

Winter and I don’t get along, we really don’t. Winter is cold while I like to be warm, winter is full of hazards like ice and snow. Oh ya, did I mention winter is cold?

Ya I know, I live in Canada; I should be used to it, but I’m not. I hate it more and more with each passing year. I think snow falls are pretty only if I’m safe and warm inside my house. I’m sure many people are like that.

My bones also hate winter. Which is believable, seeing as everyones bones hate winter, but mine really hate winter. Just yesterday I was hanging out with my boyfriend and his friends and they wanted to go for a walk to get to my boyfriends work so he could pick up his tips, and then go to one of their houses. My boyfriend lives right smack dab in the middle of both destinations, and I had to walk all the way down to the restaurant with my boyfriend and one of his friends. But by the time we got back to my boyfriends house, my bones were killing me. My hip kept cracking from the cold and my ankles were sore. So we didn’t end up going to the other persons house.

I hate walking in huge groups, because I feel like I’m slowing them down. It also seemed like I was mad because I wasn’t talking; but I’m not much of a conversationalist when I’m freezing cold, aching, and trying to prevent snot from running down my face.

It took the rest of the night for my bones to thaw out, and then I woke up 2 times last night because my ankle had [very painfully] locked up. I hate it when my ankle locks up; its sort of like a cramp but not really because its more of the bones locking up then the muscle. It hurts just as much though. I think its because I have a tumour on my ankle thats gotten pretty big. It never used to lock up.

But today my ankle is sore still from locking up. So oh joy. I just know when I leave the warmth of our house to venture outside into the cold, it will lock up again. I have to run errands today at my co-op too; shopping for the clubnight and dance, so yet again I will be slowing people down.

I hate slowing people down.

You’ve gotta hate love the people who have absolutely nothing [medically] wrong with them medically and always fake that they have something [medically] wrong with them just to get attention that they see someone who does have a medical disorder getting. It’s pathetic and rather insulting, to me anyway. My friend Jodie was just telling me about this girl at her school who literally copied everything she went through today, right down to having a fake seizure. Whats wrong with people?

I know I would love to not get the attention I get from having a medical disability, and I’m sure Jodie feels the same. But why would you fake having serious medical problems just to get attention? I’ve personally never had anyone try to copy what I go through, unlike Jodie, but there was a girl at my school who acted like a twisted ankle deserved front page news, a cast signed by everyone, and flowers and other such get well soon gifts from people. She drove me insane sitting in the middle of Art class making sure everyone was looking at her before she popped down some iron pills and gravely informed us all that she had low iron and needed to take them, even though you’re supposed to take iron pills with meals, not during fourth period. After that she then proceeded to ask the teacher if she could go for a walk around the school because she was suffering from low iron – which she did just to get out of class. Nevermind that if you have low iron then you tend to be more tired and lazy, she used it as an excuse and made everyone pity her. At that same time, I was taking iron pills in the morning due to loosing a lot of blood during a surgery which made me low in iron as well. I was tired all the time and taking long walks around the school was far from my mind, all I wanted to do was sleep.

Some people, I tell ya, it sickens me. They have good, easy lives and don’t even know it. Instead they think they have it really, really bad and try to get pity from everyone they know. I don’t even think I have it bad at all, and I’m a little drama queen (for the most part anyway). I know there are people out there worse off then me, and I would never dream of saying “oh yeah, I have it so bad!” because I don’t.

Depression: an illness when the feelings of sadness, hopelessness, and despair persist and interfere with the ability to function.

When you have a medical disorder that causes you daily pain, you tend to feel a little frustrated, fed up and maybe even a little depressed. It’s natural to feel sadness and despair when you watch all of your siblings, friends and classmates doing things that you shouldn’t or can’t do; things you want to do but know that if you did you could cause your body a lot of harm.

Sometimes, the physical pain interferes with the daily ability to function probably; whether it be walking up and down stairs to get to classes or even getting out of bed. I’ve had my days where getting out of bed was insanely difficult, almost hopeless. But when and where do you draw the line between the physical stuff and the emotional stuff? How do you know when you’re depressed?

One of the several causes of depression is chronic pain, as I’ve mentioned before. Depression can go either way; it can be caused by chronic pain or it can cause pain. Stress is also a cause, as well as having attentional, learning, conduct, or anxiety disorders. If you’re confused about whether or not you are suffering from depression, click on this link. If you have a lot or all of those symptons, then you should talk to your doctor about it.

I know several of my MHE friends feel the same way I do about life. I deal with this because I have to, nobody else is going to deal with it for me. There are some days when I just want to crawl back into a ball and sleep once I’ve woken up. The things keeping me going are my family and friends, and knowing that things could be a lot worse. I honestly don’t know if I personally suffer from depression, I just try not to duel on the bad days and I try to focus on the good days, but I know a few of my friends are depressed, so I wanted to give them a little something to read up on.

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.