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.


In a Fight

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.

Energy – or lack of.

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.

As Long As A Can Remember – by Nicole from the Bumpy Bone Club

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.

Something New

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.

Locked Down

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.

Its Funny

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.