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!

My job is stressing me out. It’s crunch time; only two more weeks left and the last week will be a 6 day camping trip. I’m cranky, I’m exhausted, and I’m not happy. I love my job, I just dislike the politics and drama. Planning events and recruiting volunteers is fun; I get paid to camp, how awesome is that? But there are people on my team who would like everything to be done their way, and that’s just not how a team works. There are people on my team who don’t listen to my opinions, my suggestions, my needs.

For instance, putting me on the wheelchair bus is a bad idea. I am physically unable to lift the wheelchair members without hurting myself or more importantly, them. If something bad happens during the seven hour long bus ride up to camp, I will not be of any help. I’m supposed to be the staff member on the bus. This does not make sense to me. I wouldn’t feel comfortable knowing my own physical limits.

I spoke to my boss, and he sees my point. Finally. I wouldn’t have gone to my boss had the person who made the bus assignments listened to me when I pointed that out. Instead, he argued with me saying nothing would happen and I would not have to lift a wheelchair member at all during the trip. However, he can’t grantee that, and technically the rule is when lifting someone in a wheelchair you must have a staff with you, so I couldn’t tell two volunteers to do it either. Because it isn’t safe. I know how to do wheelchair lifts, but I physically cannot. If someones safety wasn’t potentially at risk, I wouldn’t say a thing.

It’s irritating me how my medical disability is holding me back from so much. This is the field I wish to work in, yet I’m unable to do a wheelchair lift. I’m working on it, and training to do it in ways where I would not hurt myself at all. I’m not a very strong person, and my bones aren’t very strong either. I never understood that aspect about MHE; you have a lot of bones but their fragile, or at least mine are. That’s no fun. Where’s the use in that?

The important thing is that I am working on finding ways around my MHE. I now know my physical limits, and I won’t push myself to do something that could result in jeopardising the safety of someone else and myself. I’m not an idiot. I won’t allow that to happen. I’m not only speaking about the now, but also about in the future. I won’t do stupid things to satisfy co-workers. It just ain’t gonna happen. My word – when it comes to my physical limits and health – is law.

I wasn’t so smart before. I used to push myself to do things to satisfy other people. When I worked at Tim Hortons, I ended up hurting myself really badly several times trying to satisfy my bosses and co-workers. I couldn’t lift the cream bag to change it without hurting myself, but I knew my co-workers were sick of doing it for me. They didn’t know why they were doing it for me, they just thought I was lazy. So one day I did it myself. I ended up dropping it on the floor after hurting my wrist really badly. I also fractured my ankle at school. It was Track and Field day and the teachers were notified that I couldn’t participate in the event. They told me to volunteer at the Shot Put game and pick up the really heavy balls. I ended up fracturing my ankle in one of the holes that the really heavy ball left. All these things (and more) happened because I didn’t speak up.

So from now on I will.

So my high school graduation ceremony was last night. I have to say it went beautifully. It was really nerve racking coming outside to see several bleachers full of friends, family and teachers. I almost died. I was fully able to picture myself falling flat on my face. Luckily, I didn’t.

I was deeply embarrassed halfway through the award part of the ceremony because I realized I wasn’t going to get an award. The few that I thought I would get ended up going to other people. So I stopped listening to the awards, and then guess what? I was called up to accept the Heather Rebeka Lodge Award that is awarded to a graduate student who worked hard and will be attending college in the fall despite obstacles. The obstacles they were talking about was the two surgeries I had last year that put me behind my classmates. Had I not taken co-op, I would be short two credits and I would not have graduated. Thanks to co-op, I was able to earn 2 extra credits and graduate with my classmates. I was award $200 which I put in the bank today.

Unfortunately thanks to co-oping all day, I missed out on having a social life. Most of my classmates enjoyed their last year of high school by attending several parties, going to school functions and just enjoying the high school life. I missed out on that. I was busy working. I missed out on one of the classmates finding a mouse in their pants, I missed out on several awesome get-togethers. I didn’t go prom camping, and I didn’t go to any of the Blue Jays games the popular kids put together because I wasn’t sure if I would feel weird or not.

The class valedictorian made me think about all the stuff I missed out on by giving her beautiful speech. I now feel guilty for assuming I would have a horrible year way back in September, because I could have made it better. Instead of making time for my old friends, I accepted the fact that they had changed. Ya, maybe a couple of them changed for the worst but I still could have joined in on the antics every once in a while. I could have made the new people to my old circle of friends feel included, I should have made my own friendships with them instead of assuming I had been replaced in that circle of friends. I should have skipped more classes, laughed more, attended more parties, gone to more school dances, and enjoyed it while I still could.

I sat through the Graduating Class Slideshow a bunch of people put together and almost started to cry. I missed out on knowing a lot of people. I was only in the slideshow twice myself, and I could have been in there more. Had I given myself the chance to fit in. I suppose you could say that I decided I was above silly high school antics, and in believing so I missed out on what could have been a really fun time of my life.

But that chapter of my life is over now, I have accepted my diploma from high school and in the fall I will be attending college. I’ve got everything set up; the cheques in the mail to secure my spot in the Social Service Worker Program and my first and last months rent has been paid for my apartment. I’ll be attending a Welcome Day in late July, and I’ll bring in all the stuff I need to get set up with Disability Services.

The tuition payment was supposed to be due today, but yesterday my dad and I drove up the college to explain our situation. The money had not come in yet; we were still waiting for the government to release it. They understood, and have given me until Friday of next week. Luckily, the money came in yesterday evening and the college will definietly have it by next Friday. My mom is planning on running it up Tuesday (since Monday is a holiday).

So everyone, I am no longer a high school student.

I don’t know what it is about the summer, but I never seem to need to eat a lot during the day when its hot. I like eating smaller things throughout the day. Instead of bigger, heavier meals I feel like salads and fruit.

I have decided I am going to eat better and exercise some, because I am apparently very lazy. I suppose I could get myself in shape, but that will be hard since I seem to lack energy 99.9% of the time. I’m thinking maybe if I was in better shape I would have more energy? Or if I ate better? Who knows. I just want to have more energy and I want to try anything that could possibly work.

Maybe I’ll go for a walk after I write this post. I have to mail a letter to Mandy anyway, and I’m sick of being online. I’ve been online since I got home at like 4pm. Something is wrong with that picture, I know. I’ve been busy exploring my college website, busy trying to figure out how to use my student emailing account. On July 23rd I am going to the Welcome Day, and I’ll find out more about Disability Services. The letter finally came in the mail from my old doctor from Sick Kids regarding the documention on my disorder we asked for months ago. So I will finally get that business out of the way.

Wednesday I start working with a developmentally disabled boy. We are going to the mall and catching a movie. This summer I’m going to work with him and get him familiar with taking public buses, also I’m going to take him on a tour of the college he wants to go to. My sister works in the Student Services office and could probably help me out with that one.

And this Thursday is my high school graduation ceremony. A few hours of listening to other people accept awards and I can boogy on out of high school forever! I am thinking about attending the after party for a couple of hours with my boyfriend, just to say goodbye to the people I have gone to school with for the past 6 years.

I have this entire week off, and the Canada day weekend as well. There are some things I have to do, like buy a new bathing suit even though I’m broke. I can’t go to Wilderness Weekends without a bathing suit, especially if we are going to spend an entire day at the beach swimming. I suppose I don’t really need one, I could go into the water in shorts and a t-shirt, but I would rather have a bathing suit.

I also think I’m going to start walking more. Walking down the drive way, down the street, around the block. Its a lot of walking, I live out in the middle of no where.

I’m gonna start walking now, and maybe I can talk my parents into buying fresh fruit.

I hate those nights when you can’t sleep, even though you are exhausted. I can’t seem to get my brain to stop thinking so I can sleep, I’ve been thinking so much that I gave myself a headache. There is just so much going on right now, so many thoughts and worries and concerns.

One of my concerns is that MHE really is making me crazy. Maybe it isn’t the chronic pain, but maybe its the always feeling like your uncapable of doing more. You push and push your body until it breaks but it still doesn’t feel good enough because other people are doing more without straining themselves.

I have tried my hardest to not be lazy, even though my energy gets used up very easily. I drain energy fast, I am definitely not an Energizer Bunny. If I was a battery, I would be the cheap dollar store one that drained after 5 minutes of use. I am so sick of never having enough energy to do everything I want. I want to do everything they can. I want to be able to lift heavier things and work all day without being in so much pain and without being so exhausted.

How do you break out of this constant layer of self-doubt and judgement? I critize myself more then other people critize me, I know that…I just can’t stop it. I don’t know how.

I should think about planning another surgery; should think about writing down the aches and pains and telling the New Doctor about them. Maybe he could fix them so I have more energy and strength, but I doubt it. It seems like with every surgery and each passing year I loose more energy and strength, and I didn’t have a lot to begin with. I’m worried about my bones fusing, I don’t know what that would feel like and my left ankle has been locking up for the past year and a half now. I’m not sure why, and I’m worried it could be because of fusing.

I worry about a lot of things. I wish I could learn how to relax.

Have you ever had one of those weekends so full of ups and downs it felt like you were a part of a really bad soap opera that over dramatized everything? Ya. I just had one of those weekends.

Friday was a good day for me; it was my birthday, how could it have sucked? I spent it with my family and got cool presents. Saturday was a pretty decent day, I took the Non-Violent Crisis Intervention Course through work and learned a lot of valuable things. I also helped set up the dinning shelters for camp to see if we had all the pieces. Sunday was a completely different story. I was planning on going for the perfect birthday weekend where nothing goes wrong and you’re just generally happy to have reached the age of 18. I am still generally happy about being alive, but I’m completely bummed out at the same time.

Early on Sunday morning, Father’s Day, my beloved dog passed away. Shadow had been a part of our family for 8 years, and saying goodbye was so difficult. He was a major part of our lives, and I already miss every little thing about him. I miss him coming into the kitchen to bug me for a slice of cheese every time I opened the refrigerator, I miss him barking loudly every time I come home, I miss him sighing from boredom when my mom and I are on the computers instead of paying him attention, and I miss seeing him waiting at the top of the drive when we come home. That’s just a quick list of things I miss about him, the things I notice more now that he’s gone. The only good thing I have to say on that matter was that it was a quick death. I’m assuming his heart gave out as my Dad saw him in Kate’s room breathing rather heavily and tried to get him to come upstairs but he wouldn’t. Dad then went upstairs to put on a pot of coffee and by the time he came back down to check on Shadow, he had moved to the part of the hallway in front of my bedroom door and my parent’s bedroom door and died.

So Sunday really sucked for me. I was in bed completely out of sorts. I know he was a dog and to a lot of people who wouldn’t understand, there are worse things that could happen – and I am sure that’s true. But keep in mind that Shadow was a very important part of our family. He was one of us. I’m going to miss him a lot.

Monday afternoon I finally made my way down to my grandparents house. I was supposed to go on the Sunday but I didn’t feel up to it. Papa’s health seems ok; he’s progressing at the expected speed of someone who has just had triple bypass surgery. He seems depressed though, but I read online and have been told that its related to having heart surgery and it will pass when he starts feeling like his normal self. I agree with that. Papa has always been the kind of man who has to keep busy, or else he feels useless. Plus there isn’t a lot for him to do around the house.

Papa isn’t feeling up enough to coming to my Commencement on the 28th of June, as the car ride is a long one and he would have to sit outside for a couple hours – he could catch a chill. I don’t want him getting sick over seeing a silly ceremony that is very predictable anyway. He’s seen Shannon’s and Kate’s, he knows how it works. Besides, we will take lots of pictures and he will get to miss all the boring speeches! Lucky guy!

I start work tomorrow, I mean actual work, getting paid for the hours I put in. I got all of my co-op hours on Friday and sent in all of the co-op papers, so I’m now officially done with co-op. I’m an official employee, getting paid. We leave on Friday at 5pm for camp, and won’t get back until 3:30pm on Sunday. For a while, I was just going to get volunteer hours, but luckily my boss decided to put me on the payroll for that. Camp is going to be very hectic and stressful, and it will be good getting paid to sleep on a very hard ground and probably throw my body out of whack. It’s going to be interesting to see how my body reacts to sleeping in a tent, as I’ve never done it before. I’ll have to do it for 3 weekends in a row in July!

Well I’m off to read and get an early sleep, and perhaps think of some alibis for the Murder Mystery Club Night I’m helping run tomorrow.

P.S. I am a little worried that I lost all the readers I had before when I wasn’t posting a lot, so please if you are reading comment me so I know you’re still reading!

I am really sorry for the lack of updates as of lately! I just get so busy during my day, and I have honestly not been home lately. I also have trouble finding specific things related to my disorder to talk about…considering my every day life isn’t wrapped around my medical condition. For the most part anyway, I try not to let it control my life and dictate what I can and can’t do – but sometimes it does and then I just have to ignore it!

So much as happened, and I have a lot of updates to share with everyone. I shall have to resort to using bullets!

• June 1st was my prom; I have to admit it wasn’t as fun as I was hoping it would be. My legs were killing me from a SYG dance the night before and from the new shoes I was wearing. I did look very nice, if I say so myself.
• After prom I went to my boyfriend’s trailer with him and his family for the weekend. It was lovely and the weather was beautiful; we went swimming several times. I had far more fun there then I would have had at the camping trip my peers put together. I actually like my boyfriend and his family, so that’s probably why.
• The end of May/early June was a stressful, scary time. My Papa went to Kingston General Hospital to have Triple Bypass Surgery. He’s home now, and my mom is currently helping my grandma out. Papa seems to be doing very well – thank God – and I hope to visit him soon!
• Tomorrow if I work 8 hours then I will have completed my required co-op hours to graduate. I will have 660.57 hours. I plan on going in half an hour early too, just to boost the number up.
• Because I am finishing co-op earlier then to be expected, my boss is allowing me to take Monday and Tuesday off to visit my Papa at his home. He would also allow me to take the Wednesday off, but I promised a co-worker I would help him run a Murder Mystery club night on Wednesday. Thursday I am back at work only I will be getting paid for it! Which is a good thing, considering Thursday I will be doing a lot of work; Friday head out to a provincial park to camp for the weekend with 14 of our recreational members. Its going to be hectic!
• Because of my medical condition, I am not joining the other Summer Students when they go up to camp a day early to set up. Setting up tents and dinner shelters is too much for my body, so someone else is going up instead. My job will be to stay at the building and collect medication, take attendance when people get on the bus, and basically be in charge of people for the hour long bus ride. I’m positive I can do it, but I’m slightly nervous. It’s a lot of responsibility – especially meds! If I mess up on forms for meds, I will most likely get fired. But no worries! I won’t mess up!
• My work is offering really interesting courses such as Behaviour Management and Non-Violent Crisis Intervention – free of charge or completely cheap! I attended the Behaviour Management class today and learned a lot about PDD and the particular behaviours and how to stop outbursts from happening, it was awesome!

All those little updates aside, I have something that is burning on my mind and will surely result in lots of posts on this here blog. I’m having a slight conflict with one of the people I work with. I’m trying not to let that cloud my opinion of them, but the amount of “evidence” that is piling up that they just don’t like me is impossible to ignore. Obviously, when you feel as if your co-worker(s) don’t like you, your performance goes down hill. I’m not sure why, but it does. I’m hoping it will blow over and things will change, but I don’t know. I know I shouldn’t let office issues cloud my working ability, so I’m going to try not to. But I have a feeling its going to be an interesting summer.

If you’ve ever experienced pushing your body to its limits and not getting anything good out of it, you’ll understand this post. Since February I’ve worked my bony bum off at my co-op, because I knew all along that I would be applying for summer student and I wanted them to see how hard of a worker I am. Not to mention, I needed every hour to count so I could graduate this year.

But my body is tired and it feels like I’ve proven nothing. Yes, they appreciate all that I’ve done. Yes, they appreciate the fact that I’m in here every day while the other co-op student calls in sick 99.9% of the time. But it still doesn’t seem to be enough, because Greg keeps talking about the really awesome nursing students they’ve interviewed. I can’t compare to a nursing student, I’m only in high school. All I have to offer is my goals for the future, my ability to work hard and stay on task, and the fact that I’ve been here forever and know the members. Plus that I’m self driven. I can complete tasks on my own or in a group. But I’m also just in high school. They already have a high school student, and they like him a lot because he knows what he’s doing and they don’t have to train him. They would have to train me.

One of the reasons why I really want this job is because I won’t have to stand for long periods of time. I’m already doing all of the work the summer students would be doing and my body – for the most part – is handling it well. I’m tired because I am pushing myself to come in everyday, but I need to break my body in and get used to coming to work everyday.

Hopefully all this hard work will pay off. I should know by Friday.

Yesterday I went to a Youth Fair with my co-op employer, Greg, to recruit volunteers for Sunrise. We set up our board and pamphlets and waited to talk to whoever came up interested. The kids were from grade 7 up to grade 11, and again I was wowed about how inconsiderate and rude peoples kids are. For instance, this guy in about grade 8 or maybe 9 came up to our table to ask what this “Sunrise” thing was about. Greg told him Sunrise was a recreational group for the developmentally handicapped and all we required our volunteers to do was to come out and be friends with our members and basically treat them the same as they would their friends. We explained that Sunrise was created to give developmentally handicapped adults the same opportunities as anyone else has.

This kid was being rude the entire time, rolling his eyes and waiting impatiently for us to finish just so he could say “why would we want to do that, its not like they’d know any differently!” in a rude tone. Greg and I were stunned. For starters, they do know when someone is treating them differently, and they don’t like it. They do deserve the same opportunities as any other person out there, and to come up to us and to fart stuff out of their butts about our members not deserving the same opportunities as anyone else.

But he just shook his head and laughed and said “I don’t need this shit.” It irritated me to no end because we didn’t force this kid to come over and we certainly didn’t want to hear his ridiculous opinion about stuff he doesn’t know. How come kids today are so stunned? I get that not everyone can work with developmentally handicapped people, but to be that rude about it? Why? Why act like you’re better then someone when you really aren’t?

I’ve noticed that there are a couple people out there who act like they are better then anyone who has a medical problem or delay. It’s pathetic, because no one is better then anyone else in this world. Unless that person is scum and goes around talking about how developmentally handicapped people shouldn’t have the same opportunities as “regular” people.

On May 15th, I have an appointment in the hemophilia clinic for my “final visit before transfer”. I’ve mentioned earlier about my move from Sick Kids to an adult hospital, and how I’m nervous about it. I think at this present moment I’m more nervous about my blood clinic visit.

You see, the blood clinic at Sick Kids has always been, well, eager for my blood. It seemed like every time I had sugery, they’d be up visiting me every day trying to poke holes in my fingers and draw blood. I’m a veteran when it comes to blood work, but I still flat out refuse to have what they called “finger pricks”. My fingers are small, the needles are huge. I’d much rather them take blood from a different location, like my arm. Your fingers are more sensitive then your arm, and they bleed more. I don’t like blood very much, who does? I always felt sick when I watched the huge needle suck away blood and fill up the containers – which weren’t very small.

I know that blood work is very important after surgery; they need to do it to ensure that you didn’t loose to much blood and that your white blood cell count is still good and all that jazz, but I hated how they were always so eager. They would come in with huge smiles practically drooling and stare at my vains as if they were seeing a meal they’d like very much to eat…

 Ok, maybe I’m over reacting a bit here…but I can’t help it. The blood clinic has and probably always will creep me out. I’m hoping the blood clinic at the “adult” hospital won’t be so creepy and take my blood so eagerly.

I don’t think I will ever forget that “major” surgery I had on my hip; I lost a lot of blood and the blood clinic was in ever day practically begging me to take the blood transfusion they offered. The first time they were so excited, but they got really desperate after my parents firmly said no. That small percentage of a risk is too great for them, especially considering I wow the doctors with the things that happen to me – like that time they froze what they thought was my whole arm so I wouldn’t ache so much afterwards but the freezing completely skipped my shoulder where the majority of the surgery was and completely froze my hand, which only had a minor surgery. Talk about fun times.

Anyway, it turns out that I was able to solve that problem with Iron pills alone; so a transfusion was definitely not needed, and thankfully never received.

Clearly, you can tell that I’m ever so excited about this visit.