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!

This past weekend has been an eventful one for me. On Friday, I went to the staff appreciation dinner with my co-workers. Saturday was the volunteer appreciation I hosted at my house, and all morning I cleaned the entire house. I even washed the floors! The volunteer appreciation went well if I do say so myself, it was totally chill – which is what I aimed for. We had a paint balloon war out in my back yard and it was pretty funny; only it didn’t last nearly as long as I wanted it to.

The rest of the appreciation went swell too. People sort of split up halfway through it; some people went to the family room to play Guitar Hero 2 and some people went to the garage to play a game of pool, while some of us sat out at the fire out in my new stone fire pit. The only downer part was in the course of the appreciation while running from group to group I stubbed my toe on a billion different things. Now it hurts extremely bad and is very bruised and swollen. Ya, I know, the picture quality sucks but I blame my camera – it hates me.

I find it slightly amusing, however, that I have not even met my doctor yet for the first time and I’ve already got a list of complaints. It’s like; “Hello doctor! Nice meeting you. Uh, can you fix my toe now please?”

Ok so maybe I don’t have a list of complaints for him. My toe is only one thing but it still hurts a lot, and I’m worried I might have broken it. I know they can’t do a heck of a lot for a broken toe, but I’m supposed to be leaving for a week long camp on Friday! My toe can’t be broken for this! I have to run events, like soccer-baseball! And I can’t very well wear my super awesome super hero boots I found at Value Village! (They are completely awesome, they go up to my knees and are platforms; granted I wouldn’t normally be able to wear them for a solid day but I was planning on sucking it up for the sake of my costume!).

Anyways, I meet my new doctor tomorrow. I’m pretty nervous about it, as I’ll no longer be in the safe walls of a children’s hospital. Anything can happen at an adult hospital, right? I know for a fact the nurses won’t run down to the kitchen to steal me cans of mushroom soup when I crave it. Only Sick Kids nurses do that, and only because they liked me and found my craving for mushroom soup endearing. Who [normally] craves mushroom soup?

Truthfully, I am pretty nervous about the whole moving-to-an-adult-hospital-and-getting-a-new-doctor thing. Keep in mind, I’ve been going to Sick Kids since I was diagnosed, I’ve had the same doctor since I found out I had this disorder. It was easy for me to trust him because I was so little when he started operating on me, now I’m older and more alert about what’s going on. They can’t fool me into riding a tricycle into the operating room, and I’ll be wary of them. I suppose I can’t pass judgment until tomorrow though, when I actually meet the guy.

I will have to show him my toe though and see what he thinks of it. It’s pretty painful and nasty looking.

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.

I never thought I would make it to the final camping weekend. I was almost 99.9% sure I would die of exhaustion, stress, and anger before I saw today. Luckily I didn’t, I’m still alive and kicking. I don’t know if I will be after the weekend, ask me on Sunday.

Last weekend was absolutely horrible. It rained the entire day on Saturday, and my body ached so bad I couldn’t even move. I had to keep going into my tent and trying to stay out of the cold and rain and get warm. I think I pissed off my boss and co-workers but I really didn’t care, I could barely move. Kate says its my fault for taking on a job I “couldn’t handle”.

Anyways, I quit my second job; which was working with a boy who has a developmental delay. I believe I put too much on my plate and just wasn’t able to handle it. Thats alright though, I’ve lessened the load and now I shouldn’t be too stressed out!

In other news, Harry Potter 5 comes out tomorrow. I’m pumped but slightly depressed since I won’t get to get it until Monday since I am camping and since I have a college tour that day anyway.

For those of you who celebrated Canada’s Day, I want to know what you did. Consider this another “delurking” task; tell me what you did on July 1st. I was at my boyfriend’s trailer with him and his family. We watched fireworks in the huge baseball field and then we watched more on the beach. The fireworks weren’t really spectacular, but I enjoyed it none the less. The people who hosted the fireworks even gave out cake that tasted really good.

Tomorrow I am back at work, so things might get crazy around here for a bit – or rather, dull. We have Wilderness Weekends for the next three weekends in a row, so it’s going to be crazy planning and organizing this week. I am going to work really really hard this weekend, considering last weekends attempt at really hard working didn’t work out too well. People still made jokes about the lack of work I was doing. So this weekend I am going to push myself more. I know I probably shouldn’t, but I need to feel like I belong. I have to feel like I’m a part of the team and that me being there is just as important as any of the other summer students being there. I am going to get a good nights rest and be there [at work] early. Maybe I’ll even get there before everyone else. I’d love to beat them all in and be sitting at the desk, already belonging.

Truthfully, I am nervous about going back. Things have undoubtedly changed. What if there isn’t any room for my ideas? What if they respect me less because I wanted a vacation? Actually, I didn’t really want a vacation, I just really needed it.

Ah well. I suppose this is how it’s always going to be in the work force. I’ll try to keep updating though! Don’t forget to delurk yourself and tell me what you did for Canada’s Day!

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.

Today I booked an appointment with the Student Advisers of my college to be for a tour, seeing as I was late for the open house they had and didn’t really get a chance to explore the school. During this tour I realized just how big and wide-spread the college really is, although the Student Adviser assured me that my classes would be in the same general area.

I wasn’t on this tour alone though, so I couldn’t really voice many of my questions about disability services. I suppose I’ll have to contact the disabilities office and book a seperate appointment. I’m also beginning to think I should meet with my new doctor at the new hospital long before I start school, that way I won’t miss any classes. Catching up in college would be a lot more difficult then catching up in high school. I find it slightly depressing that I don’t get to have an OT in college, I’m used to mine speaking for me and making sure that I have what I need in order to excell in school. I’m going to have to speak for myself here, and its slightly scary. I’m looking forward to being more independant, but it’s nerve racking at the same time because I’m afraid of leaving out something important or not being able to voice my concerns or needs loud enough to be heard.

Despite having to speak for myself and make sure I have what I need, I’m looking forward to college. It’s a new and exciting experience. I’ll be on my own for the first time (and who knows, maybe even the last). Plus theres always the exciting High Speed Wireless Internet to look forward to!