I don’t have classes until 1pm, but I woke up after getting a phone call from my boyfriend (he just wanted to say hi before he went to school) and now I can’t get back to sleep. I’m restless. I suppose it doesn’t help that there is background noise – my landlord runs a day care during the day – normally I’m not affected by it, but today I am.

Luckily for the most part I’ve been getting a good night’s sleep each night. My bed is comfortable, possibly more comfortable then the one at home for some reason. I don’t know why, considering my mattress at home has a pillow top (which is a really comfy extra piece on top) and this bed doesn’t (and if it does it isn’t as thick). Oh well, I’m not one to complain if comfortable!

My computer chair is far from comfortable though. It’s making my upper legs and bum ache. I’m feeling that bone under my left leg coming in again, which sucks because when I had it removed last time I lost a lot of blood. I don’t want to loose anymore, and it’s in such an awkward position that it made sitting and lying down painful (since it’s on the back).

I can remember my doctor’s words when I first met him. “Oh you are done growing, so you probably won’t need anymore surgeries!” Pfff. That’s just wishful thinking on both sides. I would like to be able to say I don’t need anymore surgeries, but I hate discomfort and being in more pain then I usually am, so I would take the surgery to lessen that pain and find a little bit more comfort.

Sometimes I fear that I complain too much. When I was at Sick Kids, I worried that my doctor thought of me as a whiner, not brave at all. I’m not claiming to be brave or anything, but I definitely don’t want to be a complainer in people’s eyes. So for the most part, I clench my teeth and bare it instead of making a doctors appointment to deal with my thousands of complaints and concerns. My new doctor didn’t seem to keen on talking about future possibilities for surgeries, so it’s going to be harder with him.

Plus it’ll be harder with myself. Trying to convince myself to actually book a surgery, that is. New Doctor is, well, new to me. He’s never preformed a surgery on me or even ordered x-rays. Granted, I’ve only had one visit, but still. What’s new is scary and unfamiliar.

I also don’t want to slow myself down in college. I made a slight pack with myself that I would hold off on surgeries and even complaining until after I graduated from my two year program. It can’t be that hard, I just hope my body will cooperate. Sometimes it doesn’t, but I really don’t want to miss any time. I’m trying to go for “perfect attendance”.

My MHE has always been an awkward subject with new people I meet too. They tend to ask a question that would spark the need to explain my medical disability, such as “why do you walk that way?”. Once I accidentally roped myself into having to explain when the girl asked me if I received any bursaries yet. Without thinking, I told her that one I got at commencement… the Heather Rebeka Lodge award, which was awarded to me for overcoming challenges and completing my high school education and going on to attend college. She wanted to know what challenges I overcame, so I told her about being short 2 credits due to circumstances and working extremely hard in my final year to be able to graduate with my classmates. Again, she wanted to know what circumstances they were, and again I told her about my two surgeries months after each other.

Anyways, I’m still making slow progress being 100% comfortable and sure of myself. I don’t know if it’s just my personality that causes me to be this insecure, but it’s slightly annoying.

I have to go finish the summary for chapter one now, and I suppose I should have did the summary for chapter two as well in Introduction to Psychology.

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.

My first ever Wilderness Weekend was this weekend. My head is still pounding. Needless to say, I am glad its over. It didn’t go bad presay, I mean for the members at least. They seemed to have fun, so did everyone else. It was me who didn’t have a lot of fun.

It wasn’t the sleeping on the ground, that wasn’t too bad actually. Dad picked me up a rather expensive self inflatable mattress that allowed me to get a couple hours of sleep. I was still pretty worn out though – its hard work. I honestly wasn’t expecting it to be such long, difficult days. Feeding 30 people and making sure they are all happy is hard, especially when two board members are there judging us.

Also, other volunteers don’t listen to me. Nobody really does. I got a lot of questions as to why I’m a Summer Student. One of the volunteers (who happens to be dating one of my co-workers) even made a casual “joke” about the difference between “working and getting paid.” It seems like the entire weekend was a joke on my behalf. Jessica isn’t good at this, or she’s not doing that.

What really irritates me is the fact that we are understanding of our members needs and limits, but not volunteers. I was a volunteer, and I am now a staff. People still don’t understand that I have a medical condition that limits my mobility and affects my strength. It may appear that I am being lazy, but I’m not. I work as hard as my body will let me, and as much as I would hate to admit it, its not as hard as other people can work. I find people got annoyed with me because I couldn’t help load the van and I wasn’t much help with taking down the dining shelter. They should know. They should understand. But they don’t.

If you have MHE, then you know that if you have it “bad enough”, then working is hard. As I’ve previously mentioned, MHE affects your mobility and limits your strength, so working is difficult. I work at a place were I’m on my feet running around all day long. It’s recreational stuff, programming and what not. It’s hard, especially when you have volunteers who are lazy and don’t want to help out even though they can. It’s harder still when nobody listens to you because they don’t hold a lot of respect for you because they think you too are lazy and not working hard enough.

I don’t know how much longer I can take being dictated to and bossed around by people who are at the same level of position as I am. I don’t give a pooh about them “being there longer” or “being older” then I am. Sunrise is supposed to be a happy place where nobody judges. Volunteers do nothing but judge. Actually, so do most co-workers and board members.

Three more camping weekends, then one more week long camping trip.

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.

Most girls love shoes; they love to have several different pairs to go with every outfit they own. Thanks to my MHE and high arched foot, I can’t buy all the cute shoes I see and would love to wear because I can’t actually wear them. Well I could, but the result would be me in a lot of pain and that is just not a result I feel like dealing with at this present moment.

Anyway, I find that in order to make up for not indulging myself with new shoes every time I see something I like, I indulge myself with new purses and accessories. If you have ugly, orthopedic shoes like I do then wearing cool necklaces and carrying around cute handbags is one way to try and balance it out a little.

I know shoes are really irrelevant in the huge scheme of things, a lot of people are too busy to pay attention to what kind of shoes you wear. But you still see your shoes. I hate looking down at my feet when my sneakers are on because running shoes are so boring. They are all I have worn since I have had to wear shoes. For 18 years I’ve only ever really owned ugly but some what comfortable running shoes.

Anyway, I think it would be really awesome if shoe companies started making cute shoes for people with medical problems. I know they already have orthopedic shoes but lets face it, they are really ugly and not stylish at all! You can really only put orthopedic inserts in running shoes, and the “dress” shoes they have available aren’t directed at my generation. So I think it would be really awesome if they started to actually make cute heels and “flats” (or as I would call them; not so flats) for people with feet problems. It would make me unbelievably happy, so if any of you know anybody who makes shoes for a living, run that idea by them; orthopedic shoes that are hot, and geared towards my generation.

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.

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.