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.

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.

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.

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.

Very shortly I will be leaving for work…since there is a club night tonight I get to go in later. I was hoping to spend the morning hanging out with my boyfriend, but his dad needed him to help with moving an organ piano.

I’m hoping the club night is a success, it all depends on how good myself and the other summer student I am doing this can work together. I’m sure it will turn out fine though.

This weekend is going to be so busy for me. I’ve yet to test out the inflatable mattresses we have in the garage! I can’t sleep unless I’m comfortable, so getting comfortable on the solid ground is going to be a challenge! I hope our inflatable mattresses don’t have any holes in them, that would suck. I don’t think we have the time or money to go out and buy a new one.

Set up crew will leave for the campsite Friday morning, and I will stay behind to supervise the going ons on the bus. I will collect med forms and basically sign people in. Its a heavy responsibility because of the med forms aren’t collected or someone has forgotten very important medication, then I’ll most likely be to blame. But its ok, I can handle the heat! Med forms are pretty straight forward!

What I am worried about is the activities for this weekend. Since we (the summer students) got a rough draft of an activity plan finished, we haven’t really focused on the finer details. When I get to work today I’m going to look through the beach bins (bins we bring to the beach full of beach stuff) to see if we have any buckets for the sand castle building contest and the beach relay. I’ve also never been to a Wilderness Weekend so I’m not too sure how they work, I just hear little things from co-workers. I am new to Wilderness Weekends. Last year, I had that double whammy of surgeries and really couldn’t have gone, I would have been more of a burden then a help. The first year I started volunteering I didn’t even hear about Wilderness Weekends. They weren’t really…advertised. So it should be an adventure!

My to-do list is growing more each day, but I’m glad about it. For too long I had nothing good to do with my time and I was bored out of my mind! I’m the kind of person who can’t not do something. I used to love being alone because then I could do whatever I wanted – that usually consisted of going online or reading a really good book. I still like doing those things, but I dislike being alone. I’m a weirdo.

Any who, I don’t know if I’ll be able to update again until Monday after the camping trip (I’m sort of stressed for time) but my next update should be pretty interesting…what with it being about how my body likes camping and all that (I can predict where this is going.)

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.

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.

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.

Sometimes, I think of my MHE like a gift basket. Its a gift basket is a weird thing to compare my MHE too, but it works. You know those really pointless gift baskets you sometimes get at Christmas? And it has all those nasty foods and stuff that you would never eat or want? Well…my MHE is kind of like that. Its full of stuff I don’t want. Part of the “regular” package is extra bones, pain, surgeries, scars, nerve and muscle complications. Then you can have the “deluxe” package; which includes extras such as depression, immune disorders, arthritis in most joints, nerve damage, and more.

So far, I have the regular package and most of the stuff that comes in the deluxe package. Its frustrating because – like the gift basket – I don’t want it. It complicates things. It takes up time, and makes things difficult. There are more complications that can happen as you age with MHE, such as having your tibia and fibula fuse together. Even “regular” people age with difficulty, so I’m quite nervous about getting old.

I already feel old. I could barely do the regular walk today from my boyfriends house to Tim Hortons – and it was only about 15 minutes. Usually I can deal with that walk, as its not too far, but lately I’ve been finding it harder and harder. Speaking up has always been a problem from me; I find it difficult. I don’t want people to think that I’m lazy or a wuss.

Lately I’ve been thinking about growing old, and I don’t like the idea. I feel like I’ve already aged more then I should at 17 – I feel like an old lady! I’m going to soon need a walker to get around – and I won’t even be able to use “I just had a surgery” as an excuse!

I can just feel the panic attack coming on. I don’t know if I can deal with any more MHE related complications…