On Monday I met with my new doctor at Mt. Sinai hospital. He seemed friendly enough, made a couple of jokes and had us all smiling (my mom and my boyfriend came with me). He said I probably would not need any surgeries if I was finished growing.

I found that hard to believe. I’m sure I’ll have more surgeries within my adult life, there are a couple of tumors I have that cause me discomfort that I would like to have removed. Nobody likes being uncomfortable all the time, even if those tumors cause no other problems. I wanted to fix my fingers so I could wear rings, and my ankle so I didn’t smash it off of everything (it sticks out a lot, almost more then my ears!).

However I am afraid to come to this new doctor with my problems. According to his statistics I won’t need any surgeries, and I don’t want to appear vain or anything. But I will have to get those bumps that are uncomfortable removed!

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 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.

I have been busy again. I know, thats no excuse. I should make time for the things I promised to do. This blog was one of them. I told myself I would update it at least once a week, but lately things have been busy and crazy and I just haven’t even had a chance to think about what I would tell people reading this blog. Not to mention, my browser has been giving me a lot of trouble lately. It rarely loads things, and on those rare times it does its done in a painfully slow fashion that leaves me clenching my teeth and counting down the days until I move up North. I will finally have a broadband connection! I am excited! I will be able to sign up for Youtube and watch the videos!

Anyway, I have been working really hard. The other University Students have started, and I find myself worker harder then before to not be outshined. One of the University Students has been a volunteer at Sunrise 9 years now, and she seems to have all the answers and good ideas. For the most part, we get along great…but sometimes she gets on my nerves by acting a little superior. For instance, one of our job requirements is to go to local high schools to recruit volunteers. During one of the trips I was checking my phone to see what time it was because she wanted to know. I had to exit the text message my sister had sent me saying she would pick me up in order to do so, and she said “I would rather you didn’t do that while we are supposed to be working.” I asked simply told her I was checking the time and couldn’t do so if the “text message from Kate” screen was up, and she backed off a bit.

I honestly don’t think I could ever be in a drama free environment. My feathers are always being ruffled about something – I’m a sensitive person and I sometimes let things get to me when they shouldn’t. So I try not to approach things in that way.

Other then the occasional feather ruffle, work has been pretty good. We’ve gotten a lot accomplished. There is a lot of work that has to be done; such as taking all 50 odd bins down and cleaning out whats inside, setting up the tents to see if they work, recruiting volunteers and running the orientation this Tuesday, running a Fun Friday day program, and planning all the little details of camp.

I’m also hoping to take on another job. A woman from a town close to mine is looking for a worker for her son. From what I hear, he has slight brain damage from the car accident he was in when he was 6. He is 15 now and needs a worker 3 nights a week for 3 hours, I think it pays 15 bucks an hour. So that’s an extra $135 in my pocket. The only catch is that she wants someone who has a license and access to a car. My boss sent her an email saying I would be great for the job, but that I didn’t have a G2 or car. I suppose I’ll hear back on Monday with what she had to say to that.

My high school prom is this Friday. I pick up my dress tomorrow to see if the alternations we had made fit properly. My boyfriend, Neil, has already gotten his suit and I picked out a couple of ties that may or may not match my dress. I am supposed to pick up my prom tickets on Tuesday after my ultrasound appointment.

Oh yes, I forgot that I haven’t mentioned that. Well since my stomach has been acting up lately – on and off apparently – I finally decided to go to the doctors. He recommended taking some kind of anti acid and going to have an ultrasound done. But since I pretty much know whats wrong, I’ve stopped taking the questionable medicine that made me pass out at work almost. Remember now, I hate medication that makes me feel different in a bad way, so I will refuse to take it. I don’t care if he said I had to try it for however many days.

Well I wish I could continue updating but I had no idea so much has happened since the 12 of May, and I must continue tomorrow as I really need some sleep. I promise to give my few readers out there more!

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!

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.

With my thoughts so caught up in college and the prospect of getting a place of my own (which, by the way, has officially happened; my parents paid first and last months rent to my “landlords” just this Friday and I will move in early September) I forgot to mention the little gift my dad got me…. well I mentioned it on my other blog but I forgot to mention it here. Its such a pain trying to divide both “actual life” and “medical life” into two blogs, but I’m trying to do it.

Anyway, my dad got me a spiffy Q-Ray bracelet. He told me it was for being accepted in to college, and because he had been meaning to buy me one for quite some time, seeing as it’s supposed to balance negitive and positive energy forces in your body to acheive a state of “Chi”, which will allow your body to perform to its fullest potential. I know a lot of people who wear them because of arthritis pain and they say it really helps. I’ve been wearing it solidly now since Easter Sunday, and I have noticed some slight differences; I do feel more balanced. I have “heavy duty pain” usually (meaning its more painful then arthritis) so I didn’t and won’t expect this cute Q-Ray bracelet to help with that but its still good feeling balanced. I’ve tripped over my feet less in the past few weeks and I’ve been less stressed out.

Now being less stressed out could just be because things are starting to fall in place for me, like I have an interview on Monday for Summer Student. Several people have told me not to worry, and that SYG would be foolish to not hire me. After all, I could start in May and work for co-op hours instead of money, so they would save 2 months of paying someone else. Plus I’ve been a volunteer at SYG for almost 3 years now, and I know what I’m doing. I know the members, and I know the protocol; to a certain extent anyway. Hopefully I get that job though, as I won’t have to stand the entire time and it pays more then an average fast food joint.

Last night I couldn’t sleep, I was so worried about what I was supposed to do about the whole college business. If something ways heavily on my mind, then the problem has to be solved soon or the longer I have to wait and think about it, the more anxious I get.

My dad was really hesitant on me even considering moving out for college. He was being really stubborn and kept saying that I’m his little girl and he doesn’t want to think of me going away to college. I don’t want to think of myself going away to college, but the fact of the matter is that I am. Living near the campus would relieve so much physical stress off me, and it will teach me how to budget and be more independent.

I think we’ve worn him down though, he knows that I will be able to excel better if I’m living near campus. I emailed the Housing Officer (a lady who helps you if you want to look for housing off campus) and she told me about how her daughters best friends parents were a really nice family and they had a basement apartment that they wanted to rent out to two non-smoking females, and that it would be the perfect location for me because its only a 15 minute walk to the campus and the bus stop is four doors down! So I called the lady and my parents and I are going to take a look at the apartment tomorrow evening. I’m hoping my dad won’t be too stubborn about out, and I’m really hoping that he doesn’t take too long to decide. I don’t want to loose the place to someone else because he took to long debating pros and cons.

I just finished writing the personal circumstance letter that I’m supposed to attach to my bursary request when I sent it in. I’m really hoping that I’ll get the bursary, because it would help us out a lot. I’ve always felt like a financial burden on my parents because unlike my sisters, I couldn’t work part time so my parents have had to pay for everything I need (such as clothes and shoes) or want (like entertainment). I also discovered that a lot of my medical expenses are not covered by OHIP. After surgeries, any physical aid (like a walker, wheelchair, or crutches) and pain medications come out of their pockets. Thats a lot of years of a lot of surgeries and a lot of money coming out of their pockets.

Last year, when my sister Kate was writing her letter for her bursary, she told me that you’re supposed to make it seem like you have it really rough and you can’t really afford college. I was just being truthful in mine. I tried to explain things clearly but I’m afraid that I might have sounded as if I was trying to milk it. The fact of the matter is that we do need the help that a bursary would offer.

If I get the Summer Student job, I’d work the entire summer (thats 11 weeks) 9-5pm, 7 days a week making roughly $10.50 (thats what my friend made last year when she had the job). In a single day, I should make about $84 (if my calculations are correct). $84 x 5 days a week is $420.00, and $420.00 x 11 weeks of summer is roughly $4620.00, give or take around a hundred dollars for deductions. If I lived near campus, I would have enough money to pay for my own groceries and my phone bill for 8 months, and that would leave me with about 500 or so dollars to spend on extra things – so mostly monthly bus tickets. I would be able to help my parents out in some way, so lets really hope I get the Summer Student job…