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.

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 have stumbled across another blog, MY GIRL; a blog written by a mother for her daughter with MHE. This girl, named Daryl, is only going into grade eight and has already faced a lot of pretty heavy things. In October of 2006, she was hit by truck while crossing the road. On top of that, she just had surgery. Go send her some love. Take it from me, hearing messages from friends – or even kind words from strangers – after a surgery helps. Anita and Daryl are pretty new to the blogging world, so show them a warm welcome and show them how embarcing our online communties can be.

Finding people online blogging about the same thing as I do is always such a pleasure. It’s amazing having someone to relate to, to give advice to and receive advice from. It’s rather freshing. Truthfully, I sometimes feel so lonely and cut off from the world.

My feelings on MHE go either way; some days I embrace being different, other days I hate it and all I want is to fit into society’s idea of “normal”. I don’t want to have to think about doctor appointments, worry about troublesome bones, and feel tired all the time. I do have a message for every single person with MHE or any other kind of disorder, and that is this;

Some days we need to break down, just to pick ourselves up again. It’s good to cry and get out all that frustration and anger. Keeping it bottled up inside will eventually lead to worser problems. If you feel like your standing on the edge of a cliff with nobody there beside you, talk to someone. Vent a little. Buy a journal or diary, or even start a blog. It helps. It helps to cry, it helps to laugh. Accept who you are and accept the fact that nobody is perfect, we all have our problems in life and we’re all [truthfully] a little crazy. 

I know it’s harder said then done. I’m the sort of person to give out really good advice and when the time comes, not follow it. I will know what I should do but be unable to for some reason. I try though, and that’s the truth. I’ll be trying for the rest of my life, but thats ok. I know that there are good and bad things in everybody’s lives!

So Daryl, I hope you are recovering fast from the surgery you had on July 12th. I hope all went well. I know sometimes MHE can be rough on you, especially in high school – when it feels like everything is rough and totally unfair. But stick in there!

I apologize for not updating this blog in almost a month, I promise I will start posting more things after summer. I’ve been quite busy with work, and a number of things have happened since my last post.

• Clearly, I made it through the rest of the camping weekends. The last weekend was by far my favourite; it went swell and I had a lot of fun. I was able to relate more to my co-workers and let loose a little and relax (for the most part, it’s in my nature to stress myself out).
• On August 17th in the evening I will be moving most of my possessions to the apartment. On September 3rd I will be moving myself into the apartment, along with a weeks worth of food.
• The Family Night for our members and their families went swell! The turn out was wonderful and we even left with some extra money! A couple of people wanted to see two of the board members dunked in the dunk tank, and they paid $100! I chatted with a bunch of families and generally had a good time, although I was exhausted by the end of the night and had quite the headache thanks to the loud music and all the conversation!
• I was going to model. My sister, Kate, found a modeling agency called C&A Talent Agency and had her photo shoot a couple weeks ago. One of the agents convinced me I should model too; she said that my medical disability would not affect my turn over of jobs. I was to have my first photo shoot on August 20th, after my doctors appointment. However, I recently changed my mind. Modeling is not and has never been my thing. I can’t see myself doing it, especially now. I’m low on money and I will be moving away so I will undoubtedly miss auditions due to distance.
• I’ve decided on my camp costume. This years theme is Superheros, and I’m going to be The Green Countenance; my made up heroine who fights evil. I haven’t decided on her superpower yet, I’ll figure that out when I have the time. Elektra and for one day, Sailor Mars. The other female summer students are also being Sailor Moon people, so it should be mildly entertaining.
• Eclipse by Stephenie Meyer has been ordered for me by my lovely cousin, Karen! I recommend her other two books, Twilight and New Moon, to anybody who enjoys reading! Stephenie Meyer is by far one of my favourite authors.
• I read and finished Harry Potter and the Deathly Hallows by J.K. Rowling within two days of receiving it. It was amazing! I loved it! Now I’m depressed though, as it was the end of the Harry Potter series! Now what will I wait for eagerly each year? The crappy movies? Ok the movies aren’t that bad but I like the books way more!
• As I briefly mentioned above, August 20th I have an appointment with my new doctor. I’m nervous about meeting him, but it has to be done. Especially before school starts!
• I met with a college counselor and was able to set up a couple of much needed things to make my days go smoother; I will have a note-taker so I don’t need to take my own notes (writing for long periods of time hurts me) and I will have extended time on my exams if need be. Since it’s college, they don’t care if you leave early, so long as you do so discreetly.

There are only three more weeks of summer! The last week of August I will be away for the week long camp, and then on the 1st of September I have to go to Kings Cross Station to catch the Hogwarts Express my grandparent’s house for a family party, then I will move on the 3rd. It’s going to be a very busy and hectic time for me! Luckily I have the essentials set up; I have most of the kitchen supplies I need, all my bedroom things (except for the mattress topper which I’ll be picking up sometime this week) and my phone line is set up to be activated on September 3rd. The major things have been dealt with, so I’m not too anxious about it. I do have to get my bus pass though before the 4th – when I start my classes.