Hi and Hello!

It’s been¬†six whole years since I’ve been to this blog to update. I apologize. Life got super busy for me, but I’m coming back and hope to be posting here at least semi-regularly, with updates on my book! That’s right, I’m writing a book. A memoir, to be exact, about growing up with MHE! I hope you’ll read it!

A couple other exciting things that have happened in my six year absence that will surely be focal topics around here:

  • I am now married to a handsome man named Matt.
  • I am now a mother to two beautiful little boys, Nolan and Archer. Both of them inherited MHE from me (I will post more about that later).

Do you have any questions for me? Fire away! 

 

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Independent

I’m seriously liking living “on my own”. For the first time ever, I feel slightly independent. I rely on the public transit system to get to school each day, and it’s my responsibility to clean up after myself, cook, and get on the bus on time. I’m even doing my own laundry, with a little instruction from my landlord; but her washer/drier is completely different from mine at home!

I am going to hand my resume in to a local group home which is quite literally down the road from where I’m living. The money is apparently good, and even if it’s not the best it’s still a familiar place and it’s still money coming in. I can start saving!

Yep, I think living on my own agrees with me! I have a feeling college is going to be stressful, but I know that I’m going to thoroughly enjoy it. This weekend I’m staying here so I can hang out with a couple new friends that I have made and go to a PowWow the local native’s are having for everyone to get a glimpse of their culture. It should be a really rewarding, interesting experience.

Recently I switched from Community Development to Community Development with an Emphasis on Aboriginals. I had my first class yesterday and it was full of promise for the upcoming year. I like the sound of things we will be doing.

On a completely different note, my friend Mandy (who also has MHE) will get to meet JK Rowling in NYC this year. I’m so envious! If only I had entered the contest with her! Except I think it was only for people in the United States. Oh well. Have fun for me Mandy!

Sleepless

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.

College Life

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.

the moose

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!

The New Doctor

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!

Speak Up!

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.

Another Month Has Flown By

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.