These Shoes

July 21, 2008 at 3:31 pm (blogging, myself & I, opinions, rambling, real life, reflecting)

I know it’s been forever since I last updated, and I apologize. It’s summer time, and I tend to get lost in this season of freedom and relaxation. I have not been around to update you all on how my first doctors appointment went, and for this I am deeply sorry. I know you have been awaiting a response, and next time I fall off the face of the earth please feel free to email me and yell at me.

Anyways, the appointment ended up with me waiting for a surgery date – which I’m still waiting for. They are operating on my left ankle and left ring finger. Since having the appointment, other issues and concerns have come up; like the tumour on the underside of my left hip. It’s getting larger and causing more discomfort and pain. I’ve called my doctor and left a message about possibly including that in the operation, but unfortunately the lady behind the desk told me I would have to have an appointment with him so he could check it out. He can’t just add things to his list because he has other patients. It makes sense, I guess. So ya, I’m just waiting on a surgery date.

Other than the wait, not much has happened in my medical life. So I can get on to the “dirty” part of this post.

I received an email that someone had commented a post in my old MHE blog Bumpy Bones. Here is the comment they left (that I haven’t approved because I no longer log in to Bumpy Bones):

Author : anonymus
E-mail : nzundel@weber.edu
URL :
Comment:
-As a survivor of cancer, mulitiple surgeries, scars and lifetime effects of REAL medical conditions. . .All I can say is- get over yourself- Life is too short to get that worked up over a miniscule “reminder” that you are human- and life happens- Everyone had little odd things about them- and if attention to them brings you that much distress- you should be seeing a shrink=- not a surgeon! My praises to the surgeon that had enough perspective to tell you the truth in todays world of scalpel happy nuts.

Personally, I thought this to be very harsh so I decided to email this person a reply, only apparently the email they gave doesn’t exist, so I decided to post it here in case they still happen to be reading. Here is my reply:

Dear “Anonymous”;
In regards to the comment you left on my Bumpy Bones Website, I would just like to take the time to say that while I do respect you for being a cancer survivor, but would like to remind you that there are other people in the world who go through medical conditions every day for all of their lives. My MHE is something that I have to live with every day of my life, and there is no beating it. Before you wrote that comment, you should have looked into my medical condition; all of my bone tumours are inactive cancer, they can become active at any given moment. Consider I have these growths ALL OVER MY BODY, that makes my risk higher than people who don’t have this disorder. All of my scars have a great risk of getting skin cancer, which is why I wanted to get the bigger ones removed. I did NOT want my scars removed for purely cosmetic reasons, which is why I took offence to the doctors words. I merely wanted them removed to lessen the risk of cancer and because a lot of those scars cause pain.
My medical conditions are just as REAL as yours were, and I find it extremely rude of you to accuse me of other wise. You of all people should realize that you can NEVER see how hard a person has it or doesn’t have it until you’ve walked a mile in their shoes. You haven’t walked a mile in mind, so please keep your petty comments to yourself. Yes, I do have some body issues but I do not need a shrink to tell me that, I’m fully aware it could be worse and I don’t sulk about my medical issues. I live with them them. I battle the depression that walks hand in hand with having a chronic illness.
I hope you feel good about yourself for this comment, I hope you got out all your angst in this comment.
Truthfully, I was and am upset about this anonymous person’s comment. I know I shouldn’t let one person’s opinion bother me, but it hurts that most people think that just because your disorder/illness doesn’t have a gigantic charity or a ribbon, it makes it less real than say cancer. My MHE may not have a gigantic, world known charity to raise awareness and money for research, and nor does it have a ribbon (at least as far as I know), but that doesn’t mean my medical condition is any less real than anyone else’s. It’s chronic, it causes a lot of pain and other conditions, and its a part of my life. No, it does not define me, but it is a part of me.
So, anonymous commenter…I hope you read my response to your comment and I hope in the future you think twice before saying something like that to someone else.
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Differences

June 5, 2008 at 10:22 pm (blogging, myself & I, opinions, rambling, real life)

I had a conversation today with someone that sort of hurt my feelings/got me thinking. They asked why I hadn’t found a job yet, and I explained that I stopped looking because I’ll be having a surgery soon and I think it’s pointless to start a job if I’m just going to have to take a leave of absence/quit it for the surgery.

They thought that I should look anyway, because I could get a couple weeks in at the new job. I still think it would be rude to get a job, tell them I’m unable to work because I’ll be having a surgery, and then have them have to hire someone else. That’s if they hire me in the first place. Most places won’t hire you if they know you won’t be able to work solidly because it’s too much of a hassle. When my sister was looking for a job she had to tell every potential employer that she was getting married and going on a honeymoon for a couple of weeks. The places didn’t hire her because what’s the point in hiring someone who can’t work?

But still, this person hurt my feelings. They said that another person had been chatting with them about my job situation, and that they agree that I should get a job and work anyway. I was miffed at this point, and told them to walk a day in my shoes and come back with what they discovered. Of course, this angered them and the conversation ended. I was trying to get them to see it from my point of view; places don’t hire you unless they know you’ll be able to work the required term. Meaning if I was seeking summer full time employment, they would only hire me if I could work the entire summer full time. If I needed time off for a surgery, they wouldn’t hire me because they would just need to hire someone else to take over.

I find it difficult to explain myself to family and friends because I always feel like I’m just complaining by stating my opinion on things. Truthfully, I have been looking for a job and sending out resumes like crazy. Job Bank has been the top visited site by me in the last month. A lot of jobs require you to have transportation and I license – which I lack. This makes getting a job even more difficult. I was hoping the local retail store would hire me, but I haven’t heard back from them. I haven’t had much experience – or any actually – in retail. I have 2 years worth of experience in costumer service, but none in retail. This sort of puts a damper on applying at retail stores, who prefer it if you have retail experience.

So I’m stressed out about money, and about school. I still don’t have any clue what I’m going to do. I’m waiting to hear back about Office Admin, and I think the Journalism program I applied for and got accepted into has revoked their offer as I never replied back to them. Gah!

Anyways, I’m looking forward to next year. My pen pal, Mandy, and I are planning on actually getting together. I want to go visit her in her home town, because it’s apparently really nice there. I haven’t seen her since grade 7, so it would be nice to see her again.

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On The Hunt – Again

June 3, 2008 at 4:31 am (blogging, myself & I, opinions, rambling, real life, reflecting, worries/concerns)

So during my last post – X-Rays and E-mails – I meant to talk about my doctors appointment and a really nice email I had received about my blog, however I got distracted by visitors and forget to mention the really nice email that really did make my day! In this email, I was told that my blog was very informative and that the person learned a lot about MHE just by reading it (among other things). This honestly perked me up a lot. It’s no secret that I haven’t exactly been feeling 100% myself. It surprised me just how much words like that could bring up my spirit. I tend to look at my own blog a wee bit more critically than I should, but its nice to know that I’m helping educate people 🙂

Today is my boyfriend’s birthday, so I’ll be busy all day hanging out with him. I’m going to cook him dinner and bake him a cake. I’m hoping to make his birthday special because his past birthday’s haven’t exactly been special. So today it will be all about him 🙂

My doctors office called me today with the appointment for the pre-op stuff. I have to fill out a bunch of forms and meet with the anesthesiologist. Matt is planning on coming with me. It’s very important to me that whoever I’m with isn’t terrified or intimidated by doctors appointments, and Matt definitely isn’t. He’s definitely a keeper; you can tell by the way he wants to know what we’re up against. Not to mention, in times of crisis he doesn’t run away. He’s there for me, giving the comfort of hugs and wise words. He’s also there for my family, which I have never seen in a guy I’ve dated before. Anyways, that doctors appointment is going to take place on June 16th – the day after my birthday. I guess I won’t be enjoying turning 19 on Sunday night. Heh. Oh well, I have the rest of my life to go to bars!

I also have to really get started on job hunting. I put in an application to a local retail store at the pathetically small mall in town, but haven’t heard back from them yet. Granted, I handed in my resume on the Friday. I’m keeping my fingers crossed that I get the job. I really need the money. Too bad now a days all the desk jobs require a degree of some sort of administrative program in college 😦 this makes getting a job very difficult!

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Back from hiding

March 6, 2008 at 6:34 pm (blogging, myself & I, opinions, rambling, real life, reflecting)

It’s shameful, the amount of time it’s been since I last updated this blog…but I really didn’t have anything new to say. No recent hospital trips, no recent major dramatic changes in my “medical” life. I’m still jobless; finding work has been a lot more of a challenge then I expected, and now it’s pointless because in May I will be working at the recreational group for the developmentally handicapped. No point in getting a job for just two months or so, now is there?

There has been a lot of changes in my life recently I guess. I’ve been keeping busy hanging out with my friends and my older sister, Shannon. Two weekends ago was her Jack and Jill, and it went spectacularly! Next on the to do list is the bridal shower: which is next weekend, on the 22nd. Granny is going to teach us how to make fancy sandwiches and throw an elegant party.

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Now I spoke of changes: a couple of them are rather insignificant. For instance, I gave myself a haircut and got my lip pierced (excuse the horrible picture, but I don’t feel like taking another one…heh). I like the lip piercing; it was my treat to myself on Valentine’s Day, since I knew I wouldn’t be getting anything from anybody. Why not? The bangs were just a day of boredom…and I sort of regret them because they get in my eyes.

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Now the most recent change in my life is Matt. I meet him nearly a month ago at a party at my older sister’s house. He is a really sweet guy, and we definitely have a connection. It’s weird, but the good kind of weird. The wow I’m really excited to see where this will go kind of weird. He’s very much suited to everything that I need and we share the same views on a lot of things.

So those are the changes in my life, and here is what still hasn’t changed: I still am confused about the future. I’ve been accepted to both the Child and Youth worker program and the Journalism and Print program. I have until May to decide.

On the one hand, I love writing. It’s been my passion since I was very very small. But then, Journalism isn’t exactly a concrete career. And I do love working with people, so I know that I would be good at Child and Youth work.

Sigh. I don’t have a lot of time to decide either. In the end, I’ll probably end up going with Child and Youth work because it is stable.

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Regrets

January 28, 2008 at 3:33 pm (blogging, myself & I, opinions, rambling, real life, reflecting, these scars, worries/concerns)

When you have a chronic pain disorder you unfortunately tend to miss out on a lot. I was excused from Gym class at a very young age, so I never had to do the beep test or climb ropes (not that they climb ropes in Gym class – I wouldn’t know for sure, but I think that is only in movies). My parents also sheltered me from a lot of the more dangerous activities, such as ice skating (hockey was definitely out), horse back riding, water skiing, snowboarding and skiing, etc etc. The only sport I have ever really played was baseball, and even then I would get so tired and fed up with the fact that my energy was low and my legs were sore that I would sit down in the outfield and play in the sand.

Missing out on contact sports was all for a good reason though. My body isn’t built the same way that everyone else’s body is built. My knees and ankles aren’t in-line, and I do have like a kazillion more bones then most people and my doctors were never quite sure what a break would do to. They didn’t know how I would heal from it, and therefore they advised me to stay away from anything even remotely dangerous.

Ever since I was a little girl, I have always wanted to go horse back riding. I wanted to take lessons and go to the week long camps they had for riders. A week of riding a horse on a trail sounded perfect to me. But horse back riding takes a lot of leg work that I just didn’t and don’t have. My parents were afraid that I would fall off and hurt myself, so I never did get to take those lessons.

I can remember clearly watching my older sisters learning how to water ski up at the cottage and feeling envious because I wasn’t aloud to try it. Even then, I knew that it wouldn’t exactly be the best idea. Sure, I could do it – I am completely aware that I am capable of doing anything I set my mind to – but I would surely suffer and most definitely get hurt.

I was also envious when my sisters all went snowboarding and skiing together. It looked like such fun! I know that it is practically a death wish for me to attempt it, but I still always have wanted too.

As I think about all the stuff that I have held back on doing because of my MHE, I feel remorse and sadness. I’m worried that when I am an old lady I’ll look back and not reach integrity in the Integrity vs Despair stage of Erikson’s theory. I would like to try all those things, but I know that it isn’t safe for me to do so…I could very well end up in a wheelchair. That would seriously tick my sister Shannon off, who is getting married in April.

I am not angry about any of it, I’m just trying to figure out a way that I can get around the MHE and actually do these things safely without harming myself badly. If anybody has any ideas, then feel free to suggest them!

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Adjusting

January 11, 2008 at 8:08 pm (blogging, myself & I, opinions, rambling, real life, worries/concerns)

I realize that I have been abandoning this blog indirectly; and I am sorry. I definitely am going to make more time for it; as I should. Before I was really busy with work and school; and now that I’m living back at home with the dialup connection, my patience can only go so far.

What’s new with me? Well…everything and nothing at the same time. I woke up today feeling not so great – my legs are killing me. I wanted to go back to bed. Luckily, I didn’t have to be anywhere important.

In a matter of time though, I will be able to ignore the pain. When something is constant for me; I can adjust my pain tolerance levels, that way it doesn’t bother me as much. I don’t take any kinds of drugs for my pains because most of the over the counter stuff doesn’t work and I hate relying on heavier drugs to ease pain. I find adjusting to it is far better for me – mentally anyway. I suppose it isn’t always the best idea…back in grade eight I attempted to adjust to some serious pain in my leg. The tumour was cutting of the nerves in my legs, and because I waited so long to speak up about it I had lost a lot of movement in my legs. Luckily my nerves bounced back and I’m ok.

Other then winter aches and pains; nothing has really changed. I am not working or going to school at the moment; but I am looking for a job. I’m considering doing some online writing and making money that way for a bit. This way I can stay at home and relax.

I am thinking about contacting my doctor and seeing if I can book in a surgery. I have 5 months to kill, so why not have a surgery and have some of the problem spots taken care of while I wait? In May I’ll probably start working at the recreational group again, so I want to be in my best shape. I don’t want to spend the weekend in a tent in pain if I can avoid it.

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I feel strongly about this – so should you.

December 21, 2007 at 5:48 pm (bad things, blogging, doctors, for a cause, opinions, rambling, real life, reflecting, resources, worries/concerns)

I have been thinking about my cousin Karen’s situation with the only two pediatric cardiologists at her son’s hospital both leaving for Winnipeg in June. Her son (my nine year old cousin) Dylan had Kawasaki’s Disease almost 8 years ago and has some heart complications. He goes for yearly checkups to make sure that everything is still good. His case is not as dire as some of the other children at that hospital; the ones who make frequent visits and practically live there and count on the support of the pediatric cardiologists.

Personally, I think that the hospital should have recruited new pediatric cardiologists before its current ones made plans to take jobs in Winnipeg. What about all the children and families counting on them? Yes, I know, there are other hospitals (like my old Sick Kids Hospital in Toronto) but as Karen expresses in her post regarding the matter, trips that long from London would put a lot of strain on a family and a child suffering from major heart problems.

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Our healthcare system definitely needs to step up. In Canada, we have a lot of “free” coverage (which we actually pay for through taxes) and for the most part it’s really good, but then we get told that it is impossible to switch family doctors if you aren’t happy because there is simply not enough family doctors available. Why is there not enough family doctors available? If that is an issue, how come the government is not stepping up to solve the problem by hiring more doctors?

Personally, I do not like our family doctor. Nobody in my family does. We would rather go into a walk in clinic then book an appointment with him because he barely helps us. He shrugs off all of our health concerns and takes the easy way out for every question or concern that we have. So yes, we would love to switch family doctors — if there were any available. The only way to get a new doctor is to move to a new location, and even then it’s hard.

There are a lot of loopholes in our health care system that really need to be addressed. As taxpayers, we shouldn’t be allowing this issues of not having enough doctors to reoccur. We should be working towards solving the issue, instead of letting families go without doctors or having them travel long distances to see specialists.

What do you think?

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Of Heat Pads and Flannel PJs

December 18, 2007 at 11:12 pm (blogging, myself & I, opinions, rambling, real life, working)

Whenever winter comes, icy pain follows. Each year is a struggle to keep pushing forward through the knee high drifts of snow. Continuing on with my daily life is actually a lot harder then I let on…because I hate feeling weak and vulnerable. Sometimes though, I wish I was a bear so I could sleep through winter in a nice, warm den surrounded by food. Hey, don’t we all? For those of you who don’t have the pleasure of living in either Canada or the upper states, then you don’t know just how bad snow sucks. Sure, it’s gorgeous. Sure, winter activities are fun – like sledding and skiing and snowmobiling – but I pay the price of moving 10x slower than I normally do.

In my attempts to keep warm, I surround myself with heat pads, warm blankets and flannel PJ’s. I like to hide under my blankets with a good book, or sit in front of a fire (which I would do more often if I had a fireplace). But the second I have to go outside to actually get somewhere to actually do something, well…all those attempts just flush down the toilet and I’m suddenly freezing cold and very sore.

But weather complaints aside, my weekend has been going ok – except for the fact that I may have re-cracked a couple more discs in my back. Yup. Thank you heavy lifting at work. Love it. Only 5 more shifts of work to go before I’m finished and able to move to my cousin’s place.

…guess I should start packing eh?

Well I’m off to hide under my covers again…and maybe start packing. Maybe.

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Fresh like Spring

December 10, 2007 at 4:12 pm (blogging, myself & I, opinions, pictures & videos, rambling, real life)

Lately I have been so wrapped up in life and all of the going ons. Winter is always the hardest session on a person like me; and getting up in the morning is a struggle normally. It’s an extra struggle with the added emotional problems of loosing a friend and the other millions of things that have happened to me.

But I can honestly say now that I am no longer pining over my ex-boyfriend, Neil. In fact I am very much over him. I thank him for opening my eyes to the real person he was. Unfortunately; I only tend to see the good in people. This is bad for me because I often get hurt because I refuse to see the truth. The truth about Neil is that he was only concerned about himself. In the end, it was all about him and what he wanted and what made him happy.

I find it slightly amusing that I would think one moment to never get over him; that my life could not go on without him in it. But I was deeply surprised to find that my life did indeed go on. I started to smile more because I realized that I wasn’t happy with him anyway. When my sister, Shannon, told me that I was lucky that I would get to experience that “new relationship” feeling, I didn’t believe her. I didn’t think I could ever move on. But she was right, and move on I did.

My plan was to be single for a while…but that didn’t last. I didn’t indeed to start dating so quickly; I honestly did want to play the field for a bit and just focus on myself. Then I started talking to Blake. I went to high school with him, and he’s a pretty good guy. We talked for hours on the phone, and when we finally hung out and he asked me out I found no reason to say no. I can still be myself if I’m dating someone; I can still work on all the stuff I wanted to work on if I’m in a relationship. I’ve learned a lesson from my last relationship; and thats to never put myself and my wants on the side burner to please someone else. I will do what I want to do, when I want to do it (within reason of course).

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So from now on I will do what I fell is necessary for my own happiness. Whatever makes me happy, I’ll do it. I will put myself first – not because I am selfish, but because I don’t do so often enough. I know my sisters (if they read this) would find that difficult to believe but it is true; I often put my own feelings, thoughts, and desires aside to please other people. I often go out of my way to make those around me happy, even when I’m not feeling happy.

If I want to cry, I will cry. If I want to skip class and sleep in, I will skip class and sleep in.

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Venting

November 17, 2007 at 2:00 pm (bad things, blogging, for a cause, helpful tips, opinions, rambling, real life, reflecting)

I find it extremely ridiculous that you need a license for everything but having kids. Even if you wanted to adopt a dog from the pound, they would have to check you out to see if you could handle it. How come it isn’t like that when it comes to having kids? Yes I know, you can’t prevent scum from giving birth, but what about doing follow ups to make sure the baby is ok? Hmm? Did the government ever think of that?

It absolutely disgusts me that there are parents out there who “don’t want to handle” their children with disabilities. They ship them off to live in group homes and never visit even though they live quite close. Then there are the people out their who are sorry excuses for parents. One child at one of the group homes was a perfectly “normal” child before her parents cracked her head off the side of the tub when she was two and set her on the bed for hours before deciding to take her to the hospital. Now she can’t walk or talk. It wouldn’t have been this bad if a) her parents had never cracked her head off the tub in the first place and b) if they had taken her to the hospital immediately.

Babies have no perfection grantee. If you don’t think you would be able to love your child, disability and all, before you have it; don’t get pregnant. And if you do happen to get pregnant and give birth to a child with developmental or physical disabilities, the least you could do is give it up for adoption so the child has  a chance of finding a loving home, not just a group home. We love our kids at the group home, but it isn’t the same thing as having parents and siblings.

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