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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Back to Square One

June 5, 2008 at 3:08 am (blogging, myself & I, rambling, real life, reflecting, worries/concerns)

Now originally I had a lot to discuss in this post, however this page has literally taken 10 minutes to load and my back is already killing me. I don’t think I can make it as long as I had intended to, so we have dialup to thank for that! One day I will get high speed, one day. I don’t understand why they don’t just make high speed for rural areas in Canada. I know Bell has it available for the States. How hard is it to make it available for rural areas in Canada if it’s already available in the rural areas of the States?

Anyways, I’m rambling. I tend to do that when I’m sore…so yes, I ramble a lot. But anywho, I’m back to square one with the whole educational pursuit. Originally I had accepted the offer into the local community college for the Child and Youth Worker program. However I recently realized that although I would make a good, attentive Child and Youth Worker, I don’t have that mental strength that is required when being a Child and Youth Worker to put a line between work and home. When working with troubled children and youth, there is a risk that you might not always be able to help someone. Or their cases and situations are far too horrible. I definitely am not the kind of person who can leave that sort of thing in the office, I would surely bring everything home with me and that would definitely reek havoc on my family life and even mental health.

So now what? Well I’ve always wanted to do Journalism. It’s no surprise that I’m deeply passionate about writing (or at least I hope it’s no surprise!) and everything about the Journalism program appealed to me. Everything. There wasn’t one thing that I didn’t like! My dream job has always been to be a well known and well published writer, and I have several plot books and started novels to prove it!

Unfortunately, Journalism is now wait-listed. I’m now on the wait-list, and the Admissions Officer assured me that it had only recently been wait-listed, which means that there should only be a small handful of people on the list.

If I don’t get in to Journalism in September, then I do have a backup. I’ve applied for the February start of Office Administration, the same course that my sister Kate took. That job definitely leads to other branches that I could go in to, and there is money there. Although it wouldn’t be the job of my dreams it would still be something I wouldn’t despise doing.

So now all I can do is wait, and kick myself for being so indecisive and not knowing what I want and who I was earlier. I could have already accepted the Journalism offer and not be on the wait-list. Now I just have to wait and see, and keep my fingers crossed.

I’m still jobless; and haven’t even gotten a call back for any of the resumes I sent out 😦 it definitely kicks ya in the ego. I used to think I had an impressive resume! Now I guess it turns out I don’t really 😦

And in unrelated news, Matt’s birthday was yesterday and he said he had a blast. His mom took us both out for lunch at Kelsey’s, and it was pretty good. He loved his shoes that I bought him (and refuses them to wear them since they have more white than his last pair) and the little birthday dinner/cake party we throw for him also made his day. He got two cakes!! Yum. Lucky boy! Now my birthday is next; 11 more days! Then I will be 19! I’m looking forward to that, and to my weekend in London with my cousins and Matt. That should be fun too!

Unfortunately my back is aching something fierce so I’m going to go to bed early tonight since I left the really awesome back stuff Gordon gave me at Matt’s house 😦 I wanted Matt and Colleen to try it, because it definitely helped my muscles relax. I forget what it’s called; it’s sort of like Rub A535, but better…way better.

Hopefully the back pain medication my mom found will work tonight so I can get some sleep!

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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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Another Chance

April 23, 2008 at 4:19 am (blogging, myself & I, rambling, real life, reflecting, worries/concerns)

I finally called my new doctor and booked an appointment for May 27th. I figured since he hadn’t made the initiative to set up another checkup appointment when I saw him for the first time in August last year, I might as well do it. He had probably long ago forgotten about me.

With MHE, it’s important to keep having yearly check ups to keep an eye on everything since sometimes the tumors can become cancerous, which is why even after you have finished growing your doctors want you to continue to have yearly checkups.

I have a list of demands to be meet this time around, and hopefully I’ll be able to get something out of this new doctor…since when I met him last year he seemed very nonchalant. Anyways, here goes the list:

  • I want to get my hips checked out since they keep locking/poping/dislocating or something, and it’s quite painful. I want to see if the joints are wearing out or something, and if there is anything to do to prevent that from happening.
  • I want him to check out my ankles; as they too lock up a lot and I’m worried they might be starting to fuse.
  • I want to discuss possibly resetting my ankles. They aren’t in alignment with my knees and I once had an OT warn me that if I didn’t get that fixed, my feet and ankles would collapse. That doesn’t sound like fun to me.

The reason why I usually hold back on talking to anybody about my aches and pains really is because I don’t want to sound like a complainer, because that’s not what I’m intending to do. But I am starting to realize that the longer I keep quiet about things, the worse it ends up being for me in the end…like in grade 8 when I didn’t tell anybody about the tumor in my right leg that was causing me a lot of pain. It ended up cutting off the nerves and I almost loss the use of that leg. Things like that happen to me with silence, so I don’t want to be quiet anymore.

I’ve had some doctors act as if when I told them what wasn’t right that I was simply complaining, so next time this happens I will tell them off. Not rudely or anything, but firmly…should it not be my right to get the medical attention I feel I need in order to make things easier? I think that if my ankles and hips were all fixed, I’d enjoy walking more. I could get more active…maybe start horse back riding or hiking or something.

I want to be more active. I’m sick of discreetly babying myself by hiding behind the “I’m too lazy to go with you guys for that walk” excuse when really I just know that I’ll end up paying for it later. I’m not a lazy person, I just don’t have the energy to deal with more pain that a simple 15 minute walk can bring.

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It’s Been a While

April 15, 2008 at 6:42 pm (blogging, myself & I, rambling, real life, reflecting, story telling, worries/concerns)

I know, I know…I’ve been missing in action for another month. I apologize for that, I just got caught up in life and attempted to hang out more with the people in my life instead of hiding out back home. WordPress has been insanely slow too, so whenever I have a quick minute to update, I end up not being able to because the pages take so long to loud. Luckily today, I’m not doing anything until 6pm (I finally start Drivers Ed today!).

So a whole whack load of stuff has happened since I last updated. My oldest sister, Shannon, got married this Saturday. The wedding ceremony was beautiful. She looked absolutely stunning in her wedding gown; all the little girls were convinced she was a fairy princess!

I had a lot of fun being a bridesmaid, although my heels did kill my feet within 20 minutes of putting them on. Such is life though, heels kill everyone’s feet, just mine more so. Matt helped film the wedding, and got hilarious footage of one of my dad’s friends, Brian, and I swing dancing. Brian is a pretty big guy, so it really was hilarious to watch!

Anyways, it was an awesome, fun night. I’m still paying for it today though, and for Friday night’s affairs. All of the bridesmaids, my mom, and one of Shannon’s friends from England spent Friday night at Shannon’s. We made the seating arrangements for the reception and then goofed off. While bringing air mattresses downstairs for our sleepover party, we all thought it would be an awesome idea to go down the stairs on the air mattress. I went by myself, and being so light I caught a lot of air and landed hard on my tailbone. Now, sitting down, lying down, and walking kills. I think I may have bruised it or something, it’s definitely swollen. Well, that’s my own fault I suppose!

I called my doctor today, the new one. I didn’t get anybody, so I left a message asking to book a checkup appointment sometime in the near future. I left my name and number, and I’m hoping they’ll call me back. I still don’t know if I like this doctor. He was very nonchalant about every concern I had, and we waited such a long time just to have all my concerns and questions brushed away.

I’m going to give him one more chance though, and if I still dislike how he handles things (or rather, doesn’t handle things) then I am going to call my old doctor and see if he can get me in with someone better. I want a doctor who is going to actually take my concerns into consideration and DO something about my aches and pains, not brush off everything.

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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.

niice.jpg

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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What’s wrong with that girl’s arm?

January 14, 2008 at 8:36 pm (blogging, pictures & videos, rambling, real life, reflecting, story telling, these scars)

 

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When you first saw this picture, what did you think? That the people in it are all having fun? Or do you zero in on one detail that isn’t exactly…normal? Did you focus on that girl’s arm and wonder what the hell happened to it? If so, why did you see that and only that?

That girl in the picture is me, this past weekend at my friends house. We were all having a blast and honestly I didn’t even feel uncomfortable wearing the tube top I was wearing. Then my friend put the pictures up on Facebook, and people I didn’t even know started commenting asking “what’s wrong with that girl’s arm?” as if it was the most important thing ever.

I’m sure these people meant no harm and they were simply curious, but sometimes curiousity can come off as rude and out of line. Leaving comments like that on a picture about someone will single them out and make them feel like a freak, like I feel right now. I’m just wondering why it’s so important…why whenever something isn’t normal about someone, everyone else rushes to point it out.

I’ve faced this kind of thing ever since I can remember; people asking what’s wrong with a certain part of my body that isn’t like them. Kids will be kids, I understand that, but I think by now people should know what tact is. One would think that young adults would think before they said something.

I honestly don’t think it’s anybody’s business why my arm is “different” and I find it rude when someone I don’t even know asks me whats wrong with me. I don’t mind when it’s a friend or someone well on the way to being a friend, but a complete stranger has no right to demand answers of me. My scars are an indepth story that I dislike talking about unless I know the person, it makes me uncomfortable. My medical history is not something I wish to talk about to complete strangers, and I hate feeling obligated to answer someone when they ask.

If I have kids, I’ll make sure to teach them that it’s rude to ask strangers personal questions – even if it’s about a scar they got. Contrary to popular belief, it’s not a conversation starter – it’s a conversation killer. It’s not a really good feeling when you dress up and do your hair and makeup and the first thing people notice about you is not that you look nice, but that your arm has a gigantic, ugly scar on 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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A Constant Ache

December 10, 2007 at 4:29 am (bad things, blogging, family, myself & I, pictures & videos, real life, reflecting)

Brad’s visitation and funeral were both beautiful. Hard, but beautiful. They played his favourite music at the visitation, and at the end of his funeral they played Shadow of the Day by Linkin Park.

I don’t want to describe the ceremony; because it will make me cry all over again. All I can say is that it was beautiful…everything they said about him…the songs and prayers that were sung and said…beautiful. His time came too soon, and I hope I never have to go to another funeral of a loved one again.

I will remember Brad, and I will not forget anytime soon just how much pain it causes your family and friends when death happens. Especially this kind of death; a death that could have been avoided.

To any of my readers out there thinking about suicide; please don’t. Don’t for yourself, and don’t for your family. The pain is gut sharp and will always be there. A constant ache.

I have that scar on my knee from Brad chasing me up the escalator…and its one scar I hope I will always have.

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