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.

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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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The Future

February 3, 2008 at 3:23 am (blogging, myself & I, rambling, real life, resources, worries/concerns)

I have been thinking a lot about what I want to do with my life, and which direction I wish to take it in. I would honestly love to work in the social services field, but I’m not entirely sure that I’m cut out for that. I have never been able to separate work from all the other little categories of my life; I tend to bring it home with me. That can be very damaging when you are working in the social services field. Being a Child and Youth worker takes a certain kind of person who not only wants to help and is good at it, but one that can also separate it from their lives and not constantly think about their cases. I’m good for the first two, but I have yet to master the skill of leaving stuff at the office.

So now I am rethinking my life – which I really should have done before going to college. I was so sure that was what I wanted. Now I’m afraid to make the same mistake; be so sure of something only to find out it wasn’t what I wanted or expected. I’m making each decision by heavily weighing the pros and cons – and I’ve yet to come up with any ideas.

My only talents really are writing and helping people. I have never been wonderful in the maths, and thanks to my lovely medical condition, I can’t do all those physically demanding jobs like being a doctor or nurse. A lot of people want to write books, and unfortunately not everybody is successful. As my mom has always said, it’s a rather unstable future.

Now I would like to help people, travel, and write (not necessarily in that order). I have always wanted to travel all over the world, and write about my adventures, and helping people has always been something I enjoy doing.

Here are some careers I’ve been reconsidering:

  1. Journalism: I could travel to exotic locations and do a write up about it. Or I could do write ups about local restaurants and stuff. Mmm…food tester!
  2. Photographer: Photography is always something that has interested me; and I could possibly travel with that too.
  3. Child and Youth Work: Despite me being unsure if I could handle the pressure, I would certainly still love to help children/youth or even adults.

My friend Matt told me about this program called Katimavik; basically it is a program that runs for 9 or 8 months and participants live in three regions of Canada and do volunteer work. It’s an amazing learning experience and sounds like an adventure; to both travel and help people…wow. And it could quite possibly give me time to decide what I want to do, since I’m really no closer to deciding what I want.

So I applied for an application, and I will be talking to my parents. I really don’t want to go to school for anything unless I am positive it is what I want.

I have a question for everyone: how did you choose the career path you’re on now? How do you know when it’s right?

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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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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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Oh how time flies

December 31, 2007 at 3:12 am (blogging, rambling, real life, worries/concerns)

I can’t believe how quickly yet another month has flown by. I am sorry I missed the opportunity to wish everybody a very Merry Christmas – but better late then never, hmm? I hope you all had a wonderful Christmas! I know I did.

Now…there have been some changes in my spur of the moment plans. I don’t think I will be moving in with my cousin right now. Things have come up that make being further away from home a little difficult…so I think I’ll stay here….for the time being anyway.

Of course this means that I cannot work…for the time being anyway. Both my parents have fulltime jobs, and I don’t have a license so I can’t drive myself anywhere. It will be hard trying to find a job with no wheels, especially since I live out in the middle of nowhere.

But this means that I could work on my writing. I have an amazing idea for a novel, and I’m doing the background research and character development now. I’m also looking into getting it either self published or at least read by a publishing company. How cool is that? It’s always been a dream of mine to write books! Maybe I can get started on it!

And this also gives me time to think about other program options at other colleges…and maybe even throw in a surgery or something. Why not eh? If I have the time I should make use of 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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