Avoiding Bloody Situations

July 25, 2008 at 2:43 am (blogging, myself & I, rambling, real life, story telling, worries/concerns) ()

My appointment yesterday with the hematology department at the hospital went well. They didn’t even have to prick me! Basically, they just asked me a bunch of questions and introduced themselves, since they would be administering the medicine that I take before each and every surgery to avoid bleeding issues. My first ever surgery didn’t go as my doctors had anticipated, and I started bleeding from the bone of the surgery site. They had to cut me open again to drain the bleeding, and before I was able to go home they had to stitch me back up.

They never could find a reason for my bones bleeding. Numerous tests showed that I didn’t have any of the major common bleeding disorders, so they assumed it was a result of my MHE and as a precaution I would be administered DDAVP before each surgery to avoid “bloody situations”.

My new “blood team” suggested I take a trip to another town and hospital for them to do a bunch of other tests to see if they can actually diagnose my bleeding problem – which, as of right now, is referred to as my bleeding problem. The head of the hematology department said that she would probably find what causes my bleeding problem because they actually have a very good, huge blood lab. So I’m thinking I might do that, just because it would probably be a good thing to know. Or interesting to find out, at least.

After we met with the “blood team”, we headed over to my hospital (which is actually across the street) to see if we could meet with my doctor (whom we shall refer to as Dr. Wonder), or at least his secretary. But I guess that his secretary was out for lunch or something. In any case, I didn’t get to meet with him – or anybody really. We had my handicapped parking forms with us so he could fill out the information to renew it since it expires on the 31st, but I guess I have to wait for my surgery for that.

It sort of frustrates me that I’ve yet to actually meet with Dr. Wonder about this whole surgery business. I mean, I met him once. I’ve spoken with him once. The appointment I had a couple months ago was with one of his teammates. I was sort of put out that Dr. Wonder didn’t even come in to talk to me about the surgery, since, well, he’s going to be the one operating on me. Did I mention it’s my first surgery with this hospital and with this team? Excuse me if I’m feeling a tad bit nervous about it, and truthfully I’m missing my childhood team. Course they’ve been with me from the get go and my old doctors bedside manor was beyond amazing, he was definitely a rare doctor.

I don’t yet have an opinion about Dr. Wonder. I mean I hear he’s the best in the area, and my old doctor really wouldn’t have referred me to anyone less than that…but it would be nice to have an actual conversation with the guy before I go under the knife, ya know? And I was really hoping I could talk to him about adding that one bone growth on my left hip into the mix…

Today I actually went to get an ultrasound and x-ray of that bone growth. I was hoping that if I could get the ball rolling, Dr. Wonder might be able to add that to the surgery list after seeing the results [if it causes alarm that is]. But actually, this is one of the more painful bone growths at this time (along with the ankle bone growth they are already planning on removing). I guess it’s just causing me a lot of pain because it’s in the most inconvenient of places and it makes sitting and laying down on my left side and back more difficult, uncomfortable, and painful than it should be.

I’ll try calling the office on Monday again.

“Authors” Note: I apologize for not giving out much information and therefore making this post sound a little bit on the boring side but I’m not comfortable with giving out location/name information. I hope you all understand!

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Lost Beauty

May 13, 2008 at 3:35 pm (bad things, blogging, myself & I, rambling, real life, story telling, the past, worries/concerns)

A single rose, wilting with death,
Once was beautiful,
With bright red petals, standing tall for all to see.
Now it wilts, the life gone, the beauty gone.
No one stops to admire the rose now,
No one wants to give it to their loved one now.
It’s an ugly dead thing, to be thrown out.
It has no significant value anymore.
One looking at it now would not have known,
That once, this rose caught the attention of many.
This symbol of love, the chosen flower of Valentine’s Day,
Now rotting away slowly in it’s vase.

I wrote this poem December 8th, 2004 for a school project – that’s like 4 years ago. I know it’s not very good or anything, but I like it. I’ve never really been a poet, any poems that I have written over the past years have either been for school or to help me over come things. I can’t find any of my other poems I’ve written, and I only found this one because I was cleaning my room and found the assignment it was for. For some reason, I kept this grade 10 assignment around and finding it today, I thought it would be interesting to share.

Only a couple more weeks to my [somewhat dreaded] doctor’s appointment. In the mean time I’m still job hunting and now I’m in the process of getting a car (and finishing my drivers ed in cars). The recreation group has unfortunately screwed me over, or rather G.A – the old Program Director – has after leaving suddenly and basically telling me to “stop talking to him” when I sent him an email asking what was going on. See I thought we were friends, so I was worried about one of my friends when they abruptly left their job at a critical time. Whatever though. Unfortunately this means that I now don’t have any letters of recommendation, and I also have to re-do the summer student interview. So a new job I am searching for! It’ll probably end up being a crappy fast food, retail or other such costumer service job…not at all what I wanted to do this summer, but I’ll take the paychecks.

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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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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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Work and School

November 25, 2007 at 6:08 am (blogging, helpful tips, myself & I, rambling, real life, story telling)

I realize that I have neglected to update on my life at school and work since the whole breakup ordeal (which, by the way, I am over as my exboyfriend has shown his true personality colours and they weren’t so pretty).

Work is going good…sort of. Since I started, I had developed a small crush on one of the guys that I work with. He is in the same program as me and actually quite adorable. However, I have recently decided that I don’t have a crush on him. Yes, I find him attractive, but his personality is not all that great. He’s a bit of an arrogant jerk, to say the least, and he gets on my nerves very easily. I dislike people who get on my nerves.

Anyways, my non-crush aside, working has been interesting. I was bit for the first time ever last week, and it hurt a lot. My own fault; I was brushing one of the guys’ teeth and decided that I would be able to clean them better if I parted his lips more. Um, bad idea. Thanks tips. So it was numb and bruised for quite some time; it’s actually still bruised but it is no longer numb. Then today I got pinched.

Oh the rewards! I love it though. I’ve grown attached to all of the guys, even the one that bit me and the one that pinched me. I’ll be sad when I have to say goodbye in April (I am leaving to go work for the recreational group as I can’t afford summer rent on the paycheck I am making now).

But thanks to this group home job, I feel a lot stronger. I feel better about myself because I feel a lot stronger. I’m going to start going to a gym to get in better shape, and I’ll do all those physio exercises I was instructed to do forever ago but never did do. I got busy…what can I say? Although I definitely DO recommend physio to people who just had surgery; and don’t skip out on it like I do. I have a lot more problems now because I didn’t listen.

School is…oh wow. I can’t even think of a word to describe school; probably because it is so late early. I have been putting off a lot of projects to the last moment. Not such a good idea, but it’s difficult for me to focus on them what with the recent events (that I’m now over…except for being mad about). I am so sick of group work, I could rip my hair out and cry. Actually I might still do that, thanks to one of my groups in one of my classes.

We have a presentation this Wednesday and I’m not prepared. Why? Because one of the people in my group decided that we should over complicate a simple presentation on aboriginal traditional medicine by dividing it up into millions of categories and each of us presenting one of them. Ya. I haven’t been able to find a whole heck of a lot on aboriginal ways of dealing with chronic pain through traditional medicines (that was the topic that was “suggested” to me). Not to mention, I truly don’t believe we they should be making it that complicated. The class won’t follow. Our information will be all over the place and screwy. But do people listen to me? Nope. They all think it’s a wonderful idea.

Whatever. I’m so stressed out about school thanks to group work that I am beginning to not care. Finials are in two weeks. Ya, another amazing thing to look forward too.

Anyways, that is how work and school are going. I’m still trucking though, and that is the important thing!

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Every Stitch Has a Story

November 22, 2007 at 5:12 am (bad things, blogging, myself & I, pictures & videos, real life, reflecting, story telling)

When I look in the mirror, I see a person covered in scars. They vary in size, shape, and colour even. Some are huge, red and ugly, while others have paid their dues and are less noticeable and pale pink.

But those kazillion stitches have a story. They all represent a time in my life and obstacles that I have overcome.

I am not just refering to the physical scars I have; even though I do have quite a lot of those. These physical scars leave emotional scars that only I know are there. They too, will heal over time.

a tattoo

My heart, much like my body, has several stitches piecing it together. There have been things in my life that have added to a tear in my heart, which I immediately stitched back up again. It’s not good to let open wounds bleed, or so they say.

So the event of this breakup has tore my heart again, but I shall stitch it together. And it will represent yet another story of my past, and one day…it won’t hurt so much. It only hurts now because it is fresh, so each movement pulls at the stitches and reminds me just how much it hurts.

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I am a Person First.

November 5, 2007 at 6:57 pm (blogging, for a cause, helpful tips, myself & I, opinions, rambling, real life, reflecting, resources, story telling, worries/concerns)

We are all guilty of stereotyping someone based on how they dress, look, or act. We label them based on what we see. Most people would describe me as “that girl with the bone thing”.

Since there were so many girls in my class in grade 8, to differentiate between all the other girls who shared the same name as me. “Oh, she’s the one who’s always in the hospital; you know, the gimpy one?” where things that commonly came back to me thanks to word of mouth from my friends.

I didn’t realize it at the time, but that was stereotyping me. At the time, I just felt like crap because that was the label I had earned in middle school, and I knew that it would follow me throughout high school. That’s how everybody would remember me. I once wrote about the things my classmates commented in my yearbooks throughout middle school. Luckily, yearbook comments throughout high school weren’t as “disability oriented” as they were in middle school. I had worked hard to make people know the real me, not just see me as “the girl with a disability”. I worked hard to let my personality and other traits shine through the disability, and it did pay off.

Like I’ve mentioned before, you do need a support group. I believe that you need a support group for everything; as they are the people who will pick you up when you’re down and know you for you. They won’t describe you as “a person with a disability”, but as a person they like.

I have my family and friends to thank for me being successful in pushing my disability to the back burner. By the end of high school, I was able to have people say “Ya, I know her. She’s really nice” instead of “Oh ya, that girl with the disability”. It was empowering.

Unfortunately, it was also short lived. I don’t exactly have a label as “someone with a disability” in college, but I do lack that circle of friends that was my daily support group. Truthfully, it took me a lot of hard work to become comfortable in my high school atmosphere, but high school only lasted 4 years. Before I knew it, it was over and I was back to square one. It took me a year in middle school to make new friends; but likely those people were with me in high school. None of them are with me now, so I wouldn’t be surprised if it takes me a year to make new friends here at college.

At least the college atmosphere doesn’t focus on labeling someone based on race, disability, or gender. Yes, they still do the “oh she’s popular”, or  “she’s weird” labeling; but it doesn’t focus on my disability (unless I am literally weird because of my disability).

Recently, I found out about a group called People First, an organization formed because some of the people in the communities felt as if they were not considered people first. They felt as if they were talked to, about, and treated according to the disabilities they were labeled with. Their vision is that they wish everybody in the community was treated equally, regardless of mental or medical disability.

I think every community needs a group like this; a group that will educate them on how everybody is equal and we really don’t need labels. What do we even need labels for? Why can’t we just describe people by their positive traits, such as their amazing personality or interesting skills?

I suppose we put labels on people to make things easier. It is easier to label a group of people then to think of them as individuals with different personalities, morals, goals and achievements. But it’s wrong. Who wants to be known as a label? If you have a disability of any sorts, than you probably know what I am talking about. The feeling sucks. All you really want is to be known as you, not as your disability.

So here is an idea for everybody; let’s put people first and labels last.

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Oh noes, look at my toes!

November 1, 2007 at 6:28 pm (blogging, myself & I, pictures & videos, rambling, real life, story telling)

So I have decided to share with you all my gorgeous toes, since I’ve already showed you my arms and legs. So, here we have it; my toes:

two feet

Yes, they are all festive for Halloween! But that aside, you’ll notice that my left toes are shaped very interestingly. They have been like that since long before I could remember, and I always have to have them placed in that way, or else it is extremely uncomfortable and painful.

Here, take a closer look;

oh noes my toes!

I know they appear to be webbed; but they aren’t. They are just very crocked. You can only imagine the discomfort of painting my toe nails, since the baby toe and the one beside that sort of curve inwards and if I move them it is very uncomfortable and painful, but I still do it anyway.

I do remember on one occasion after a surgery when the nurse was trying to help me get comfortable. She tried to pry apart my toes and get them straight for some ridiculous reason. Of course, this intrusion was followed by me screaming and crying. My mom just calmly walked up to me and readjusted my toes to the position that they have always been in, and I shut up immediately and went to sleep.

I never really understood why the lady was touching my toes in the first place and moving them around trying to adjust them. If I’m not complaining about something, please don’t try to fix it. Changes are you’ll just make it worse.

Amusingly enough, I never really had a use for the nurses since my mom stayed with me during hospital visits. I am naturally very shy when it comes to going pee, and I definitely did not want strangers helping me out. So my mom did. I disliked it when anybody but my mom adjusted my pillows and blankets; as they never did it quite as right as she did. She also sneaked good food for me to eat because she knew how nasty hospital food could get. If I needed anything in the night, she was there. Really the nurses were only there to give me medicine and check my IV.

Yes, I suppose you could say I really am a strange person, from my toes to my preferences!

~*~*~

Do you have any interesting stories (like my odd toes) that you feel like sharing in the comments? Feel free too! I love hearing them!

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Not enough hours

October 28, 2007 at 8:39 pm (blogging, myself & I, pictures & videos, rambling, real life, story telling, working, worries/concerns)

Time goes by so quickly, especially when you are busy. Unfortunately, it’s back to school tomorrow; reading week is over. Regrettably, I have not yet started any of the assignments due this week. I’ve been really busy working practically every day and when I’m not working I’m trying not to move because my back still really hurts.

No, I haven’t gotten it checked out yet; but don’t worry, I have found my health card and plan on going very soon. When I can find the time that is between working and doing the EVER so important assignments due this week.

I am embarrassed that I haven’t started those assignments yet. I have only worked for this one week, and already I am feeling as if I’m falling behind – but to my credit, I normally procrastinate to the last possible minute anyway. At least I’m procrastinating for a good cause; money.

I did my first overnight sleep at the group home Friday night. It was extremely scary, I felt very uncomfortable in the overnight sleep bedroom. I couldn’t fall asleep because it smelt like a funeral home. Then the awake overnight person (the one who stays up all night in case any residents get out of bed) told me some creepy things about the house, like sometimes you can hear someone talking to you but you can never make out what is said. I guess that explains the child’s laughter I heard.

Not only was it creepy, but the bed was completely uncomfortable. Lately I haven’t been sleeping well at all. My back kills me, and lying on my side is uncomfortable and painful. I always have trouble lying directly on my back, and that’s what I’ve had to do lately.

Yup, so I haven’t been sleeping well. Lucky me also woke up this morning to find that my left hand feels extremely cramped for some odd reason and it hurts a lot to make a fist and grip things to pick them up. Don’t know what that means or where it came from.

I’m thinking that I should call my specialist up in TO and see what the dealo is. Why am I falling apart? Its only week 9. Anybody got super glue? Girl, Dislocated – can I borrow some of that duct tape? Please?

Well I do have some good news. I got to go to the annual Halloween dance at the rec group building. There were some awesome costumes; this was by far my favourite costume:

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Get it, deviled egg? I love it.

And yesterday was my oldest sister’s annual Halloween Party. The decorations were amazing and it was good times; for that short while I was there anyway. I had to leave early because I worked at 8am today and my boyfriend, the only ride option, also had to work early. So unfortunately I missed it but I’m sure it was amazingly fun!

Well, I am finally going to get off the net to start all those assignments that are due this week. Perhaps I will have a bit of a lay down first though; I am so tired and I have to do an overnight sleep again tomorrow night. Might as well get all the sleep I can now!

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Lipstick won’t cover THIS mess up

October 23, 2007 at 3:22 pm (blogging, myself & I, opinions, pictures & videos, rambling, real life, story telling, surgeries, worries/concerns)

Directly after one of my surgeries, the breathing tube they were removing from my throat slipped and cut the right side of my lower lip. It became infected and remained so for several weeks. Before this, I never got cold sores, but then I started to. Every time I was getting a cold or virus, I would get a cold sore. Probably because there was more bacteria in my mouth, and thanks to the after surgery lip infection, that area of my lip is more prone to getting cold sores. I always get them in the same spot too.

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I think that during the impact of having two people jump on my head and back, I must have bit down on my lip. Now it is infected and looks like a cold sore, but I can’t be too sure if it is. I might have just bitten down on it and caused the skin to break, therefore causing another infection.

Now my lip is very sore. I ran out of that Abreva stuff and really need to pick some up. Usually it helps with my lip issues, be it a cold sore or an infection. That’s what I used after that surgery when my lip got infected, and it helped.

Alas, I am wondering how I could possibly get an infection while in a clean hospital, but I suppose I should not question it. This is my life, this is what happens to me.

If my back pain doesn’t go away by Thursday, I promise I will go see a doctor about it. Unless it will prevent me from going to the Halloween Dance at the recreational group. Then I’ll put it off again, I really want to go!!! I won’t be dancing of course, but I already have my costume and I’m pumped to go!

I’m about to get ready for work again. I still haven’t decided on what I’m going to do. If the house manager is there, I will talk to her about things. I really don’t want to give up, but what assistance can I be? However, giving up is bad because then it will prove to everyone who didn’t believe I could do it that they were right. Who wants to prove someone right for not believing in you? Ok, so I suppose they just know me and my limits better, because they are the ones that watch me crash and burn, so it really isn’t fair to say they don’t believe in me. Sigh. This is my career though…

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