Avoiding Bloody Situations

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

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.

It’s Been a While

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.

What’s wrong with that girl’s arm?

 

pffas.jpg

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.

Work and School

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!

Every Stitch Has a Story

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.

I am a Person First.

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.