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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These Shoes

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

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

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

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

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

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

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

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

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Differences

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

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

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

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

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

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

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

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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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X-Rays and E-mails

May 31, 2008 at 5:32 pm (blogging, myself & I, rambling, real life, worries/concerns)

I meant to update sooner then today, but I got caught up in some family matters and I actually was working for a few days. I had a 4 day job shakeboard dancing for a pizza place (shakeboard dancing is holding a promotional sign and dancing around), only by the end of the 2nd shift my back and legs were killing me. You’re supposed to dance the entire time…4 hours of dancing and holding a huge sign are not easy. I thought it would be…and the idea of making 14 bucks an hour was certainly appealing but I’m paying for it now. My friend had to take over for me…which sucks. I’m sort of bummed out that I couldn’t even do a four day job.

Anyways, now for the hospital visit update. I went on Tuesday with my mom and Matt…my boyfriend, who wanted to go. I expressed my concern for my ankles and hips, and the doctor sent me for x-rays. Apparently, I’ve been having such problems with my hips because there are several bone growths that act like stoppers and prevent my hips from being as flexible as most people’s hips are. Unfortunately, they can’t do anything about that because if they shave down the bone growths it will make both my hips weak and cause them to break.

My ankles have the same issue as well. They keep locking up because the inside bone of my legs (I forget the medical term; I’m sorry guys…I probably couldn’t spell it anyway) is shorter then the outside bone of my leg and the tumours around my ankles also act as stoppers. I guess that while although these things cause pain, they also support my joints because my ligaments are loose and stretchy.

However, I will be having a surgery at some point this summer. The bone tumour on my ankle that is growing more than any of the other bumps on my body is a cause for concern; and it might help the locking issue if it’s removed. It is safe for the doctors to remove that one. I’m also getting a small tumour removed from my left middle finger; so it’s just a minor surgery that’s only supposed to last about an hour and a half (if all goes well).

So that’s the doctors appointment in T.O. Monday I might have to go to the emergency room if this pain doesn’t let up and get my back x-rayed to see if I really did do something to the discs…since I never did that after the back injury I received last fall.

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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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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.

picture-239.jpg

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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