Not a textbook case

September 15, 2007 at 3:28 pm (myself & I, opinions, reflecting)

Almost a year ago, I started a blog called Bumpy Bones. When I first started the blog, I set out to inform the world of Multiple Hereditary Exotoses, all the while explaining true experiences I have had with the disorder. I wanted other teens, kids, and even adults to feel like there was someone out there that they could relate too. Having a disorder is particularly difficult in today’s society, what with the media screaming out what’s their description of “beautiful”.

If you are still in the blank about what Multiple Hereditary Exotoses is, let me break it down for you; it’s basically abnormal bone growths underlying architecture of regular bones. That basically just means that extra bones grown on the plates of regular bones. This disorder is not contagious, although there is a fifty percent chance that it can pass be on to your children as it is the dominant gene (just like brown eyes, for example). There are several different levels of severities; some people have very little symptoms and are not really affected by it at all, while others will have a lot of symptoms and have a great deal of difficulty with it.

I’ve only met two people who have the disorder, other then myself that is. I think I might be somewhere in the middle, or quite possibly have it quite severe. I’m not sure. I have had roughly 10 surgeries in my life, all with interesting stories to go along with the interesting looking scars – I’ll get to them later in greater detail. I’ll try to remember every last one of the surgeries I haven’t already talked about in my old blog. Anyways, I’m also a completely random case. There isn’t anybody in my family who has MHE. They generally call this a “genetic mutation”, and as my doctor used to say; it has to start somewhere.

Not having anybody to talk to who understood what I was going through was difficult, especially as a child. I didn’t like feeling like a “freak” of nature, and since my doctor didn’t know what to call it and didn’t know anybody who had it, I really had nobody to talk to. I literally felt like I was alone in the world.

That all changed when my doctor finally found out about MHE and Me, a support group for people with MHE and their families. I was in grade seven when I first got in contact with the group, and that was when I met one of my closest friends from afar, Mandy. She started talking to me while I sat at home sick one day on AIM. Since then, we keep in touch through email, IM, and letters. I tell her everything and find it so refreshing that she knows where I’m coming from.

I choose A Medical Mystery for the title of my new MHE blog because my doctor used to joke that I was a medical mystery. He would have an assumption pegged down for me, and all of a sudden the complete opposite would happen; sometimes not for the best either. For example, my first surgery was supposed to be a breeze; in and out he said. It was on my left leg to remove 3 or 4 bone growths that were causing me discomfort and pain. I was in grade 3. He assured myself and my parents that the procedure was a straight forward, easy one. I suppose you could say the surgery went well, but I don’t really remember; I was super drugged up on pain medication. After the surgery, my leg started to swell. By the end of the day, they had to cut my pretty pink cast off from the hip down to my toe and scheduled me another surgery because my bone had started bleeding. My parent’s were bewildered, a bone, bleeding? They had never even heard of that happening. So into the operating room I went again, and they cut me open to drain it. I had to have a third surgery before I could go home so they could stitch me back up again. After that surgery, my doctor approached each surgery with caution. I clearly was not a textbook case!

medical textbook

Just like everyone else, I have my good days and bad days. MHE does physically affect me, and I’m in chronic pain all of the time. I manage it by not acknowledging it. I’ve never been one to down a bunch of Advil and Tylenol hoping for a result I know won’t be there – Advil and Tylenol have no affect on me what so ever, unless I have a headache, then it helps the headache.

In case you don’t already know, MHE causes chronic pain. Sometimes, bone growths (those are the extra bones I was talking about) can cluster around joints. They can also put pressure on ligaments and nerves. Walking for long periods of time, running and lifting heavy things intensives this daily pain for me, so I try to avoid doing that. The 10 surgeries I had were to remove or shave down the extostoses (or extra bones/tumours, as I’ll probably also call them). I had several scares were a tumour was pressing on a nerve and causing a lot of damage. I lost movement in my ankle for a little while, but that’s a story for another day.

I re-started my goal again because I sort of lost steam with my last blog. I got busy during the summer and it was super hard to get back into. This time around, I’m going to approach it from a more medical view; but don’t worry, I’m still going to keep my opinions, experiences, and feelings on the matter clear as day in this blog.

I do have a rule though, if you read; comment please. I want to know your opinions on what I’m writing. Is it informative? Does it make you feel like you’ve been there? Do you relate to it, even if you don’t have the disability? Share your own experiences and feelings! And trust me, I didn’t just write 1025 words for 0 responses!

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5 Comments

  1. Avitable said,

    This is a comment. I am leaving it.

  2. Jess said,

    Jeeze Avitable, for a moment there I thought you were going to say something inappropriate…good thing you didn’t 🙂 haha

  3. Avitable said,

    Good thing!

  4. Mom said,

    Hey Sweetie,

    We miss you big time!!!!
    Love the new blog………keep up the good work.
    Have added it to my favorites so that I can check
    it out regularly. This is a good way to keep in
    touch with you, lol. Hope you come home soon…..
    or I’ll have to come up there & find you…
    mwahhhhh……

    Love ya whole big bunches,
    ~XXXXOOOO~

  5. Jessica said,

    I miss you too Mom! It won’t be hard to find me…I’ll probably be sitting in front of my computer 😉

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