I’ve been meaning to blog about this issue for quite some time, but I’ve been having trouble wording it. Let’s face it; relationships are a big part of growing up, and high school is where most of these relationships are formed. Whether they last forever or just a year, they still impact our lives greatly.

Unfortunately, high school is also were complexes are formed. I know I’ve mentioned before that I’m insecure about my body, and that complex was formed at a young age. Kids are cruel, let’s face it. Sometimes, even adults can be cruel. Ignorance is a barrier in every language, and it doesn’t matter how old you get because there’s always going to be someone out there who’s ignorant enough to judge you or be rude to you. The key is to know that they’re ignorant, and not pay them any attention. It’s easier said then done, I know.

When I was daring enough to wear shorts to school during those hot, summer days in public school, I had a couple of boys pick on me practically non stop. They’d ask me – always very rudely – why my legs we’re crocked. They’d smirk and say it with disgust. Had they known more insults other then “Disease Girl”, I’m sure they would have thrown them at me.

In middle school, I wanted to not care about what other people thought about me. It didn’t work out that way though, and I ended up hiding behind layers and layers of clothes. It took me a lot of courage to wear a spaghetti strap dress to my grade eight graduation, and I only did it because I didn’t want to look like a grandma. I knew that people would already be staring at me, as I would have to hobble up to the stage to accept my diploma on crutches. I had just had a major surgery on my leg, and it was lucky that I was able to use crutches. My doctor thought it was very possible that I’d be accepting my diploma in from a wheelchair.

That wasn’t the case though, and thus began a long battle of my body issue: whether to expose my arms and legs or to hide them beneath layers of clothes. Some days, I’m all for wearing t-shirts, but other days I wrap myself up in a sweater. Even if it’s boiling hot in the classroom, I won’t take off the sweater on those days. I dislike it when people ask me about my scars, because it’s awkward. It really is such a long story, and I feel so naked when explaining it. One always feels emotionally exposed when talking about their insecurities, so this is no surprise.

I didn’t have any boyfriends in middle school. My peers knew me as the “hospital girl”, and nobody was interested in me – that I knew of anyway. They knew that I was often in the hospital having surgeries, and at that age they chose to not get involved with me.

Throughout my early years at high school, I had insignificant “relationships” with guys from different schools. These “relationships” didn’t last longer than a week; I was too uncomfortable with myself to have a boyfriend. In grade eleven, I had my first “serious” relationship. It lasted only a couple months, but I grew close to the guy and I really liked him – or so I thought anyway. After he broke up with me, he came online and told me my “bone thing was disgusting” and that it was one of the main reasons he dumped me. It hurt at the time, but it doesn’t.

Now though, I’m past all that. I know now that you don’t need a guy to feel good about yourself, you should be able to do that long before you get a boyfriend – or girlfriend. What makes you the happiest is being comfortable in your own skin. I’m not saying I’m completely comfortable in my own skin, but I’m definitely getting there. My semi formal is tonight, and I’m wearing a strapless dress. Two years ago, I wouldn’t go near a strapless dress if my life depended on me. I’ve almost done a complete 180 around how I used to feel about myself….almost. With every passing day, I learn more and I’m able to trust myself just a little bit more.

Happiness is how you perceive things, and in how you perceive yourself.

Today has been one of those long days that seems to drag on forever. I feel this way partly because of the lack of sleep I’ve been getting lately, and because of something that happened today. Not to mention, my old bones are feeling the pain of cold weather. All in all, it was a pretty bad day, until I came home and checked my email that is.

Amanda did a piece on my blog. I’m pretty excited about it, and I hope that it will bring some traffic to my blog. Maybe from people who know someone with MHE or who have it themselves. It’d be nice to see what my fellow MHE’ers have to say about my blog, or even people who don’t have it but who are interested in reading about life with it.

My clinic appointment that was supposed to be on December 6th has been moved to January sometime because they over booked the clinic. I had some pretty intense questions about my messed up toes, and I was hoping to talk to my doctor as soon as possible. I’ll be switching from Sick Kids to an adult hospital before my 18th birthday, and naturally I have a lot of concerns. I’m just getting used to the guys at Sick Kids, and now I’ve got to get used to a whole new batch. One of the things I’m frightened of is the nurses – I bet they won’t be nearly as nice and patient as the ones at Sick Kids. Plus my mom won’t be able to sleep in my room over night.

Sick Kids is really good for that – you can have one parent spend the night with you and stay with you 24-7 until you’re ready to go home. I know I’m nearly 18 and I don’t need my mommy at my side but I still want her there. I still get scared, especially at night. But there are kids that really need the specialists and the rooms, so I won’t complain too much about leaving Sick Kids.

I was considering going in for a major surgery involving any areas that cause problems now or might cause problems in the near future because I want my trusted doctors at Sick Kids to be the ones to operate. The only thing preventing me from my “master” plan is that if I have another surgery, even a minor one, I’ll have to take time off school. This isn’t good, this semester I peer help in the morning and next semester I peer help in the morning and then I co-op all afternoon. I can’t miss any classes or else I’ll basically fail the class. You need a certain amount of hours to pass.

It’s going to take me a long time to get used to a whole new whack load of doctors at the “Big Kid” hospital. I’ve been to regular hospitals before, and I have to admit I’ve been spoiled at Sick Kids. At Sick Kids, it’s colourful and everyone is friendly. At regular hospitals, the walls are bland and most of the nurses don’t smile. Nothing is bright and colourful. To me, it seems very scary.

Yeah…I’ll admit it – I’m scared. Not to mention, I’m really nervous. I’m the kind of person who is used to regularity. Sick Kids to me is a regular thing, I go once a year – if not more. I have a surgery at least every other year. This year I had two surgeries. My point is that there is going to be a lot of changes. Changes tend to give me mini panic attacks. I don’t know why, but they do. Especially big changes, like this one.

I’ll keep you all posted on how that goes for me. I won’t find out until the New Year anyway, but still. It’s good to let this all out. I know I’m being silly by being nervous about this whole hospital switching deal.

As the only one in my family with MHE, I often felt alone and misunderstood. I know it sounds really stupid, but that’s how I felt before meeting everyone from the MHE group. I felt like an alien – before my doctor told us about the Bumpy Bone Club, I thought I was the only one in the world who had MHE. In fact, I didn’t even know what I had.

Now though, I know I’m not alone. Meeting people with MHE has really helped me. I’ve gotten to talk to people my age who go through basically the same thing as I do. Mandy and I have become especially close over the past few years. I remember when I got my first IM from her; it was in grade seven and I was staying home from school either after a surgery or because I was having one of those bad days. My bad days are when my bones ache so much that I can barely move.

We hit it off right away, and every time I’m feeling down, I talk to Mandy about my problems. She always understands because she’s been there. Without everyone from the MHE group, I probably wouldn’t be as sane as I am. It’s really good to have someone to talk to that just knows what you’re going through and how you feel. It takes a lot of your shoulders; it makes you feel less stressed about all the surgeries and doctors appointments.

I have friends who don’t have MHE, and it’s really hard for them to understand what I go though. I have one friend who gets really mad at me if I miss any school – probably because it means she has to sit alone at lunch. It really sucks because I’ll try to explain why I’m not there and she’ll basically imply that I need to suck it up. A lot of people – even my sisters – think that I fake it. This hurts, but it’s hard for people to understand what you go through, it’s hard for them to walk a mile in your shoes when they’ve never experienced a surgery or been in a hospital for anything “big”.

All you really need is one person who understands what you go through because they’ve experienced it, and nobody else’s opinion has to matter because you know that you aren’t faking. I’m hoping that my blog will offer that to a lot of people. If not, just drop me a line sometime via email.

My mom has been a distributor of Xango since the end of this summer, and she’s been taking the Xango Mangosteen Juice since she became a distributor. My mom has a lot of arthtitic pain, and her joints often become inflamed and swollen – since she has been taking this juice, she’s been feeling a lot better, so I am going to start taking it and see what results occur.

Mangosteen juice is a tropical fruit bevearge that tastes surprisingly very good. Usually, health juices taste nasty – or they do to me – but I really like the taste of Xango juice. Mangosteen juice contains antioxidants and xanthones. It’s rich in vitamins and minerals such as vitamin C, B1, B2, B6, potassium, iron and calcium.

Here are some of the things Mangosteen juice and the lovely xanthones do to help you:

• It may help modulate bacterial infections (like an antibiotic) – which is a pretty big thing when you’re getting surgeries all the time, infections suck.
• It helps with anxiety – which I think I have.
• It’s an anti-depressant effect.
• It supports gum and eye health.
• It may help with migraines – my mom gets them often, but since taking the mangosteen juice, she hasn’t has many at all.
• There’s no doubt about it being an energizer – since taking it I have had a lot more energy.
• It’s an anti-inflammatory – which means it may reduce inflammation, something positive to look at if you have MHE as the pain is mostly caused by inflammation (unless it’s to the point where the bone growth has grown so much it’s damaging the nerve)
• It’s an analgesic – which means it may reduce pain.
• It may reduce nerve pain (oh yay, I often have nerve pain!)
• It may help with viruses and infections.
• It may help support bone mass.
• It may help improve immue response.
• It may help harden the arteries.
• It helps with irritable bowels – which is another curse I have.
• It helps fight fungus – which is good. Let me tell you all, having a cast in the summer and discovering when you have it taken off that you have fungus on your feet isn’t very pleasant at all.

I say ‘may’ for those things that Mangosteen has been proven to help with because everyone’s different, and you have to be pretty regular when taking Mangosteen Juice in order to see those really big differences, which is why you’re supposed to take the 90 Day Mangosteen Juice Trail, this way you give the juice three months to start working it’s magic. It’s worth a try though, which is why I’m trying it.

I’ll keep you all updated on how it goes for me.

I was unsure of whether or not to post pictures of what a bone tumour looks like once it’s outside of your body, because it’s pretty graphic – but I find it really interesting. Just be cautioned, it’s not too pretty, but it’s the less gruesome one of the pictures I was sent.

Before I saw these pictures, I had no idea what they looked like. I often wondered, and I remember asking my doctor on several occasions if he could kindly put one of mine in a jar after the surgery so I could look at it – but once they were removed from my body, my extra bones went to the lab for testing.

It’s pretty gruesome, I know, but I like knowing what I’m up against. This is Tommy Tumour*.

*Tommy Tumour is a cartoon character that’s featured in the MHE newsletter every month, he was created by Nicole – one of my buddies with MHE.

With having an operation comes pain, your body is being invaded and harassed by doctors’ scalpels, picks, and other such tools. Naturally, after all of my MHE surgeries – I’ve had to have pain killers. For the first while, I could have low dosages of codeine, but they’d always end up upping my dosage because my body would grow used to it. Now I’m practically a drug replete. Pain killers that should work for someone of my size and age usually just don’t cut it.

During my March surgery on my arm this year, I became addicted to the pain killers I was having. It was really, really hard to get off them. I suppose I went about it the wrong way by going cold turkey, but I wanted off them. I couldn’t go back to school on Hydromorphone and I was really annoyed at the fact that what seemed like a simple surgery was causing me a lot of time away from school. The operation had been on my right collar bone, shoulder, wrist and finger, so I went in thinking “no big deal”. It was the Hydromorphone that was causing me to take more time off school. I was taking that drug plus this Novo Gabapentin stuff that I had never taken before. It was for chronic pain, my doctors wanted me to take it everyday so that my daily pains would go away.

One of those medications was making me sick though, I couldn’t even take a bite of a sandwich without getting sick to my stomach. I didn’t know which one it was though, so I went off the Novo Gabapentin first – as it was a medication I had never been on before. It didn’t seem to affect me at all because I was still taking the Hydromorphone every four hours.

After a while I decided I didn’t want anymore pain killers and would settle with just Tylenol 3’s. I stopped taking the Hydromorphone all together and started taking Tylenol 3’s. I remember the first night doing this, and that was when my parents had friends over and were in the garage all night. I tried to go to sleep but I literally had the shakes. I was sweating and freezing at the same time. My arm was in a lot of pain and I couldn’t get to sleep at all. I went outside to tell my parents what was going on and my dad talked me into taking one Hydromorphone – just to get to sleep. He thought it was a bad idea to stop taking it all together. I had a lot of trouble the following days trying to get off it, but after four very long days (or so it seemed) – I stopped getting the chills. My arm still hurt a lot because Tylenol 3 really doesn’t do a lot for me. Still though, I felt a lot better because I could finally eat again and regain my strength so I could finally go back to school.

I had a surgery that following May on both my legs. This surgery I had less problems with medication. If my legs weren’t causing a lot of pain and if I didn’t really need the medicine then I went without until I really needed it or just had Tylenol 3’s. I didn’t want to have a repeat of the last time, and this way was pretty affective.

I guess I wrote this entry because I just wanted to say that it’s really, really easy to get addicted to strong pain killers and not know – I didn’t know I was addicted to them until I tried to get off them. Just be really careful when taking strong medications, which are narcotics, and if you do get addicted then just wean off them slowly. If you take two every four hours, then cut it down to one and a half. After taking it like this for a couple dosages, or days even, then cut it down to just one – and so on and so fourth. If you continue to have problems then contact your doctor. But never ever go cold turkey, it’ll just cause more problems for you.

I’m gonna try to recount the first surgery I ever had, and I’m gonna try really hard to remember the finer details. It was in grade one or two, and I’m now in grade 12 – not to mention there has been a lot of surgeries since then and they’ve all blended in together. This one I remember the most however, excluding the more recent ones. I probably remember this so well because the whole story has been retold to me a lot.

I can’t even remember the date I had it, I know it was sometime in the winter because I remember there being snow and ice – lots of ice, which was unfortunate for me – and it was before Christmas because I remember opening presents from the couch with my leg up. The surgery was to be on three spots on my left leg; above the knee on the outside of my leg, below the knee on the inside of my leg and on my ankle on the inside of my leg. I was told to not eat or drink anything except water after 12 am and be at the hospital for 6, it was a long wait. It didn’t help that my parents insisted on eating muffins in front of me while we waited. It’s rather funny, I don’t eat breakfast and lunch usually during the school days because I never have time or money, and I usually don’t complain as much as I do when I’m told to for a surgery. This is probably because when you’re told not to eat, you want it more.

I don’t really remember the events leading up to my surgery except for one small thing; they allowed me to ride a red shiny bike into the operating room. I thought this was a sweet deal – until I saw all the “tools” they would be using on me. I literally turned that bike around and tried to get out of there – but the nurse grabbed the back of the bike and pulled me in. This will be the first of many attempts of escape before a surgery.

When they put the “gas mask” on me, I felt so trapped. It didn’t taste like pizza at all – like the nice man had said it would – but the taste of it made me want to vomit. I tried to call at them to take it off, but they didn’t hear me and I was out like a light in less then a second later. I think that was one of my only surgeries where I’ve dreamt. I had a really weird dreams about dancing Dalmatian’s and big mosquitoes all lined up biting at my skin – I’m assuming I had the mosquitoe dream because they were putting the IV in and it subconsciously felt like a mosquitoe bit. As a child, my biggest obsession was Dalmatian’s. I had Dalmatian everything, they were my favourite kind of animal.

There were a few complications during the surgery. It was discovered that I have prolonged bleeding, and the really cool coloured cast had to be cut off that very evening. I needed another surgery to open the stitches up and drain out the blood. I also needed a third surgery to close the stitches before I could go home. I was so popped up on pain killers that I barely remember any of this. I think I slept for the whole time – or almost the whole time.

I’ve had a lot of surgeries, but I still get scared everytime I go in. The fear usually doesn’t arrive until I’m sitting in the OR waiting room, waiting for my turn. That fear usually doubles by the time I walk into the OR, and it usually is followed by my pathetic attempts at stalling. Darn that bladder, I always seem to need to go at the last minute.

So yeah everyone, that was my very first surgery. I’ve had around nine or ten since then, and my family tends to refer to me as a “pro”. Sure, I know all the procedures, but I don’t think I’m quite at the pro stage just yet.

My name is Jessica, better known in the blogging world as “Miss Misery“. I’m seventeen years old, and I’ve just started this second blog of mine as a project. This little project of mine is going to be a small contribution to the MHE world, to help make it known I guess. My intentions in creating this blog are to give teens with MHE someone to relate too, and to let them see inside my head. Yeah I know, be warned – it’s crazy in there, but it should be interesting.

For those of you that don’t already know what MHE is, I’ll get down to the explaining part of this entry. Multiple Hereditary Exotoses is an inherited disorder of bone growth – basically meaning that if you have it, you have extra bones in your body. I’ve had doctors tell me it’s caused by extra calcium in the body, but I honestly don’t know for sure what causes it. I have tons of extra bones, or bone grows, that sort of grow out from my regular bones. It’s rather difficult to explain, and it sounds far more disgusting then it actually is. There are a lot of different “levels” of MHE, some people only have a few extra bones that go away after the first surgery, other’s like myself are lucky enough to have a whole bunch of them that keep coming back with every growth spurt.

Because of these extra bones, I have several surgeries were they remove the ones that are causing problems. These annoying little bumps can some times cause big problems. In grade eight, I had a bone growth on my right leg that stretched out the nerves so much that I almost lost the use of it – or would have in a couple of months had I not gone in for a surgery, but that’s a story for another day. I plan on trying to remember each of my surgeries, to give you guys an idea on what MHE has been like for me in the past, and of course what it’s like for me in the present every day.

I have around 14 or so scars from these surgeries, and the newer ones are really huge and ugly because of the way my skin heals. It takes a very long time for them to not look so angry, but eventually they do. I’m very insecure about my body, I don’t like wearing short sleeves and I have never worn shorts or a skirt to school before in my life. I’m terrified of people’s reaction to what they see. I know it’s really lame of me, but hey. Can’t help how you think, right? Well, I’m trying to help how I think. My goal is to wear a mini skirt (not too mini of course) before I graduate from high school. Thanks to last surgery, I’ll have a little more time to achieve this goal – I’m short two credits that I couldn’t catch up in and I won’t get to graduate until the 2008 school year.

I have good days and bad days, just like everyone else. Hopefully the teens with MHE who are reading my blog will no longer be ashamed of feeling sorry for themselves every once in a while. Being a teenager is hard enough, but adding a medical disability into the mix makes things a little more complicated. I’m hoping people can learn from my mistakes and feel connected to someone. I know that before I became a part of the Bumpy Bone Club, I felt completely and utterly alone.

That’s all I have time for today, as I’m off to go babysit for a friend of my dads, but please go check out all the stories here, written by kids with MHE for kids with MHE.