#hme mo

[multipleexostoses]

Rant

Soo I recently just quit school and I am searching for a different school so that I can study on my own. Not many of you know but I’ve got a chronical disease called multiple hereditary exostoses. Which basically means that I grow extra bones everywhere. I go to the doctors atleast 3x a month and have atleast 1x a year an operation. School just ended where I live (which is Belgium) and I couldn’t go to school that much because of my pain and I had to go every week to the doctor/hospital. I’m also on morfine plaster (keep in mind that I’m only 19y). I’ve been absent from school from the 3rd week of September. (School in Belgium begins the 1st of September till 30 June). The school never called me not even once to see how I’m doing. They never even send a message to me about my schoolwork. Never asked when I’m coming back. And yesterday I got a message from a classmate saying ‘it’s not fair that they(=school) failed you this year, I’m sorry’ and I was shocked apparently school can tell other people and the whole class that I failed but cant even pick up the phone and call to tell me? My mum send the teacher a message and she basically said “that it was my fault because I wasn’t motivated enough”. I wasn’t motivated enough? I’m sorry but everyday I’m in pain and I was nearly everyday by the doctor or in hospital. I have spend this year more in a hospital/at doctors than at home. I’m sorry that I couldn’t attend class while I was having revalidation so I could even walk. Because a couple of months ago I couldn’t even walk from the pain. So what I learned and basically what I mean with this rant is. I NEVER FAILED SCHOOL! SCHOOL FAILED ME!! The education system failed me! And I’m pretty sure I’m not the only one. This education system is not really suited for students that can’t go full weeks to school, that can’t go everyday because of an illness. If you went or still going through this just know that YOU NEVER FAILED SCHOOL! School and the education system FAILED YOU!!!

Sorry that this rant is so long, I just had to get this of my chest.

Love Kaya! X

[multipleexostoses]

Mental Problems with HME

A man told me once this

Once there was a man, he woke up and saw a rock in his yard. He never saw that rock before so he though this must be an astroid. He tried everything to put the rock home but without success. He became really depressed and there is no day he didn’t though about the rock but it was just too heavy and large

So the man asked us: What would be your advise to the man? 

I heard a lot of answers like: put the rock to pieces, eat chocolate, ask your friends for help and to little steps like today you are gonna try for 1cm/0,4 inches and tomorrow maybe 0,3inch/0,5cm and one day you will reach your goal and before you know the rock is at your home

Exactly! Told the man. Actually the rock is HME and you just gave yourselves advise! We were all quiet, we didn’t know what to say and after that the man told us: look it is actually ‘’easy’’

Incident -> thoughts -> feelings

for example:

Incident: a lot of pain -> thought: kill me -> feeling: depressed (or suicidal) 

or

Incident: a lot of pain -> thought: hey my pain was once a lot worse -> Feeling: less depressed, better

Sorry I just had to share with you

I know it’s easy to say but stay strong i really hope this trick helps!

-Naziha

[multipleexostoses]

Doctors

Do you guys know the feeling of a doctor who doens’t understand you? Well I do... I had a doctor who thought that I was making everything up. Like I enjoy attention. My previous doctor (oh yeah I got a new one) has called me handicapt, told me to go to a school for people who isn’t capable of learning. Told me that even though I’m in pain I just have to take a painkiller and go to school. And she never really understood HME or what it stands for. She never ever google’d it. So I was like I’m done. I’m going to get a new doctor. So I did and I’m really happy. She understands me. And she immediately search HME up. And when I’m in pain, she understands it. I finally feel like my doctor understands me.

- Kaya x