Europride 2016

This year our country hosted the Europride which is like a more international and bigger gay pride. Me and a friend went two days. On friday we went to the Drag Queen Olympics, it started at 7 so we had a nice day in Amsterdam. I really wanted to buy a flag so we went to an info-point, but they were sold out. We both did get a foldable waterbottle, a bag and a hand fan all for free! She said “I don’t feel like selling them anymore, no one really buys it, the people who are interested just get them for free”. That was really cool because I wanted something that said “Europride 2016”. This is what they look like:

So that evening we went to the Olympics, there were five rounds: stiletto run, bitch volleybal (that’s really what it was called), hula hoop, handbag toss and in the final round the 4 winner had to dance the tango with someone from the audience. During the volleybal game, the queens were very enthusiastic and people were pushed aside, we were in front of the stage and I was in my wheelchair and people almost fell on me and my wheelchair tilted a bit but it was okay. After that the host asked if I was okay and asked the audience for an applause for me. After the games had ended, a dj started playing music and the drags danced on the stage. It was a lot of fun and they also threw cd’s with the pride anthem for this year on the stage. My friend also took a pic of me with a drag queen:


The next day we went to the canal parade with 80 boats. Apparently two Dutch youtubers (Rutger Vink/Furtjuh and Thomas van Grinsven/Gewoon Thomas) were also on one of the boats but we missed that one while we were moving to another bridge because from the bridge that we were on, you couldn’t see it properly. My sister and her boyfriend also came and I really enjoyed it all. These were some of the boats:

On some of the boats they danced but I can’t upload a video because then you need to upgrade wordpress which costs money.
For pride I made a shirt, a top and shoes:

I think that’s about if for the pride update, I really enjoyed it and I’m definitely going next year.



Time to relax

I passed the year!! I’m going to vwo 5 if that says anything to you (Dutch school system), which I am so happy with. And now I can finally relax because it’s summer break (6 weeks).
These are my plans:
-My parents and I are going to Cyprus for three weeks.
-I also want to celebrate my birthday properly with my friends since I spent my actual birthday in the hospital.
-On August 5 and 6, one of my friends and I are going to the gay pride in Amsterdam, which I am really looking forward to. I have ordered some stuff online for it like a bandana and earrings, I’m also going to make stuff myself and I think we’re gonna have a great time.
-My nose will be pierced somewhere in the next six weeks, probably after Cyprus because I don’t want my nose to get infected when we’re on holiday.
-Other than that I’m just gonna watch season 3 until 11 of Supernatural, I’ve already seen the first two seasons but now I have more time to watch it.

I’m definitely going to make a post with pictures about the gay pride and one about Cyprus, so you can expect those things. But right now I’m gonna continue watching my series. Byee

Hello again

So the good x-ray picture is finally here! I don’t know if I’ve already said this, but the first time the hospital kept printing pictures from the side and we found out that the ones from the front had just randomly disappeared out of the system, so then we made new ones but those looked a bit weird because I was slightly turned to one side. Two weeks ago the hospital checked if everything was okay with my back and my infection so they needed to take pictures again, and now I have good ones.

I also have a picture from before the surgery, so that you can see how much smaller my scoliosis now is.
Here they are (from the front):

You can see how much smaller it is now. It probably looks painful and weird with all the screws, and yeah it felt really strange in the beginning, like it was not my back or something, but you get used to it. It only feels weird when I make certain moves.
They can’t totally remove the curve(s), so this is a really good result.

I will now also show two pictures from the outside of my back:

(Yeah my shoulder blades are very pointy but I can make chicken wings that creep most people out :P)
The scar is still pretty red but that color will disappear. And even though it’s a good-looking scar, I’m going to cover it with a tattoo when I’m 18.

I must say, I went into the surgery thinking that I would have many more disabilities afterwards, being afraid that I was going to regret it and that I would become less independent but I’m really happy with the results. Walking is only a bit harder and I think it will even get better when I practice more and I can do most things just like before. I tried walking the stairs but that hurts my back a little but luckily we have a stairlift so I’m getting more and more independent again.
I also was afraid that it was going to take so much time to get back to “normal”, because I spoke to others about it and read things online about people who had a really hard time recovering and they didn’t even have a muscle problem, so I’m just really glad that it’s going so well.

The school year is finally coming to an end but I first have a testweek and I’m kinda nervous for it and I still have to study a lot for it. But after that it’s finally vacation and then I can take a good rest.

Oh and we took the bandages from my brace because they are useless and were too visible under my clothes.

(still 26 days until I can throw it away, and then, after pretty much 4 years of wearing a sweaty stupid thing, I am brace free and I can wear to school whatever I want)

See you next time

I’m back home!

Okay so I’m really bad writing regularly, but I’m back home! Even though that’s already since last tuesday (6 days ago).
Now it’s really time for rehabilitation. I need to learn how to move through the house all by myself, but it’s mostly hard to get up from the toilet because it’s too low. So that’s why we bought another raised toilet seat to make it higher.
As you know I need to take antibiotics for three months, so I take three nice blue capsules of Clindamycin a day, which goes really well. They’re 2.2 cm long, so in the beginning I was afraid that they would get stuck since they looked pretty big, but it’s actually really easy.
In the hospital they gave me 4 Paracetamol pills a day, and now I don’t take any so after a few hours of sitting my back starts hurting a bit, so then I lay down for some time.
Next week I have a check at the hospital where they are going to take some blood, to see how it is with the infection. They are also going to take new x-ray pictures, and then I can show you my new back.
I’m really happy to finally be back with my two cats again (left one is called Ricky, right Charlie), after I came home, I laid down and they immediately came to me and I loved that.
I don’t really do a lot, I’m mostly on my laptop or my phone but I don’t really feel like doing anything else. I’m starting school next week with two hours a day, and then I’ll see how long it takes to be able to go whole days again. This means I need to do schoolwork, which I’m not really looking forward to, but I know that I need to do it because I want to pass this year.
On thursday, my friends came over by surprise, and I got this really cool watch 😀
So yeah now it’s just rehabilitation and a lot of schoolwork and I will also update every now and then on other things.
See you next time 🙂


Tuesday May 10, 2016
So, it’s been a long time, 12 days to be exact. And I’m still in the hospital…
I was allowed to go home if my wound stopped leaking, but it never did. On Friday April 29, I got fever and I also threw up, and that night my wound leaked a lot. They immediately took some blood, with the conclusion that I had an infection.
So on saturday they did another surgery, where they put antibiotic capsules in my back which they are going to remove tomorrow.
I also get antibiotics 4 times a day via IV therapy. But because I get a lot of antibiotics with that thing, they start leaking and hurting my vein after a few days and then they need to put another one in my arm, which pretty hurts.

Because I needed to stay longer than expected, I spent my birthday here and I missed Troye Sivans concert yesterday in Cologne. You could say I was a bit too optimistic by planning a concert just a week after I was supposed to leave the hospital, but it’s pretty rare to get an infection. I’m number 11 in my doctors career and he does this surgery for about 12 years every week so yeah.
During the surgery they also took a few tissue samples. In those samples they found a bacteria called the Streptococcus, which is one they usually don’t find with this infection. They normally find a Staphylococcus bacteria. The names of these don’t say anything to me and probably also not to you, the only thing that is important is the fact that I got an infection which is already rare and that they also found an unusual bacteria *UGH*. But luckily this one is less aggressive than the other one.

Wednesday May 11, 2016
Today is the surgery, and I’m actually not nervous at all. I know good how everything goes (which is not a great thing to know), I’m asleep during the whole thing so I don’t notice anything, and it’s not as big as the first surgery so I that’s why I’m not nervous.
The only problem is that the surgery is at 1.30 pm, and I need to be sober from six hours before the surgery, so I could only eat light breakfast. But when I’m hungry and I don’t eat for a longer time, I start feeling a bit nauseous :(.
The IV kind of made it, but it really hurt every time antibiotics went through it, but they all got through so I only need the narcosis and then during the surgery, they are gonna put a new one in my arm.

What I’m really happy about is that I can now also walk with just my IV pole, which gives me less support than my own walking thing (I really don’t know what to call it). I now have a more positive look at being able to walk properly again without any help.

Saturday May 14, 2016
So my surgery was on wednesday of course, and the wound looked really clean so that was good. Sadly they couldn’t put the narcosis through the IV anymore, they tested it with some other liquid but it didn’t work anymore. They could put another IV in but I really didn’t want that while I was awake so they gave me a mask where nitrous oxide (laughing gas) came through. They said I would become a bit giggly but that didn’t work for me for some reason. I really didn’t like it, it felt too long until I was asleep so I had a weird feeling in my body and breathing was a little harder and it made me kind of scared but I knew nothing went wrong. Eventually I fell asleep and the whole surgery went great.
I feel like I am kind of back to where I started again, because walking is harder again and my back hurts a bit, but this time I am a lot more positive because I was able to walk with just the IV pole and a little bit without anything, and that just makes me really happy (which I already told you).
I still have an IV with antibiotics, but I will probably start with antibiotics via pills or drinks just after the weekend and thus stop with antibiotics via the IV, I really hope it’s going to last until then. I will need the pills or drinks for another three months but then I’m at home so I don’t have any problems with that (unless the pills are too big to swallow).

Tonight we’re gonna watch the final of the Eurovision Song Contest. I really liked watching the semi finals so I’m looking forward to it. I actually never watched it but it’s really fun so I’m definitely gonna watch it the coming years.

I don’t really know anything else to say, byee.

Some improvement 😁


My schedule of posting daily updates isn’t really going so well, sorry for that. I just don’t feel like writing every day, but here’s another update :).

Monday April 25, 2016
So today I walked a little bit for the first time with this walking thing I have:



It even has a seat

It went okay, but it feels stupid that I can’t walk without it yet. I just need to have patience, but that’s hard to get sometimes.

Wednesday April 27, 2016
walking with my walking thing is getting easier, but I still can’t walk without it. I don’t really have a positive view on it, but I hope I just need more patience.
We don’t really know when I can go home, mostly because the wound is leaking a bit. My doctor says he sees that sometimes with a wound this big, but it needs to be over for me to leave.
The pain is really leaving, and I don’t use a lot of painkillers anymore. I’m really happy with that. I do have a bit of pain in my right hip, one of the doctors said that that’s probably because of the new position my back is in now.
There’s not a lot that I do. 2 or 3 times a day, I walk a bit and sometimes I go sit in my wheelchair and cross around the hosptial, even though the hospital is not interesting at all. The rest of my time I spend watching youtube videos, series and movies and reading youtuber books and things on wattpad. I really love reading fanfictions, mostly Tronnor, Larry Stylinson and Clexa. The book I’m currently reading is The Amazing Book Is Not On Fire by Dan Howell and Phil Lester. I also got I Hate Myselfie by Shane Dawson, which will be the next I’m gonna read.
I’ve watched the movies Zombieland and The Imitation Game on the Picu, and Judas Kiss a few days ago. The series I’ve been watching are Fear The Walking Dead and The 100.
So there is a lot to do, but eventually it really gets boring.
Some of my friends have visited me this weekend and I really enjoyed it, I really missed them. One of those friends (itsnotalwaysfun on wordpress), is also going to visit me tomorrow. I’m happy about that, because my parents won’t come until tomorrow evening.
This friend also gave me this little bag with about 17 envelopes, and I need to open one each day, until my birthday (which is May the 4th) with a letter and sometimes pictures in it. I really appreciate that she did that for me, there are new fun ones every day and I love it.
I don’t have the best view from this room, but I do like watching the little sky and sunshine I can see from my bed. And there’s this extreme cool zebra on the window look:20160427_203504

Yesterday they made me a brace that I need to wear for three months to make sure that my spine recovers good. But everyone knows I really really hate braces, so I don’t really want to wear it. This one doesn’t feel annoying around my body, but I also need to wear it when it’s hot and again, there are so many things I can’t wear with it…
This is what it looks like:


Well, I think I’m just gonna go back watching all Clexa moments because why not *cry* 

See you laterrr xx

Legally stoned?

Thursday April 21, 2016
So it’s my 5th day in the hospital (I’m here since sunday night). My surgery was on monday and I feel pretty okay. Before the surgery that started around 8 a.m., I showered and braided my hair and I was ready to go, I didn’t eat anything because I had to be sober for the surgery.
I do remember bits and pieces from just before the surgery. For example, they tried to give me sleeping stuff in my right hand, but they couldn’t find a good vein and it really hurt, even though I luckily don’t remember that pain. But apparently my sister had felt a sharp pain in her right hand at that moment, which is kind of funny actually.
The narcosis stuff felt really weird when they put it in, all my limbs became really heavy, and in a few seconds, I was in a deep sleep.
After the surgery, I woke up on the Picu (the intensive care for children under 18), my face was really swollen because I had been laying on my stomach for 5.5 hours, and I couldn’t open my right eye. I was acting a bit weird because of the painkillers and said things like “I can legally get stoned now, isn’t that great” and I also kept forgetting little things, like if my parents had already put lipbalm on my lips.
The surgery went great, it took less time than expected, I didn’t lose a lot of blood, and there was no nerve damage.
The first night after the surgery wasn’t great, I couldn’t sleep very well and my back hurt. I did have a pump for painkillers, but I felt like I was pushing on that button too often, so I didn’t use it that much.

Saturday april 23, 2016
So it’s been a few days since I wrote. I’m not on the intensive care anymore, on thursday they had a free bed on the kid section, so that’s where I am now. I feel okay, my back doesn’t hurt that much but my right hip does from the constant laying and sitting, and there’s no position that really works. All the infusions are out of my hand so also the pump for the painkillers, but I take them  as pills now. I can’t really sleep very well because of my back and hip, and I can ask them for painkillers but they don’t work for my hip, so during daytime, I’m also pretty tired.
On thursday I came out of my bed for the first time, to go to the toilet. I went pretty good and it didn’t hurt too much, and it’s getting easier every time. I can’t stand or walk myself yet.
Yesterday I sat in my wheelchair and drove around a bit. It feels really weird because I cannot bend my back, so everything is a lot more difficult. Simple things that were so easy before, are now not so easy anymore, but I just need to learn new ways to do those things again. I hope everything will get easier soon.
The doctors have taken a few pictures of my back but I will make a post with pictures before and after the surgery later.


A last healthcheck

Friday April 15, 2016

Hii again,
so today I have an extra check at the hospital to see if I’m healthy enough for the surgery, I really hope I am. Even though I’m really stressed, I also want it to happen now, because I know that’s the best for me.

I’m in this exchange program with a school from Istanbul, and they arrived yesterday. Today they are going to a museum and make a boat trip, but I can’t come with them since I need to go to the hospital :(.
I was there in february and we stayed in guest families, I loved it. My exchange partner is really sweet and they had a really nice house. The first day there didn’t go too well, I threw up because of food poisoning *yaayyy*, the days after that I couldn’t eat very well but I did feel good so luckily didn’t miss anything of the program. Tomorrow we are going to Amsterdam, which I am really excited for, and on sunday I am probably going to the city with my exchange partner and a few other people.
On sunday evening I already need to go to the hospital, because the surgery is on monday morning. 4 Of my friends are going to visit me later that week, and my exchange partner and teacher are also going to visit me. I’m really looking forward to their visits.
I will make a bigger blogpost about the whole exchange with pictures later.

I actually don’t really know what they are going to do today in the hospital, but I’ll be fine.

Thursday April 21, 2016

So I wanted to write about the healthcheck the same day, but I forgot to do that and this weekend was very busy with the Turkish exchange people, and on monday was my surgery. So I need to backtrack again. The healthcheck took a long time even though they didn’t do a lot, this was because I needed to see doctors who were working at that moment, so I had to wait until they had some free time. They went with me through the whole surgery and recovery, and showed me where I was going to stay. They also took some blood but I got really scared, since the last time someone took my blood, the nurse couldn’t find a good vein, it really hurt and I almsot got unconscious, and she didn’t do anything about it. Which was really freaking dumb. But this time it went great, mostly because I was watching a video of Phil Lester. 
But they didn’t take enough blood to test so on sunday, they needed to get some more blood *ugh I hate needles*

That was about it for the healthcheck, in my next post, I am going to update about the first days in the hospital.


My history

I don’t really know where to start, so I’m going to start here:
I have scoliosis and I’m having the surgery for it in less than two weeks (April 18).
Since I’m already pretty late in the whole process, I’m gonna backtrack a little bit, not so little actually. Here is  the full story.
When I was four, the teachers at my school told my parents that I walked a little odd, I also couldn’t walk the stairs. So my parents went with me to a doctor. I was then sent to an academic hospital where I had to do some tests with the conclusion: SMA type 3. It’s an acronym for Spinal Muscular Atrofies and it is a muscle disease. Type 3 is one of the “best” ones (meaning I can walk and can become as old as the average person).
It affects about 1 in 6000 to 1 in 10000 people, and there is no medicine for it.
I actually don’t really do any research in it, I don’t want to know what is going to happen, I will just let everything come to me.
I have less muscle tissue so I’m very skinny, and my muscles are pretty weak. I can’t run or jump and getting up from the floor is really hard.
Since my muscles aren’t really strong, I have scoliosis, which is a curve in my back. In my case it’s the s-shaped one:

I got a boston brace for this when I was eleven. That thing was horrible, the thing I hated the most in this world. I could barely walk with it, it constantly hurt, it was very sweaty and I couldn’t wear anything strapless, and I could only tanktops with a cardigan, otherwise you would see a part of the brace.
This is a boston brace:
img-thing 2
I had to make X-ray photos twice a year to see if the brace worked properly, but the curve only got bigger. So last september the doctors decided I need to have surgery, the surgery is called a spinal fusion, if you want to look up more information.
If I don’t get the surgery, my organs are going to be under a lot of pressure, I will have a lot of pain and I’m gonna walk crooked.
Basically what they are going to do is put two long rods in my back and secure it with screws to straighten it. They are also going to kind of chop the parts off of the vertebra that you can feel on your back,  and put them between them so it will grow naturally.
This part:
vertebra yeah

This system (and then a lot longer) is going to be put in my back.

This whole thing is going to take about 6 hours, so it’s a pretty big surgery and then I need to stay in the hospital for two weeks. In the hospital, I’m going to get a lot (safe amount don’t worry) of painkillers, so I will probably be half drunk-ish there, I wonder how that is going to be and what I’m going to talk about with people. Ï’m also not allowed to shower for a few weeks, so the nurses will have to wash me, and I’m really not looking forward to that.

Since the curve is gonna be straightened, my back will get a few centimetres longer, so that’s great.

The main reason for this blog:
-I want to show you how it is to live with something like this, how people like me are just normal people but also how we aren’t. And to let you understand people like me.

What you can expect from this blog:
-I don’t know if I am gonna make some sort of schedule  to post every week or something, I think I will just write whenever I feel like.
-I am not only going to write about my muscle disease and all that, I also want to just talk about the things I really love and vacations and stuff.
-I am going to try to post regularly when I’m in the hospital and afterwards, but I don’t know if I will feel good enough for that.

See you soon (I think)