A Part Of My Life...

Because I had the first three periods off I had to go to the Gym for my physiotherapy. I have to be there at 8 in the morning. So getting up early and I already was pretty ‘Brak’ because Tuesday night I went to Grease the musical, so I got in bed quite late. I was still half sleeping when I got downstairs. My mom asked me what classes I got, Maths, French, German and English tto I answered. Why? She explained that all lessons after 5th where ‘facculatief’ so you did not have to go to them. Then she said that the wind was blowing so hard that it was actually dangerous to go on my bike all the way to school. So we came to the conclusion that I will go to the gym and after that just stay home and study for the test week.

When I was at the gym an old man came to me and asked why I was here. I answered to him that I had rheumatism. ‘But isn’t it too early for that?’ Well normally it is but I am supposed to me the lucky kid of 1000 other kids who has the youth form. The man told me he also has rheumatism for 40 years now. I felt quite sorry for him I told him that but he was like:
‘Do not bother I am old enough and have done a lot of fun stuff in my life, I still can do that. It is a shame that such a young girl has it, there are so many things you still have to do and that you have Rheumatism might make you that you cannot do that.’ I only nodded it was true. ‘ But I still can get over it.’ I said to the man. ‘It will only take some years.’ The man whished me good luck in my life.

This was actually the first time I talked to someone with Rheumatism in person, I mean I know no one here who has it too, and certainly not teenagers.

Over one year ago the doctor said to me that I had some form of youth rheumatism. I thought it would shock me, but it didn’t. I had no idea what to expect from it, the only thing I wanted was to get over this 24/7 pain in my hands. Soon after the doctor had told me the diagnose I got my medicine. They did not work and the pain got into my whole body. The doctor said that there were infections in the joints in my hands, hips, shoulders, elbows and knees. There were also some weird spots on my feet. Because I could not even bend my wrists in a 90 degrees angle the doctor thought that these joints were infected earlier. I was shocked to hear that this was in my whole body. The doctor was talking about getting a special pen to write with, putting my schoolbag at the back of my bike and maybe even get a laptop to work on at school. I also had to keep al my joints warm. My mom bought me ‘armwarmers’ I had to wear them the whole day, inside as well as outside. I didn’t like these things they just did not match my outfits and it sucked while I was writing. It only took two weeks and I did not wear them anymore.

I also got new medicine; I am still taking these ones. It is painkillers and they are supposed to make the infections in my wrist less. The side effects were horrible, I was dull al day long could not pay attention at school and my reactive power was like very bad. The first three weeks I did not dare to cycle alone because like the second day I was almost to slow to brake on time.

I also could not drink alcohol with the medicine. I tried one time and I got just so sick, dizzy and like the whole package. I found this so sucking because all of my friends were like experimenting with alcohol. Getting drunk and at parties everyone was drinking alcohol and I tried to find fun in other things.

Sometimes I saw that people did not understood what was going on with me, and sometimes I did not even know what was going on with me. Always when I got out of school I was exhausted everything hurt, especially my knees, hips and shoulders. Sometimes I got home and started crying on my bed. I remember one time that it was raining and my jeans was soaked and my gloves too. I still had to cycle two kilometers when the everyday pain got worse. I was screaming because it felt like someone was hitting on my knees and hips with an ice-cold hammer. My face was cold and wet of the rain, I felt that warm tears were rolling down on my cheeks. Somehow I managed to get home, thank god my mom was home. When I got home I collapsed and started crying real hard. ‘Why me mom?’ I cried, ‘One at the thousand kids get it mom! Why me!?’ my mom did not answer the question she just cared for me and stayed with me.

Sometimes I still have that thought, Why me? I still cry over it. But then I think, okay this happened to me I have to live with it. How hard it is. Sometimes when I tell people that I have Rheumatism they look weird at me and ask me if that isn’t that disease old people get? And sometimes when I tell them they only say ‘oh’ I think not much people know what it means to have it. You live everyday with pain, from the time you wake up until you go to sleep at night and then you are exhausted.

The worse time is when it is cold and wet, even when you are dressed warm you still have pain. The wet cold is getting through all your clothes. It is horrific.

When the summer was over I got new medicine, which would lead to 5 pills per day. These medicines would also make me duller but I could also have weird mood changes. I did not tell my friends about this, because it could sound like a weird excuse. Actually I do not have a lot of trouble with these supposed ‘mood changes’ only when the pain gets worse.

The last three months were like the worse I have ever had, my doctor suggested to take one pill less. I was happy to hear that because I hated to take all this chemical stuff but after two weeks the pain got worse. First I thought it was because of the weather that was getting colder but much later I came to the conclusion that it was because of the one pill I was not taking.

When I am cycling I have strong pains in my left hip. When I get at school after the exhausting cycle my shoulders hurt when I have to walk to the classroom. When it is cold and wet my fingers hurt and I can barely move them. When I get back to school on the bike my hips and knees hurt. At home my shoulders, hands and elbows hurt when I am doing homework. While working my hands hurt.

This is like the ‘schedule’ of pain of every day. I am trying to do as much as every ordinary teenager would do. Since 4 months I work and I am enjoying it, not everyone knows that I have Rheumatism, but I do not want them to think that I am weak.

A good friend of me said to me like 5 months ago that this rheumatism has embittered me. I think it kind of has, but not that big. Sometimes I look at this life quite different then I did one year ago. I have also changed during the year, I came more interested in paganism, and I started listening quite different music. Sometime is seek refuge in the music, it has gotten very important to me. Maybe I have changed the way I look too, some friends say to me I have. ‘You have gotten more into a Rocker.’ Someone said to me once. But when you have this you have to change your way of living and with it you change yourself. All I can say now is that I hope I will get over it soon because like the old man said: ‘There are so many things I still have to do.’

I do not know why I am telling you this, it was just such a relief. First I was thinking not to post it because it was quite personal, and because I cried when I wrote some stuff down. But this blog is about my life and unfortunately rheumatism has become a part of my life.

Greenthings

Music: Three Days Grace – Pain
Quote: Do not think about the things you can’t do, but about the things you can do. (Steve (OMNIA) has sent this to me once)

Welcome To NH Gangstertown, I Love This City...

Heej long time no see! The Kerstvakantie was so friggin boring sometimes. Kerstbal was cool, accept for the dj who was quite shitty and played some shit music. During Kerstbal I got sick an my throat hurt so bad because of all the smoke around there.

Christmas was cool, just had dinner with my family, Wednesday the 27th I went to Apassionata, a horse show. It was very spectacular and fun together with Esteli and Mirte. On the 29th in went to the ‘borrel’ of elaina and Baay. I ate so much that I almost exploded, but the borrel was fun and the people too. Baay got a tie from Kirsten and Sasha with reindeers on it and when you pressed a button it started playing some Christmas song. Baay promised he would wear it to ThiMUN.

With new-year I didn’t do much, Jesse had a plan to go to the skatepark because there was going to be a big fire, but the day before some dudes already put it on. But also the weather was shitty, with rain and a lot of wind. So lisa and I just walked around and ate and drink something. Later we went to Fleur because it was her birthday and then we again walked around in the neighbourhood. Actually I did not remember a lot of new-year, only that I did not feel that well. And that was not because I drank too much alcohol.

Last three days my cousin was here, we went to Leiden to go shopping, he bought new shoes and I bought a T-shirt. After that we went to Eragon. Apart from everyone who said it was such a bad movie, I liked it. Yesterday we went to Amsterdam, I bought a very, very fine Gsus dress. It is black with on the sleeve some glittery thingie, and it has a belt. It is sooooo cool and I absolutely adore it. I also bought a bag with AMSTERDAM written on it and a Duckie with a crown.

Now I am going to tell you a nice story about Noord Hofland Gangstertown. I live in the nice village of Voorschoten in the area called Noord Hofland. Apparently some guys think this area is like the ghetto and made some gangstersgroups, which every once in a while fight with each other. It does not really bother me, everyone knows these dudes smoke weed, steal, and carry knives with them. Just ignore them and you are fine.
On Wednesday evening, Claudia, Lars, Kjeld and I were talking in front of the C1000 after work. Claudia tried to get her keys back from Lars cus he ‘stole’ them from her. Kjeld and I were standing like 8 meters away from it just talking about random stuff. Then two guys on a bike came by (I am not going to say that they both were black and dressed up like wannabe gangsters, (dutch word = Sjonnies)) well they were looking all weird at us and stuff and when they came by Clau and Lars they started screaming stuff at them. Well Lars said something to a guy with a weird hat and he was all like: Shut up or ill put a knife between your ribs. Lars thought he was bluffing and said something like yeah alright. Well the dude made a great fuss over it and all but eventually he and the other dude left. After like 5 minutes the dudes came back with 3 more! That was like 5 against 4 and we were with two girls. They started threatening Lars and one big guy was like don’t give a big mouth to him or I’ll come buy with my knife. Lars said something like: Okay cool I wont. But still he gave him a head-butt. Claudia was screaming and said that the guys should piss off and act normal. The guys called her a Wiswijf but she didn’t care. Meanwhile some dudes came to kjeld and me, Kjeld was getting his phone out of his pocket and one guy all freaked out and said: What are you doing? Are you getting a knife? And then he explained that he was just getting his phone. I said to the guy that he just had to go and not making such a big fuss out of it. He said that I had to like shut my mouth . Well then I went to Lars and Claudia to see what was going on, but then I turned around and saw that three or two guys were picking on Kjeld. They also gave him a head-butt. I went to stand next to Kjeld and just hold him. Because kjeld had called his father the Sjonnies all freaked out. Thne Claudia said to me that she was going to call the police. The sjonnies got scared and left. But then I realised that I had seen this guys before, walking around in my neighbourhood like every day. On that moment I really got scared and did not dare to walk home all by myself. After 2 minutes lars and kjeld their dad came in the car and a minute later their mother. Kjeld got into the car with his dad. Lars said he would get Claudia home and their mother brought me home.

It was weird that I was not scared at the moment and that only half can remember what the guys said to me or the others. I don’t even know if they threatened me too. The only thing I thought of was just stay calm and make sure no one of us gets hurt, maybe that is why I held Kjeld his arm all the time. When I got home I was a bit shaky but it was over after like 5 minutes.
Really I am so glad to live in NoordHofland Gangstertown. Maybe I am just a Coward but I am really shaky for the moment I will meet one of those Sjonnies again, and certainly when I walk alone in the dark. Lars said he is carrying a knife with him now.
Well Michiel said he knew one of the guys and they are going to apologize. That’s cool, because not feeling quite safe in your own neighbourhood where you lived for like 12 years sucks.

Ah Kerstvakantie is almost over and I haven’t done shit for my Proefwerkweek, and my reso got erased =S so I have to start all over again!
Well byee byee Love you all! CU @ the next post.

Quote: ‘Wooptiedoo I got Chocolate chip cookies!’
Music: Incubus – Drive