I really want to thank you!

[Kelzy]

OMG, I just had tears I know exactly what you mean about the music. When I was sick with pneumonia, all I wanted was to listen to Bon Jovi. They're the band that pulled me through countless times.. (But, I love U2 just as much now. Bono is amazing.)

Once, whilst under anesthetic, I sang Bon Jovi songs

I think the wheelchair is a wonderful idea. It should always be about Quality of Life. You could make it fun and exciting. Paint it and decorate it..

[Satya82]

I believe in staying positive too. I really believe that is one of the most important things I do.

 

Arrgghhh That's incredible!! I never thought it possible! I must bow to your awesome spleen growing skills

 

OH!! watch this. I crack up laughing every time I watch it! Make sure you have the sound turned on!

 

I sing too! Some days pretty good - other days hahahahaaa!!!

I love that you hum!! It makes me think of monks doing their mantras..

om mani padme hum..

And you take care too.

 

Hey Kelzy! LOL, thank you for the YouTube link. That was hilarious (and a little gross). And I'm very honored that you're impressed with my spleen-growing skills. You're the first person to say so. Staying positive is REALLY important. And singing helps me stay positive. Mika helps me stay positive. Funny you mentioned humming reminded you of monks. I take yoga classes (and went through a teacher training program) and we chant. It's a lot like music for me, very relaxing.

 

I am quite happy now. My best friend came along to see me, just like yesterday.

 

One of the nurses asked the hospital radio to play Sometimes you can't make it on your own, for me. She knew I loved U2 and she knew how much it would meant to me. When listening that song, all my pain and worries came out. I can't remember crying so hard and intense before, Bono's pain became my pain. At least so it felt to me.... I can't even describe how important U2 still is for me.

 

So glad you could spend some time with your friend, Anouk! That's an amazing story about U2 and how much their music means to you. I'm a HUGE U2 fan, and seeing them in concert was so magical. The way the audience was so tuned in to everything Bono said, and the way we all sang every lyric--sometimes Bono let only the audience sing--and it gave me goosebumps. Music is so powerful. It can bring people together, help you deal with pain, and be a comfort. I know U2's music has been that way for me, and Hanson's. Music has helped me through a lot of crazy times, including my health issues. It's an escape as well, time for you to just let the words and music carry you away, and not think about anything else. And of course through Mika's music, we all found the MFC!

 

When I was sick with pneumonia, all I wanted was to listen to Bon Jovi. They're the band that pulled me through countless times.. (But, I love U2 just as much now. Bono is amazing.)

Once, whilst under anesthetic, I sang Bon Jovi songs

I think the wheelchair is a wonderful idea. It should always be about Quality of Life. You could make it fun and exciting. Paint it and decorate it.

 

Awww, Bon Jovi was one of the first CDs I ever bought. "Whoa-ah, we're halfway there, WHOA-AH livin' on a prayer!" Ha, love it! And you sang their songs while under anesthesia? That's dedication! I love that we each have our musicians and bands that have been there for us. And now we all have Mika. I can't imagine a world without music.

 

And I agree with Kelzy, Anouk. If you need a wheelchair and it'll help you get around and be able to do more, than by all means do it. I know it's not ideal, especially when you're younger (how old are you by the way?) but it'll help you keep your energy up.

[Anouk]

Hey Kelzy

So glad you could spend some time with your friend, Anouk! That's an amazing story about U2 and how much their music means to you. I'm a HUGE U2 fan, and seeing them in concert was so magical. The way the audience was so tuned in to everything Bono said, and the way we all sang every lyric--sometimes Bono let only the audience sing--and it gave me goosebumps. Music is so powerful. It can bring people together, help you deal with pain, and be a comfort. I know U2's music has been that way for me, and Hanson's. Music has helped me through a lot of crazy times, including my health issues. It's an escape as well, time for you to just let the words and music carry you away, and not think about anything else. And of course through Mika's music, we all found the MFC!

 

 

 

Awww, Bon Jovi was one of the first CDs I ever bought. "Whoa-ah, we're halfway there, WHOA-AH livin' on a prayer!" Ha, love it! And you sang their songs while under anesthesia? That's dedication! I love that we each have our musicians and bands that have been there for us. And now we all have Mika. I can't imagine a world without music.

 

And I agree with Kelzy, Anouk. If you need a wheelchair and it'll help you get around and be able to do more, than by all means do it. I know it's not ideal, especially when you're younger (how old are you by the way?) but it'll help you keep your energy up.

 

Hi dear!

Haven't been here for a while.

To start with your question, I'm 26. Not really young, but these have to be your glory years. Buying first house, getting married, getting children....My world is standing still for years now.And children? No way, that's out of question.....

I'm safely back at home, where I belong. Instead of getting rid off some medication I got two new drugs to take, and again I need Nutridrink, which is energy-enriched (or something). I'm losing weight and still have trouble to eat what I need to eat. That's a hard part too, when you've got a chronic disease like we have, you have to make sure you take enought proteins and stuff. But I just can't eat. Not hungry, some days only the smell of or thougts about food can make me sick and puking.....So I have to take two cans of Nutridrink everyday. But that is too much, I take one.

I told the physicians I had oedema, but they said it was nothing important, nothing should be done. But in less than one month I gained 11kg I felt horrible because of that. So I asked them to prescribe something against it and finally they did. Already lost 6,5kg in less than one week.....So it WAS (or is) oedema......I was right again.....

 

I've had two busy days, yesterday I went to the zoo with mum, we'd planned that months ago and I was looking forward to that, so we decided to go. Havong some fun is also very important! It was great. Yesterdaynight we had a wedding so we got home late. I needed extra morphine there but I just can't say come on, we leave, I'm in pain. I'll take some morphine, make myself comfortable and I stay. It was cosy, but too long.

Today my best friend came over to see me (not the same best friend I wrote about before, I've got two best friends who mean both sooooo much to me) and we had a great time. But now I am broken, physically. I need sleep and tomorrow I'll do nothing at all. Only the things I want to do and which aren't heavy. I don't know if I'm going to work again next week. I just started with working again, but I did too much. Two whole days are too much, I cannot take that now. Maybe later, but now I am going to work for 4 hours max. It sucks, but if that makes me feel better than I need to do it. I need energy for other things too. Working is important and I love it after almost 5 years of doing absolutely nothing, but I'm afraid my body doesn't love it at all.....

 

About the wheelchair: I'm going to use it. Everything that needs to be done for it is done. I'm going to be strong and making it all easier for myself, even if it's not what I wanted. But pain isn't what I want too, and if I'm not going to use that stupid thing I won't make it to the end of Werchter,in that case we'll be home on the second day I guess. Now that would be stpid, and I am not stupid, I will be smart:wink2:

 

How are you doing?

[Satya82]

Hey Anouk!

 

Well, I'm 25 so I understand where you're coming from age-wise. I was in my early 20s when I had all of the surgeries and everything, and that was hard. To not have enough energy to get through the day at age 20? That sucks. I couldn't even make it up a flight of stairs. Now I'm doing better, and have recovered from the surgeries but I sort of feel like I've lost those years I wasn't feeling well, and now I'm trying to figure out what to do with my life. My friends are (mostly) settled into "real" jobs, getting married, thinking about kids...and I'm still living with my parents and trying to find a better-paying job. It's...weird.

 

I'm glad you're home and were able to go out and have some fun! And I think it's definitely a good idea to get the wheelchair. I know it's not fun to think of being 26 and in a wheelchair, but it'll help you enjoy life more--and see Mika in concert!

 

Take it easy--stay out of the hospital! --and I hope eating becomes easier for you. Eat what you can, and keep taking those Nutridrinks (or whatever they are).

 

I'm thinking of you!

[Anouk]

Hey Anouk!

 

Well, I'm 25 so I understand where you're coming from age-wise. I was in my early 20s when I had all of the surgeries and everything, and that was hard. To not have enough energy to get through the day at age 20? That sucks. I couldn't even make it up a flight of stairs. Now I'm doing better, and have recovered from the surgeries but I sort of feel like I've lost those years I wasn't feeling well, and now I'm trying to figure out what to do with my life. My friends are (mostly) settled into "real" jobs, getting married, thinking about kids...and I'm still living with my parents and trying to find a better-paying job. It's...weird.

 

I'm glad you're home and were able to go out and have some fun! And I think it's definitely a good idea to get the wheelchair. I know it's not fun to think of being 26 and in a wheelchair, but it'll help you enjoy life more--and see Mika in concert!

 

Take it easy--stay out of the hospital! --and I hope eating becomes easier for you. Eat what you can, and keep taking those Nutridrinks (or whatever they are).

 

I'm thinking of you!

 

Wow! You perfectly know what I'm going through, our story is very alike!! When they found out about the sarcoidosis I was 22. At that time I was soooo extremely exhausted that when I woke up and put on normal clothes and stuff, I was so tired again that I had to sleep another two hours to recover from that. Or, when I did the dishwasher, I was so tired that I did it in two times. And my physician kept on telling me that it was a mental problem, I was just laze, when she did so less as I did she would get lazy too. I swear, I wanted to kill her for those words. They hurted me. She told me everything was fine and I had to get a normal life and stuff and everything would work out well. Now way. In the spring of 2004 I got so ill, lost so much weight (over 20kgs in three months) and there was nothing in my blood that had a normal value. And the story with the spleen started. It was that time when it started to grow. In fact I am graceful for that, because it was the reason I visited my 'home-physician', he wasn't there but there was another one and he didn't trust my story and symptoms at all and told me to visit the ER when that spleen would hurt or something. And that was the same evening....I went to the emergency room and didn't come out the hospital for over 8 weeks.....

 

I am still living with my parents too. I cannot make it on my own. Got a bf for 8,5 years but he works and cannot do all the cleaning and stuff too. But it's getting time for me to get our own house. I'll make it, however. I was waiting for better times but they won't come. I have to deal with this stuff for the rest of my life so waiting isn't the right thing to do. I am so tired of people that don't understand you and then telling you what you have to do. Or things like "Everyone's sometimes very tired, just take your rest" They don't know how it feels if you're sleeping over 12 hours a day and still being tired, exhausted. Feeling like everything's too much. I haven't had work for over 4 years. I'm 100% disapproved, which means that I cannot earn my own money, I cannot work. But it makes me feel so useless, worthless.... I want to do something too. So I just started a new education. Even if it's for only one day a week, or maybe two (but in that case not two whole days, I have to split it up then) I would love to be part of the working society again! I was a nurse, but that's too dangerous with all bacterias.

 

I'll write more later. It's already half past two here and I need sleep, although I can't sleep. I'm going to give it another try....

See you later!!

[Anouk]

After a few weeks of not being here, or not that much, I am back. The reason for being offline is that I am in hospital again, from the 9th of august on. It started with a fever so we went to the ER in the hospital of my city, but it's a small hospital (even if they think they're big and soooo professional...) and I need University Hospitals with my kind of complicated problems. After more than one week they brought me to the University Hospital of Rotterdam. This one was new for me, I am cured in Leiden and Maastricht, but they're both quite far from home. Rotterdam takes only 20 minutes so it's better.

 

So I came here and they started the diagnose all over again. The examined me from top till toes and there is a lot wrong with me. More than I wish and more than I expected.... I was suffering from sarcoïdosis, an auto-immune disease which causes granulomateus inflammatories in your body. Here is a link if you want to know more about it: http://en.wikipedia.org/wiki/Sarcoidosis

I have also CVID, which is Common Variable Immuno Deficiency, so my immunosystem doesn't work properly. You can read about that here if you want: http://en.wikipedia.org/wiki/CVID.

NOW, in this hospital I've been told that it isn't exactly sarcoidosis, but it's a granolomatous infection caused by the CVID....Don't know if I say this right, it is already hard to explain in Dutch, but if you want to know something just ask and I'll try to do my best to answer.

In fact the result is the same.My body is being destroyed by all those inflammatories and there is not much they can do about it. They have changed a lot in my prescriptions and all those changes make me feel even worse for now. We hope it'll be better within a week or something, but it's hard now, I'm in a lot of pain and I feel sooooo exhausted...

 

It was a hard week, the first week in Rotterdam. In February I started Humira, a new medicin. It worked out great!! If you would have told me a year ago that I would be working for at least one day a week in June I would have thought you're crazy. But I DO work, that means; I did.... I really thought things were turning out great!! I even started dreaming about becoming a mother........Only one little part of me, and I knew it would be hard, but now it''s all over again it still hurts. Last week I felt completely lost, broken and down. Didn't know what to do with my feelings, I got such a negative feeling over me, like what is it all worth fighting for? Everytime I fight, and really hard, but for what? In the end everything goes wrong...I decided to talk with a special person for that. I had to, I didn't recognize myself anymore......

 

Last week I got the shock of my life. I seem to suffer from Pulmonary Hypertension (another link: http://en.wikipedia.org/wiki/Pulmonary_hypertension), which is incurable. So it means I don't have a chronic disease anymore, but an incurable, with a bad prognosis..... I didn't expect that at ALL! It must be wrong, I am not going to die from such a stupid disease..... And I am scared, I don't know what's happening with me, if there is something to make it all easier for me....They have to do some really nasty examinations to make a final conclusion and to decide what we have do. I cannot live with this insecureness.... I want to know what's happening and I am ready to fight back, even harder this time....But damn, it's hard. I cry a lot those days. Vacation is over, I am on my own all day, till BF and parents are done with work. I have too much time on my hands and that makes that I am thinking about things I don't want to.....Life sux, suck it back.......

 

So now you can read why I am not so quite often online those days...I'll try to pick it up again to make some fun with you all, I've said that before but I still mean it: Joining MFC is the best thing I did this year!!

 

This is it for now, I've ttried keep it short and quite easy but these are hard days and there is a lot changing aready. If you have a question or you want to know more about something; Just ask, and I'll answer:thumb_yello:

[foalbaby14]

OMG:tears:

 

i hope you are ok!!!! i wish i could send you a present to make you feel better, even though i dont know you that well it still makes me sad to know someone is so ill:tears:

 

 

[I <3 MIKA!!!]

OMG ANOUK!!!!!!! that made me cry! I AM NOT MAKING THAT UP AT ALL! as i type this i have tears in my eyes! i really really really do hope you get better!!!!! we are all supporting you!

[Anouk]

OMG:tears:

 

i hope you are ok!!!! i wish i could send you a present to make you feel better, even though i dont know you that well it still makes me sad to know someone is so ill:tears:

 

 

 

OMG ANOUK!!!!!!! that made me cry! I AM NOT MAKING THAT UP AT ALL! as i type this i have tears in my eyes! i really really really do hope you get better!!!!! we are all supporting you!

 

Thank you both so much, I really appreciate what you wrote and it helps a lot to know that people do think of you, even if they don't know you for real. This is such a nice place and I'll get a lot of support.

 

[I <3 MIKA!!!]

Thank you both so much, I really appreciate what you wrote and it helps a lot to know that people do think of you, even if they don't know you for real. This is such a nice place and I'll get a lot of support.

 

 

i am glad that the mfc is helping! whenever i am feeling upset i always come here cuz i know there is always someone on here that can make me feel better!

[sienna]

Oh Anouk, I didn't like to hear about this new diagnose at all!

It doesn’t sound good.

But there are a few good things after all:

You are at a big hospital with many resources.

Even if it is hard to get a diagnose like that it must be better to know than stumbling in the dark.

You are still young and the research is developing all the time.

You have your family and you have us.

MFC is a really crazy place many times but I love it too and it is amazing how you can make friends with people all over the world like this. It never stops to amaze me.

Big hug, thinking about you a lot!

Please pop in again as soon as you can!

[Laurel]

I don't even know really what to type to that.... I was wondering yesterday how you were as hadn't seen you for awhile.... Kind of made me tear up as well reading that.... just know that we're here for you always if you want to talk.....

[lindemfc]

Hope you feel better soon anouk

 

maare, stond ik er niet ook bij op de kaart?

[Wendi]

I noticed you had gone from MG thread for long periods of time.

I am sorry you have had such a terrible time getting the new

diagnosis - and that they only had more bad news for you!!

There will always be someone here to chat!! It must be a long

lonely, and worrying day - everyday! Sending hugs

[Guest]

I already knew .. but reading it like this ..

You know I'm always there for you, even though I'm not big with words ..

 

 

Hope you feel better soon anouk

 

maare, stond ik er niet ook bij op de kaart?

 

Die kaart in het begin is een andere kaart, die hebben we gestuurd toen ze de vorige keer in het ziekenhuis lag, dus het is niet de eftelingkaart

[lindemfc]

I already knew .. but reading it like this ..

You know I'm always there for you, even though I'm not big with words ..

 

 

 

 

Die kaart in het begin is een andere kaart, die hebben we gestuurd toen ze de vorige keer in het ziekenhuis lag, dus het is niet de eftelingkaart

 

oow, oke skjusmie...ik had al zo'n voorgevoel. heeft ze de andere kaart + lolly al wel gekregen dat jij weet?

[Guest]

oow, oke skjusmie...ik had al zo'n voorgevoel. heeft ze de andere kaart + lolly al wel gekregen dat jij weet?

 

Die heeft ze inderdaad gehad ja

(denk ik toch .. ofwel was ze over wat anders bezig )

[Anouk]

Oh Anouk, I didn't like to hear about this new diagnose at all!

It doesn’t sound good.

But there are a few good things after all:

You are at a big hospital with many resources.

Even if it is hard to get a diagnose like that it must be better to know than stumbling in the dark.

You are still young and the research is developing all the time.

You have your family and you have us.

MFC is a really crazy place many times but I love it too and it is amazing how you can make friends with people all over the world like this. It never stops to amaze me.

Big hug, thinking about you a lot!

Please pop in again as soon as you can!

 

Hi dear, I really love your comment, cause it's true and it's the way I feel myself too.

That diagnose sucks, but they have to do a right sided cardiac catheterization, to meassure the pressure in my lungvenes. I have to wait to hear what their plans are.

A not so nice part is the development of the research. Pulmonary Hypertension is very rare, only about 20 or 30 new patients a year in The Netherlands. It isn't very interesting for research, the population of patients is too small. There are some new medicins, but also only medicins to make you more comfortable, they can't cure either....

 

My parents, bf and friends are gold for me. They are the only reason to keep on fighting, they make my life complete and colorful. I wouldn't make it without them. And now we're talking about friends; I feel so welcome here, even if we don't know each other for real, we're one big family. Where everyone can be herself, and that's great. I love you all, internet is more important for me ow I've joined MFC....

 

For now I don't have any news, but I'll keep you posted:wink2:

[Anouk]

Hope you feel better soon anouk

 

maare, stond ik er niet ook bij op de kaart?

 

Haai Linde, jij stond er ook bij hoor maar dat was inderdaad een andere kaart. Deze thread was oud, ik heb hem gisteren opgeduikeld omdat ik een nieuwe thread openen zo stom vond....

 

Ik heb de nieuwe kaart vorige week gekregen en had daar in de Dutch voor bedankt, maar niet zo heel uitgebreid want ik ben vorige week amper hiergeweest. Zat echt aan de grond vorige week en was even met andere dingen bezig dan MFC. Maar die kaart kwam dus wel op een goed moment, kon ik erg goed gebruiken:wub2: Jullie zijn lief, vond het ook tof dat er wat fotootjes bijzaten. Jullie staan gezellie met zn allen op mijn nachtkasje:thumb_yello:

[Naectegale]

Hi Anouk

 

We haven't met before - I'm quite new to posting, but have been reading the forum for a while, so followed your story in the Mikagasmics thread.

 

I've always admired your positivity in that thread - you show immense courage in dealing with your illness and manage to keep your sense of humour in spite of everything.

 

I sympathise with what you are going through - medical procedures aren't pleasant, hospital is very dull and the uncertainty of doctors is very distressing

 

Best wishes

 

xxN

[violet_sky]

Anouk! Shame on me, as I am not reading the Mikagasmic thread a lot, I didn't notice rightaway that you were missing

Hospital for three weeks again? Life's not very fair, is it? If today was a good day, nobody can guarantee that tomorrow will be a good day again. But it also goes the other way round and that's the beauty of it. You're such a strong woman and reading how you deal with your disease and all the crap that comes with it, but never let it bend or break you, makes me really look up to you.

Being the wimp and pessimist I am, I will gladly take a leaf out of your book any day of the week.

I've read a bit on the wikipedia entry about PH and I know, figures can look drastic. But no shadow without light, look, even though the group of affected people is not a large one, hence has probably no huge lobby to make sure developments in research are reached as fast as they could, there is a development already. In the 80s, the untreated median survival was 2-3 years from time of diagnosis and is now expected to go up to 10 years in the near future. Plenty of time for further improving of treatment. Your time.

Besides, none of those figures is ever written in stone. Have confidence and keep your tail up, as you always do. I think of you. Hope you'll feel a bit better soon.

[Anouk]

Hi Anouk

 

We haven't met before - I'm quite new to posting, but have been reading the forum for a while, so followed your story in the Mikagasmics thread.

 

I've always admired your positivity in that thread - you show immense courage in dealing with your illness and manage to keep your sense of humour in spite of everything.

 

I sympathise with what you are going through - medical procedures aren't pleasant, hospital is very dull and the uncertainty of doctors is very distressing

 

Best wishes

 

xxN

 

Hi and welcome!! Nice to meet you! Seems like I´m quite famous in the mikagasmics:blink:

Thank you for your sweet words. I keep on saying that, but they do help, they make me feel better....

[Anouk]

@ Violet Sky

 

Thank you for your message, I always feel a bit strange when others tell me they're looking up to me because I'm so positive and strong...Last week I was completely down, broken and negative. I wanted to give up at one moment. But no, I can't. When I think at my parents, who are there for me and fighting with me for 26 years already than I can't give up. When I think of my boyfriend, who is with me for over 8 years now and who loves me so much (even though he doesn't say it that way on the moment cause he is scared) I can't stop fighting. He deserves a healthy girl IMO but he stayed, he didn't walk away and choose for me. Now I won't let him down. He stayed with me and now I'll fight even harder for him. We are searching our own place now, had a good talk this weekend (I want my own place for a long time now but he was too scared, didn't say that to me so I thought he was too careless) and now he said yes, he wants to have our own place too. When I think of my friends, who travel through the country to visit me when I'm in hospital, who are there for me when I feel down, never too much to do something for me, always trying to cheer me up....How selfish would it be to stop fighting? What a selfish creature would I be!! No, I'll keep on fighting, whatever it takes. No one can stop me from that. Life is beautiful, if you can enjoy the little things too. Not only go for the big issues, a little flower or a babypet can make my heart melt too, how stupid it may sound (but I'm insane:insane:)

[katydid1994]

Big hugs Anouk, I missed you.

 

Congrats on the moving with bf

[Blue Sky]

Anouk, sending you big hugs and courage to continue fighting this battle. Keep your dreams alive, plan all the things you are going to do when you get out.

 

Love and hugs from Tokyo

xoxox

BS (my unfortunate initials, I know:wink2:)