Anouk Posted June 2, 2008 Author Share Posted June 2, 2008 Aww yay! You received it! Hihi it was fun to do, sorry if not everybody was involved who wanted to, but because of the crash I couldn't send PMs anymore! Ahh the MFC loves you Anouk! X And I love the MFC:wub2: I guess we're meant for each other, it's a perfect match:thumb_yello: Link to comment Share on other sites More sharing options...
Anouk Posted June 2, 2008 Author Share Posted June 2, 2008 Hugs Anouk!!! and hey getting Mika to help is a good idea, we saw the other night that when there is a problem, he's a man with a plan and johnny on the spot. LOL Feel better soon! Thanks my dear, and it would be great if Mika had any ideas how to cure me. He can do that, he can try everything. His magical touch will do it:thumb_yello: (o damn, I can't post without being naughty I'm afraid:boxed:) Link to comment Share on other sites More sharing options...
Wendi Posted June 2, 2008 Share Posted June 2, 2008 Glad you liked the card Anouk - and that it cheered you up!! It was Jose's brilliant idea I got one from my Oldlings a few months back - and its still beside my bed!!! Link to comment Share on other sites More sharing options...
sienna Posted June 2, 2008 Share Posted June 2, 2008 Anouk, get well soon! See you soon in the usual thread, you know which one! Link to comment Share on other sites More sharing options...
RAK1 Posted June 2, 2008 Share Posted June 2, 2008 Hey Anouk, didn't know you weren't well, really need to get around the other threads a bit more and catch up with everyone. I hope you recover soon, and that everything gets better for you. Link to comment Share on other sites More sharing options...
I <3 MIKA!!! Posted June 2, 2008 Share Posted June 2, 2008 hey anouk! i didn know that u werent well FEEL BETTER SWEETY!!!! (that definately sounds corny and stupid coming from someone that is probably younger than u but whatever! lol) listen to mika he cures everything! Link to comment Share on other sites More sharing options...
Anouk Posted June 2, 2008 Author Share Posted June 2, 2008 Anouk, get well soon! See you soon in the usual thread, you know which one!:blush-anim-cl:wub2: I know EXACTLY which one:thumb_yello: Hey Anouk, didn't know you weren't well, really need to get around the other threads a bit more and catch up with everyone. I hope you recover soon, and that everything gets better for you. To be honest, there are only two threads that I'm posting in really frequent. I'm planning to get around the other threads as well, but it's just like I've been catched by those two:blink: hey anouk! i didn know that u werent well FEEL BETTER SWEETY!!!! (that definately sounds corny and stupid coming from someone that is probably younger than u but whatever! lol) listen to mika he cures everything! Thank you hun, it doesn't sound stupid at all:thumb_yello: I'm so glad to be one of you, and glad that I'm able to come online here in hospital too....I would probably die without my daily mikavitamins.... Link to comment Share on other sites More sharing options...
Christine Posted June 2, 2008 Share Posted June 2, 2008 I hope you're feeling better soon Anouk and you end up having a great summer. Let's try for 6 months at least. Link to comment Share on other sites More sharing options...
I <3 MIKA!!! Posted June 2, 2008 Share Posted June 2, 2008 I know EXACTLY which one:thumb_yello: To be honest, there are only two threads that I'm posting in really frequent. I'm planning to get around the other threads as well, but it's just like I've been catched by those two:blink: Thank you hun, it doesn't sound stupid at all:thumb_yello: I'm so glad to be one of you, and glad that I'm able to come online here in hospital too....I would probably die without my daily mikavitamins.... careful you dont overdose on those mikamins (mikavitamins)... on the other hand... Link to comment Share on other sites More sharing options...
Vedrana Posted June 2, 2008 Share Posted June 2, 2008 Good evening Anouk, you've been mentioning that you have some health issues, and I've been wanting to ask you what are you dealing with for months now, but I was afraid it might be too personal, so I never did. So, if I understood correctly, it's sarcoidosis? Anyway, whatever it is I really hope you're going to get rid of it soon, I mean you have to, your contribution to MG thread is absolutely necessary! Link to comment Share on other sites More sharing options...
findingmywords Posted June 2, 2008 Share Posted June 2, 2008 Awww! That's so nice of them! I hope you get better and feel better soon Anouk!! MFC will always be there for MFCers, so we'll always have eachother hahah I wish you the best! Link to comment Share on other sites More sharing options...
Anouk Posted June 2, 2008 Author Share Posted June 2, 2008 I hope you're feeling better soon Anouk and you end up having a great summer. Let's try for 6 months at least. Yes I will try that! I can do it, I CAN!! Good evening Anouk, you've been mentioning that you have some health issues, and I've been wanting to ask you what are you dealing with for months now, but I was afraid it might be too personal, so I never did. So, if I understood correctly, it's sarcoidosis? Anyway, whatever it is I really hope you're going to get rid of it soon, I mean you have to, your contribution to MG thread is absolutely necessary! You can ask it if you want, if I don't want to talk about it at that moment I can say it, can't I? You're right about the sarcoidosis. I've got a severe case of sarco, it has caused problems and damage in almost all my organs. My kidneys are perfect, but furthermore....My lungs are worst. They work for only 50% or something and that makes that I am very short of breath and that my saturations (level of oxygen in your blood) can dip easily. I've got small pulmonary bleedings quite often. Besides of that the sarco is been found in my stomach, nerves, muscles, bones, lymphatic system, eyes, liver....Almost everywhere. I'm using high doses of prednisolone for four years now but it's not enough. My spleen is been removed, it became too big and the risk of a rupture was too high. If that had happened I would have bleed to death. Since February I'm on a new drug, a so called Anti-TNF-Alpha-blocker. It looks like it helps in the battle against the sarcoidosis, I've got less pain and more energy now. But....I've got a primary immunodeficiency too (cvid). It's very complicated, those two together. I have to take immunoglobulins to make my immunosystem work, and on the other hand I'm taking drugs to lay it down.... It seems like the Humira is causing a deterioration of the cvid, that means that I can expect new severe infections more often. The symptoms I have to deal with: Pain in my muscles and bones, sickness, anorexia (can't eat, not hungry at all and only the smell of food can make me sick), shortness of breath, low saturation (goes along with terrible headaches), a great lack of energy, calciumlevels in my blood that are way too high (causes kidneystones) and severe infections every now and then. To find out more about those diseases you can have a search at wikipedia, it is a bit difficult to explain here. The only thing I can say is that it's very rare to have those two together and I'm wondering why I am that lucky person....You can live with it, but it's very difficult to keep under control, everytime I'm thinking that it's going better I'll get a new infection...It sucks!! If you have a question, just ask, I won't bite:wink2: Link to comment Share on other sites More sharing options...
Blue Sky Posted June 2, 2008 Share Posted June 2, 2008 Anouk I didn't know you were so sick, and I want to add my heartfelt wishes to everyone else's here. Your body is working really hard to deal with all of these things I am sure. I am so glad you have MFC to brighten your day. Who would have thought that a young guy in England who writes catchy songs has led to so many friendships for you (and us) around the world and given you (and us) such pleasure, especially for you when you have such a struggle with your daily health. Hope you get to six months! Link to comment Share on other sites More sharing options...
Anouk Posted June 2, 2008 Author Share Posted June 2, 2008 Anouk I didn't know you were so sick, and I want to add my heartfelt wishes to everyone else's here. Your body is working really hard to deal with all of these things I am sure. I am so glad you have MFC to brighten your day. Who would have thought that a young guy in England who writes catchy songs has led to so many friendships for you (and us) around the world and given you (and us) such pleasure, especially for you when you have such a struggle with your daily health. Hope you get to six months! I will, and I'll celebrate that with you all:mf_rosetinted: Thank you for your sweet words:blush-anim-cl: Link to comment Share on other sites More sharing options...
Anouk Posted June 3, 2008 Author Share Posted June 3, 2008 :tears: I've just got some bad news..... Yesterday they told me they couldn't find a bacteria in my blood, and that and the fact that the fever was gone (for already ONE day, great....that's a really safe duration...) were enough to say I'm 'healthy' and I could go home. I had my doubts about that, mostly because I feel that there's still something wrong in my lungs, especially the left lung. The physician said it was nothing, without even listening or anything, but his assistant called the microbiologist, just to be sure it was okay. The microbiologist has another point of view. They didn't examine the crap I'm coughing up and she knows for sure that there is a bacteria in that. It is worthless to examine it now, after 11 days of heavy antibiotics. But, after reading my story, with all those complications, she gives the advice to do intravenous treatments for AT LEAST two weeks..... That means I'm here untill at least Monday. I'm glad that she called the microbiologist, otherwise I would have been in hospital again within a week. But it sucks to know that I'll have to wait longer to be back home again...... Now I hope that it will turn out great, that the bacteria will be knocked down again after those extra days. And I'm glad to know that I know what's wrong with me, that I'm not crazy, but they are the fools again:punk: Link to comment Share on other sites More sharing options...
JoseOle Posted June 3, 2008 Share Posted June 3, 2008 Aww ohno Anouk! First, of course you are not crazy!! Well.. maybe a little.. but not when it comes to the knowledge of your body! I'm glad they know what's wrong, and I hope those extra days will kill that bloody bacteria! Sterkte meis! Moet nu echt gaan boodschapselen voor vanavond *zucht* Link to comment Share on other sites More sharing options...
Anouk Posted June 3, 2008 Author Share Posted June 3, 2008 Aww ohno Anouk! First, of course you are not crazy!! Well.. maybe a little.. but not when it comes to the knowledge of your body! I'm glad they know what's wrong, and I hope those extra days will kill that bloody bacteria! Sterkte meis! Moet nu echt gaan boodschapselen voor vanavond *zucht* In fact they don't know what's wrong, they haven't done a sputumkweek. They THINK it is that focking Pseudomonas again. Hate it, once you have it you can't get rid off it again. But that's okay, if that monster is quiet.... Have a great night dear, be careful and know I'm dying for your stories:naughty: See you soon Link to comment Share on other sites More sharing options...
violet_sky Posted June 3, 2008 Share Posted June 3, 2008 At least you're not going home with the awkward feeling or the conviction that something has been overlooked, waiting for yourself to feel worse again Silly doctors, don't they know that if it's brown you need antibiotics So ;o) Chin up! The acute problem is taken care of, now get rid of the nasty bacteria! Link to comment Share on other sites More sharing options...
Anouk Posted June 3, 2008 Author Share Posted June 3, 2008 At least you're not going home with the awkward feeling or the conviction that something has been overlooked, waiting for yourself to feel worse again Silly doctors, don't they know that if it's brown you need antibiotics So ;o) Chin up! The acute problem is taken care of, now get rid of the nasty bacteria! I'll do that! Lets kill it!! Die, you bloody Pseudomonas/ Achromobacter or whoever you are!!:laser: Leave me alone!!! Link to comment Share on other sites More sharing options...
sienna Posted June 3, 2008 Share Posted June 3, 2008 Oh Anouk, this was not happy news! But maybe better they found it out now and not after a couple weeks. You're with me in my thoughts and I really wish you would get rid of that stupid bacteria soon! For you: Link to comment Share on other sites More sharing options...
Satya82 Posted June 3, 2008 Share Posted June 3, 2008 My spleen is been removed, it became too big and the risk of a rupture was too high. If that had happened I would have bleed to death. Oh, Anouk, I didn't know all of this was going on! I know how much health issues suck. I have a hereditary blood disorder, and because of that I've had my spleen removed too, and my gall bladder. Fun, fun times I can tell you. I hope the doctors can figure out how to stabilize everything that's going on with you, and clear up the infections so you can go home soon! Link to comment Share on other sites More sharing options...
Anouk Posted June 3, 2008 Author Share Posted June 3, 2008 Oh Anouk, this was not happy news!But maybe better they found it out now and not after a couple weeks. You're with me in my thoughts and I really wish you would get rid of that stupid bacteria soon! For you: Thank you again. I am glad they listened to me, otherwise I would have been in the hospital of Leiden or Maastricht within a week....Even the microbiologist says it, so it's official: I'm not crazy:bleh: Oh, Anouk, I didn't know all of this was going on! I know how much health issues suck. I have a hereditary blood disorder, and because of that I've had my spleen removed too, and my gall bladder. Fun, fun times I can tell you. I hope the doctors can figure out how to stabilize everything that's going on with you, and clear up the infections so you can go home soon! A great, another spleenless one!! And, do you miss it? I'm not, it caused so much pain.... But now I've got infections that gets more worse everytime, so we had to conclude it did work.... And in that way I miss him Link to comment Share on other sites More sharing options...
Satya82 Posted June 3, 2008 Share Posted June 3, 2008 A great, another spleenless one!! And, do you miss it? I'm not, it caused so much pain.... But now I've got infections that gets more worse everytime, so we had to conclude it did work.... And in that way I miss him LOL, I kind of miss it, but it was causing a lot of problems. It was enlarged and then I got mono when I was in London, so it got even more enlarged (gross) and the doctors were afraid it would rupture so I was put on steroids...then a couple years later I got food poisoning in Mexico and my hemoglobin dropped and I almost needed a blood transfusion. So that's when I decided to get my spleen removed. And that caused other problems, because the surgeon accidentally cut my pancreas during surgery. That took about 2 years to heal and then I had my gall bladder out! I do wish I were "complete," though. With all my organs and everything. I feel sort of ultra-fragile without my spleen. And having your gall bladder out changes the way you eat. At least it did for me. Link to comment Share on other sites More sharing options...
Anouk Posted June 3, 2008 Author Share Posted June 3, 2008 aargh doctors and drugs:thumbdown:it sucks when the "cure" damage the body almost like the disease:boxed: I had already convinced my father to devolve the "cinque per mille" of our income to scintific researches, after reading about sarcoidosis we know what to choose:thumb_yello: I found also that an italian team is studiyng an alternative mix for avoiding toxicity problems derived by massive use of cortisone http://www.hsgerardo.org/ita/unita_operative/dettaglio.aspx?s1=13&s2=29&i=244&sp=166 I share your opinion, those cortisones do cause a lot of damage. But I have no choice, if I won't have taken them I'd already been dead. It doesn't work very good, but at least it works. I have to take 35mg prednisolone a day, but now it's higher because the sarcoidosis deteriorated with the infection. Normally I take 25mg. When I take less then 25mg, the fevers come back, my lungs hurt and work even less then 50%, I can't eat anything and I'm in a lot of pain. Fortunately I haven't got very much side-effects of it, even after 4 years of taking it. I'm using Humira (adalimumab) to keep the sarco under control, but that makes the cvid worse....Difficult choice.... LOL, I kind of miss it, but it was causing a lot of problems. It was enlarged and then I got mono when I was in London, so it got even more enlarged (gross) and the doctors were afraid it would rupture so I was put on steroids...then a couple years later I got food poisoning in Mexico and my hemoglobin dropped and I almost needed a blood transfusion. So that's when I decided to get my spleen removed. And that caused other problems, because the surgeon accidentally cut my pancreas during surgery. That took about 2 years to heal and then I had my gall bladder out! I do wish I were "complete," though. With all my organs and everything. I feel sort of ultra-fragile without my spleen. And having your gall bladder out changes the way you eat. At least it did for me. My story isn't the same, but in some ways it is. Mine had become too big because of all the granulomas that were left in it by the sarcoidosis. It caused so much pain that I've been living on morphine for over two years, but the immunologist were too afraid to do a splenectomie. But it became so big that the risk of a rupture was so high that they HAD to remove it. After they removed it, it turned out that I had the biggest spleen in the Netherlands:thumb_yello: The operation went along with complications, but it was at the end of 2006 and now it's okay for as far as it can be. My hemoglobin is still too low, nowadays it's 5,4. When it gets lower I'll get another transfusion... For the 4th time... They're afraid I've got some internal bleedings but I don't want all those nasty examinations again if it's not strictly possible. So I'm trying to get my hb higher by taking ferro. Hope it'll help.... Link to comment Share on other sites More sharing options...
Satya82 Posted June 4, 2008 Share Posted June 4, 2008 My story isn't the same, but in some ways it is. Mine had become too big because of all the granulomas that were left in it by the sarcoidosis. It caused so much pain that I've been living on morphine for over two years, but the immunologist were too afraid to do a splenectomie. But it became so big that the risk of a rupture was so high that they HAD to remove it. After they removed it, it turned out that I had the biggest spleen in the Netherlands:thumb_yello: The operation went along with complications, but it was at the end of 2006 and now it's okay for as far as it can be. My hemoglobin is still too low, nowadays it's 5,4. When it gets lower I'll get another transfusion... For the 4th time... They're afraid I've got some internal bleedings but I don't want all those nasty examinations again if it's not strictly possible. So I'm trying to get my hb higher by taking ferro. Hope it'll help.... Oh my goodness, your hemoglobin is 5.4?? Mine was down to 7 at the lowest, and my hematologist was freaking out. I can't imagine 5.4. You must be so tired. But yeah, my spleen was huge, too. I have pictures of them removing it during surgery. So gross. Hang in there. I'm thinking of you, and hope to hear some positive news soon! Link to comment Share on other sites More sharing options...
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