Anouk

Hee zussie!

Lang lang geleden zeg, jammer dat je niet online bent. Nu moet ik niets zeggen want ik ben er nooit, ik geloof dat ik ergens in mei nog eens ingelogd heb maar verder niet meer. Slecht he, maarja, vriendje vindt t vast niet zo gezellig als ik de hele avond achter de laptop zit (hoewel vandaag al de hele dag voetbal aanstaat dan mag ik ook wel even he???)

Alles goed met je? Ik doe mn best wat vaker online te zijn, dan zie ik je vast wel weer eens!

Liefs van Anouk!

My message was too long, so now it are two messages. You have to read the one starting with Hi first, otherwise you can't follow it I guess:wink2:

Hope you're doing fine. I'm off now, dreaming some sweet dreams I hope! See you soon!!

When I heard that I had to wait such a long time on the first appointment I was a bit irritated. It's a very demanding time, it's all so insecure and now we have to wait so long again....My head is filled with thoughts I really don't want to have, am crying a lot too these days.... But I'll try to make the best out of it and I'll keep on fighting.... Tomorrow I'll have to try a new medicine for the CVID, I'll keep you posted. Now I'm off, I'm tired!!

Hi! Great idea, helping each other through the Fridaynight in the Mikagasmics . When we can't be in Amsterdam we have to find a way to forget it, and that's a great way I think

I don't have any news about a transplant. Before going through the screening (they do it to check if your body's strong enough, if there are no other important complications or problems that can be a NO against transplantation) they want to check my liver first. It has already caused some problems in the past, and maybe they'll soon find out that it's not possible to go through a transplantation. In that case I won't go through the heavy screening procedure cause they then already know that my liver is too bad. So it's all depending on the condition of my liver. I have to wait for over 1,5 month to see that consultant, so that's 'not so nice'.

Hi dear,

How's life? I have to tell you a very bad thing: We won't meet each other this Friday, I am staying where I am; in hospital:sneaky2:

How bad is that? There is a very small chance that I'm home, but even in that case I won't be able to come to the gig. I hate it, I really do!!! I was sooooo looking forward to it, and now everything sucks because of that stupid lungs. Hate them, they ruin everything!!!

Hope you'll have a great evening, enjoy the gig double, for me

Hi dear, I'm back. Bored to the bone, nothing to do and no one home in the dutch thread. They've got better things to do (like going to gigs:sneaky2:). I won't make it this Friday, how bad is that? I was so looking forward to it, but now I won't make it. It's the 3d time that I'll miss him, against seeing a gig twice. Bad score I think:sneaky2:

Got an awful day, am worrying too much about everything and it makes me down and upset. It's all deteriorating so fast now and nothing seems to help to stop that stupid process.... Blehhhh, I hate the world today... Sorry for being so down, but can't help it. Hope you've had a better day:wink2:

What kind of pain do you have in your legs? Mine are killing me too, it's like they're stirring in my bones, a very nasty bonepain. I have a chronic pain syndrome in my legs, they don't know why but I think it's because of the corticosteroids. Beside of that my legs and arms feel like I'm getting the flu, that nagging pain in your muscles. It sux!!

Do you know how long you have to take the Prednisolone? Because you said it doesn't do it for you too...

I have to be on ab's for at least 7 days, that means till Thursday-evening. So it's really tricky....

Prednisolone doesn't work for me, my body is non-reactive on that. So I use Dexamethasone but it's almost the same, it's a stronger version of Prednisolone. I hadn't got any side effects of the Prednisolone, even continued to loose weight while taking it. But the Dexamethasone made me gain almost 25 kg (I was underweight so that was at least something lucky, but I hate my body now, when I look in the mirror I see a huge belly, with ugly scars from operations. I used to be 65kg (am 1,90m tall), when starting the dexa I was 52kg (far too light) and now I am about 80-85kg, depending on the oedema's in my legs)

I'll send a second message because it's getting too long

I don't want to miss another Mikagig, it would be the 3th.If I am a bit better than I am now I'll ask my doc if I can go for a day. I am so looking forward to it.....

It wasn't my idea to stay here, but yesterday I had an appointment with my doc to talk about the lungtransplant. When he saw me he knew enough. My lungs sounded worse and I am not feeling well for more than two months now. Taking so much antibiotics, when one is done I almost immediately have to start a new one because I get worse again. Don't know if my English is okay, I am so not concentrated because I haven't got enough oxygen in my blood, even with extra oxygen it's far too low. I forget everything and tinking is a crime. I am not the 'normal' Anouk...

Sounds stupid, but this whole situation is scaring me more and more. It's deteriorating so fast now and I don't know what to do about it. And neither do my docs. Blehhhh....

Are you feeling a bit better now? Have been thinking of you, even if I wasn't here.

Hi Silver!

It's a miracle, I'm online!! I already searched for you yesterday but you weren't here.

How's life?

Don't guess where I am at the moment:sneaky2: I'm soooo fed up with this place:sneaky2:

12 juli??? Wat is er dan.

Ik zal trouwens tegen de artsen zeggen dat ik moet mogen gaan van jou, denk dat t dan wel geregeld is:mf_rosetinted:

Hope it works for you!! I cannot use it anymore, my body's tolerant for prednisolone. I'm leaving now, my oxygen-concentrator just decided to quit its task so I have to make sure the 'emergency-unit' is working properly before hopping into bed. Stupid stuff.

Hope to see you back here very soon!!

What kind of auto-immune disease? I have one too, a kind of sarcoidosis but it is a sort of complication of that immunodeficiency. The autoimmune reaction causes the damages in my organs, destroyed my lungs and were the reason they had to take my spleen out.

Which steroids do you have to take? I've used a few, was on prednisolone for over 4 years but that doesn't work anymore. Now I have to take Dexamethasone which works better. But the side-effects are quite serious (however they can't exactly say if one reaction is a side-effect or if it's caused by the disease itself)

Hope you won't have side effects and that the steroids will do their work very well! I wish you all the best!!

Lots of love, Anouk!!

Hi Silver!

How are things with you? I've been thinking of you in the time of my absence here. Hope you're doing fine!

Love,

Anouk

Hi dear, look who's back. Again:naughty:

It's been a long time since I've been here and too much happened. In November we finally got our own home, and since that moment I am very happy here living with BF. But my health, don't ask.

That's the reason I''ve been away so long, I simply don't have the energy to come online everyday, or for hours and I have to use my energy for the most important things, even if that means I can't do what I want (like coming here:naughty:). But I've always been thinking of this site and my friends here and I simply don't want to give up everything because of that stupid body that does't do what I want:sneaky2: So you will see again me here from now on, not everyday but I'll try to save energy so I can have some fun here. I still love this place (and Mika, off course:biggrin2:)

How are you doing? Hope you're ok!

Lots of love,

Anouk:huglove:

Hi!

I wrote a message but it was too long, so now it became a PM

Hope you're okay today!

Hi dear!

It's been such a long time since I've been here. How are you doing? Things aren't well here. My physician doesn't know how to treat me any longer, it's more like trying now. They don't even know exactly what's wrong with me, they used to call it sarcoidosis but it's something else, but what? There are only 50-75 people in the Netherlands who have the same immunodeficiency with similar symptoms, so it's very difficult to develop a proper treatment. I'm in a lot of pain because of inflammations in my ligatures and muscles. My lungs are bad as always and because of the weather it's very hard to keep up a normal oxygenlevel. That's often too low which makes me even more tired. Boring isn't it?

I've been thinking of you, even when I'm not online. I really hope you're doing fine!

Lots of love from the Netherlands!!

Hi Silver!!

Thanks for your message, I appreciate that!

I've been away too long but things weren't going smoothly. Too less energy, too much pain. Sleeping at least 16 hours a day. It sucks!! But I'll try to come here more often (I'm saying that time after time) cause I miss this place.

How are things with you?

Hi dear,

Thanks for your reply, I know that this is the place to go to when I'm feeling as horrible as I do now. You always try (and succeed ) to cheer me up. Today was hell, and I don't have courage as you say, I just have to deal with it, there's no other way to go on otherwise. You should have seen me today, crying my eyes out. No courage left. If I could, I would have given it all back to the one who did it to me but that's not possible and how hard and unfair it seems by times, I think there's a reason for it. I don't understand that reason, but there must be. And being ill has given me some good things too, the relationship with my mum and dad, with Gerard (bf) and with my 'real' friends is so much better than it was, these are the people that are really important to me, I would do anything for them and I won't spent too much energy on other people who don't call back for example. I think I am happier than most people of my age, even with all the problems I have. I am happy with little things, like a beautiful flower. Most persons don't even see it. I know what is important for me. Sounds stupid, but in that way I am 'grateful' for this situation. Nevertheless I would do anything to get better but that's no option, I won't get better and that's a fact so face it. No one can say how my future will be so I am trying to make the most out of every day. But today was just a lost day, a kind of nightmare....Tomorrow Lineke (the friend who's diagnosed today) will come to visit me and we are a great couple, we're always making fun out of things, even when everything's grey. We also cry together but most of the time we've fun. A strange kind of humor, very ironic but that's also a way we found to deal with my situation, which now become her situation too......

Thank you for reading all this, I'm glad to write it down, it makes the chaos in my head a bit less chaotic

Hi dear,

Saw your reqeust today and of course I accepted it, thank you for inviting me

Things are bad here again. I've been at home for only 10 days, last Tuesday I've been taken into hospital AGAIN. I came home feeling bad and it only got worse. This Sunday my head exploded because of pain and Monday-evening I suddenly got a very high fever. Tuesday my mum called my doc and she wanted me to come, then they woud make some X-rays and check my blood and after that she would see what to do. When I saw that X-ray of the lungs I knew it, pneumonia again. In both lungs and a very severe one this time. So here we are again....I'm on i.v. antibiotics right now but they don't help much yet. Feeling very bad and in a lot of pain. And today was a real hell, my dearest friend has been diagnosed with breastcancer today....I'm feeling so useless right now, I want to be with her, like a friend should when a friend needs you, but I can't do that. And that sucks. But tomorrow she's coming to see me. I can't believe it, it's like a very bad dream and I want to wake up right now, I'm fed up with all this problems..

I really hope things are better with you....

Lots of love,

Anouk

Hee jij is er!

Dan ben ik wel weer terug ja, of misschien lig ik er dan alweer in omdat ze tot inzicht zijn gekomen dat een punctie toch niet voldoende was en ik alsnog een operatie mag ondergaan. Weet niet of ik daar echt zin in heb, de kans bestaat best dat ik dan weiger gezien het hele verhaal wat hieraan vooraf gegaan is (komt er in t kort op neer dat behandelend arts en ik overeenkwamen dat n punctie zinloos is omdat ie de opbouw van die klieren wil zien en dat gaat niet via een punctaat, maar er is vorige week met de grote visite besloten alsnog een punctie te doen, zonder mij daarvan op de hoogte te brengen. Als patiënt hoor je dat soort dingen pas achteraf....)

Maar die afspraak staat dan, alleen nog een datumpje prikken dan binnenkort!

Liefs!

Zusje!!

Wat stom dat je moet werken zeg vanavond! Ben ik er, dan ben jij er weer niet.... Kan het ook niet al té laat maken aangezien ik weer een buurvrouw heb, gelukkig wel een leuke dit keer. Niet zo'n zeikerd als vorige keren. Gelukkig loopt het nu weer goed mis wat betreft de communicatie met de arts, dat mens vindt het geloof ik niet nodig mij bij beslissingen te betrekken. Het is toch maar mijn lijf he, waar praten we over? Ach, misschien doet een officiële klacht haar tot inkeer komen.....

Tot snel zus,

liefs van Noekie!!

Hee Karin!

Long time no see!! Jammer dat je er niet bent, had graag je ervaringen van 2 juni gehoord. Misschien kunnen we binnenkort eens daten, en dan écht. Want we wonen zo dicht bij elkaar eigenlijk, én we delen een leuke hobby

Als ik me wat beter voel lijkt me dat wel gezellig, voorlopig vermaak ik me weer opperbest in Hotel EMC maar dat ga ik zo snel mogelijk voor gezien houden....

Liefs van Noekie!

Hi dear,

Yes of course I do miss our great conversations in the Mikagasmics, that was fun!! When I'm reading it again I'm still smiling, we're such a storytellers!!

I'm here cause they found lymph glands everywhere round my lungs and in my belly. They can be granulomas caused by the disease that's diagnosed, but it could also be cancer. So they have to do a new surgery to pick some glands out and examine them. I don't believe it's cancer, I've been through this before so I don't worry to much. That'll come later. I'm more afraid for the surgery itself then for the results. I've had many surgeries and there's always at least one thing going wrong. Never without complications, so it would be very nice if this will be the first surgery without any strange thing.....Whatever, I'll see it next week...

I'm off now, trying to get some sleep!

See you soon!!

Hi Alice!!

Yes I'm here!! Back in hospital so now I've got plenty of time to make a visit here. And of course I want to read everything about the Amsterdam-gig yesterday!

How are you? Hope you're doing fine!