I really want to thank you!

[Anouk]

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!

 

Great, we could share our pics then:thumb_yello: Maybe we could open a splenectomie-picture thread??

I am very tired, but that is also a symptom of the sarcoidosis. So it doesn't make a difference when my hb is higher....

Don't have positive news, in fact I don't have any news at all. Only a deterioration of the pain, because I am not allowed to use the Humira right now...

[A. Clay]

DO think of you & hope things go as smoothly as possible for you . . .

[Anouk]

DO think of you & hope things go as smoothly as possible for you . . .

 

Thank you! Your siggie does help a lot:naughty:

[vanessa]

Aww I hope you'll feel better soon !

Here is a cure for you

 

[Satya82]

Great, we could share our pics then:thumb_yello: Maybe we could open a splenectomie-picture thread??

I am very tired, but that is also a symptom of the sarcoidosis. So it doesn't make a difference when my hb is higher....

Don't have positive news, in fact I don't have any news at all. Only a deterioration of the pain, because I am not allowed to use the Humira right now...

 

Can you imagine how grossed out everyone would be if we posted pictures of our spleens? Oh heck, I'm still grossed out by the whole thing! (I also have a picture of the drainage tube they had to stick into me when my pancreas was leaking. Now that is really gross.)

 

Well, I suppose no news is good news, right? Maybe? I'm thinking of you, hon! Take care of yourself as best as possible!

[Anouk]

Aww I hope you'll feel better soon !

Here is a cure for you

 

Vanessa thank you so much. You're cure is better then Tobra and Tazocin together:thumb_yello:

Can you imagine how grossed out everyone would be if we posted pictures of our spleens? Oh heck, I'm still grossed out by the whole thing! (I also have a picture of the drainage tube they had to stick into me when my pancreas was leaking. Now that is really gross.)

 

Well, I suppose no news is good news, right? Maybe? I'm thinking of you, hon! Take care of yourself as best as possible!

 

In fact I got some news this afternoon. My hb was higher, but dropped again. They want to do a new gastroscopy but I won't let them do that because I know exactly what they'll see. And I won't let them do another bronchoscopy too. They did that once in this hospital, with an infection as result...

 

Got an annoying side-effect of the Tobramycin too. A headache that drives me crazy, paracetamol doesn't work and they won't give me Ibuprofen.

[Vedrana]

Hi Anouk! Thank you for the answers, that sounds really horrible, and you are so young...and...actually I don't even know what to say, because none of my words can help, but I'm really, really wishing you all the best.

[Anouk]

Hi Anouk! Thank you for the answers, that sounds really horrible, and you are so young...and...actually I don't even know what to say, because none of my words can help, but I'm really, really wishing you all the best.

 

Awww thank you!! You know, people who are healthy use to think that they can't do anything for people who are ill. But let me tell you that it is so good to know that there are people that think of you when you're going through a hard time. All those words DO make a difference, they DO help. I am sooo glad I've joined the MFC, it really feels like home, how strange it may sound. I've found so many nice people here, and it makes those days that are filled with pain or other uncomfortable sh*t a lot easier. I'm having a great time here, so thank you all again

And I'm always looking at the bright side of life, that helps too, but you all make that easier for me:thumb_yello:

[Vedrana]

Well, to that I can totally relate, whatever was going on during the day, when I come here in the evening, it somehow makes me feel better, I'm so glad that I find this place too

Good night Anouk! (I just realize what time it is, it's so easy to lose track of time in here )

[celien]

Hi Anouk!

How are you today?

I wish you all the best!

[Anouk]

Hi Anouk!

How are you today?

I wish you all the best!

 

Honestly?? I feel like CRAP!

Had so much pain last night, haven't had an hour of sleep so I'm exhausted. Just mentioned I'm so glad to have my spleen removed, because it can't hurt anymore, but now I got the same kind of pain in the same area, left side of my belly. It can be that there is growing a new spleen (difficult story but to be short: when some 'spleencells' stay behind after the splenectomie those cells can grow out to a new spleen. And I know that there are some cells left....afraid they're causing this pain:boxed:) Haven't seen a doctor yet, but I'm going to ask if I can take morphine again when the pain is so bad.... And when they say no, I'll make sure my mum brings it with her.

 

I'm quite irritated too at this moment. I've taken a shower 1,5 hour ago and as soon as I finished it I asked to put the infuse back on, otherwise the needle will be destroyed again.... And guess; it hasn't been done yet. I've tried it myself (I'm a nurse too) but it is already filled with concentrated blood and when they wait any longer they can take out the needle cause then it can't be used again.....

 

And this is just one of those days I can't take it anymore.....They keep on saying the X-thorax looks better, that my blood is better and all that stuff, but I feel like a ceiling mop and am not happy at all. They can tell I have to go on, but I'm the one to feel the pain and discomfort of all this sh*t.... And I hate that. Not only the weather is grey here, my mood is grey too:thumbdown:

 

Sorry for this boring story again....

[Laurel]

Awwww Anouk... I don't even know what to say to you

 

Just know that we're all here for you... I just wish it would all go away, but if you need to talk we're always here...

[celien]

awww, wished I could help you, but, like laurel said, we're all here for you! So if you need to talk... I'm thinking of you while I'm studying!

 

xxx

[mari62]

A big gentle hug from me and you know, I'm here , too !

[Kelzy]

I have an immune disease too.. I know what you're going through to a certain degree. Hospitals, surgery, no cures - only treatments..

I have to go back and read this whole thread, mostly what you've posted..

But I just want you to know I'm in here with you.

[Anouk]

I have an immune disease too.. I know what you're going through to a certain degree. Hospitals, surgery, no cures - only treatments..

I have to go back and read this whole thread, mostly what you've posted..

But I just want you to know I'm in here with you.

 

Which immune disease have you got? I have CVID, my marrow cannot make IgG and IgA, and that has already caused serious problems in my lungs. They're severely damaged and can't get much better. Maybe, if Í work really hard on my condition (and I do that as hard as I can) I can win back a few % of lungcapacity. But it will never get higher then only 60% on very very good days....

And it doesn't make a great combination with my sarcoidosis too, when one of those too is active, the other will be active too....

 

To be short: It SUX!!!

[Kelzy]

Which immune disease have you got? I have CVID, my marrow cannot make IgG and IgA, and that has already caused serious problems in my lungs. They're severely damaged and can't get much better. Maybe, if Í work really hard on my condition (and I do that as hard as I can) I can win back a few % of lungcapacity. But it will never get higher then only 60% on very very good days....

And it doesn't make a great combination with my sarcoidosis too, when one of those too is active, the other will be active too....

 

To be short: It SUX!!!

 

Oh I bet it sux severely!!!!!

And you have every right to say "No I'm not coping today, this sux!"

Did they fix your IV yet? (infuse)

 

I have Crohns Disease. Which means my body attacks itself through the immune system depending if it's on high alert or low alert.. I struggle to maintain the balance sometimes. I've been on prednisone and immuno-suppressants. arrgghh they're horrible things.

Do you get moody from the steroids? I didn't notice how bad I got until I came off them..

 

Anyway, you're definitely in my prayers now.

Have you tried or heard of Probiotics? Could they help you?

And have they got you on a hospital Food Drink yet?

I was just thinking of when I had pneumonia a few years ago, thanks to immuno-suppressants..

This may sound really strange and slightly embarrassing for me, but after my left lung collapsed on me, while I was in hospital, the way I strengthened it was through humming along to music. The nurses would giggle at me when they came in but I just went on humming..

 

Luckily for me I was partially deaf from the antibiotic's at the time

But whenever I feel a bit short of breath, as it still happens from time to time, I hum to some music. Strangely therapeutic.

[Mici]

Hi Anouk, sorry to read about the health issues, i hope you feel better now.

[Wendi]

Hiya Anouk - that sounds like a total pain!! Made worse by the fact you

are a nurse, so you KNOW what needs done, and when!! I can't say anything except - thinking of you and sending you gentle hugs!!!

[Gatagordinha]

Hi Anouk, I didn't realise about your illness either, I haven't been around on here so much lately (and hardly at all on Mikagasmics ).

 

I wish you all the best..and this is a good place to come to either distract you and cheer yourself up, or moan and get things out, whichever you need.

 

MFC is still a very friendly and supportive place

[Anouk]

Oh I bet it sux severely!!!!!

And you have every right to say "No I'm not coping today, this sux!"

Did they fix your IV yet? (infuse)

 

I have Crohns Disease. Which means my body attacks itself through the immune system depending if it's on high alert or low alert.. I struggle to maintain the balance sometimes. I've been on prednisone and immuno-suppressants. arrgghh they're horrible things.

Do you get moody from the steroids? I didn't notice how bad I got until I came off them..

 

Anyway, you're definitely in my prayers now.

Have you tried or heard of Probiotics? Could they help you?

And have they got you on a hospital Food Drink yet?

I was just thinking of when I had pneumonia a few years ago, thanks to immuno-suppressants..

This may sound really strange and slightly embarrassing for me, but after my left lung collapsed on me, while I was in hospital, the way I strengthened it was through humming along to music. The nurses would giggle at me when they came in but I just went on humming..

 

Luckily for me I was partially deaf from the antibiotic's at the time

But whenever I feel a bit short of breath, as it still happens from time to time, I hum to some music. Strangely therapeutic.

 

Wow, we're kind of alike.....My lung-physician (which is the expert in Holland and one of the most famous doctors on the terrain of sarcoidosis worldwide) calls Crohn sarcoidosis of the intestines, those two diseases are very alike. You can also say that sarcoidosis is crohn outside the intestines.

I take immuno-suppressants too, Adalimumab or Humira....I've been in a trial for Remicade or Infliximab, but the side-effects were too heavy. Got neurological fall-outs, like that I couldn't move one side of my body, or that I missed the strength in my muscles. Which one do you use??

I've been on Methotrexate too. And I'm taking prednisolone in a high dosis for already 4 years now. I have to say that I have not that many side effects, but I get moody when I take less or more of it, even if it's only 5mg....And I can't sleep very well when I'm trying to get the dosis down....

 

You know it's complicated yourself. For me too, cause on one side I have an auto-immune disease (the sarcoidosis) so I have to supress my immune system. On the other side I've got an immunodeficiency, which means my immunesystem cannot operate on its own. I need to take immunoglobulines with a subcutan infuse 3 times a week. Finding a balanse seems impossible.....

 

Last week I started with energy enriched drinks again, cause I'm losing weight. My appetite is completely gone. I can live on tea when I want too, I won't get hungry at all. But my body needs more energy than a healthy body so that's quite a problem...I'm trying to eat normal, but I can't. And it's becoming kind of psychological too, only thinking of food can make me really sick....

 

I have to go now... Should at least try to get some sleep. It's almost half past one now and I'm still not sleepy....I'll put on my mp3, so I only hear what I want to (Mika!!!) and not those snoring old ladies around me......

 

Night night!

xxxx

[Kelzy]

How are you feeling today? Did you sleep? Did you hum yourself off to sleep??

 

I read all the above and I did think, when I was looking up sarcoidosis, that it sounded like crohns but outside of the bowel..

I haven't been on Humira or any big time drugs. Only Prednisone and Imuran (the proper name escapes me now)

I've actually been pretty lucky with the Crohns and haven't lost any of my bowel, even though all of it is affected. I did have some operations when an abscess formed. It took 3 operations to completely remove it. That wasn't pretty. But the crohns plays up occasionally and I lose alot of blood, get very thin, lose my appetite, vomiting, tired but can't sleep.. all those things. I occasionally end up in hospital but they never do anything that helps me. I lie and get myself released so that I can go home and treat myself.

Basically, I go on the food drink for 2 months and have as many vitamins and the probiotics as often as I can. As well as 25mg steroids. So far it's fixed it each time.

 

I've completely changed my diet and lifestyle because of it.

Oh the psychological aspect!! Food is the enemy!! lol!! I've been through that.

I end up choosing 1 food that I like and telling myself it's not the enemy. And I basically only eat that and have the food drink. Last time I was sick, my friendly food was dry breakfast cereal called Uncle Toby's OT's in Wildberry flavour. lol!! And I would just get a handful and eat them if I felt like food. Then I slowly re-introduced other foods.

It's something I learnt when I was diagnosed.

 

So what things have you learnt in the past that help you?

[Satya82]

And I'm always looking at the bright side of life, that helps too, but you all make that easier for me:thumb_yello:

 

You do seem incredibly upbeat considering everything you're going through. I had a hard time staying positive when I was going through all the issues that led up to my splenectomy. Keep it up, though! Staying positive will help your body work more efficiently.

 

It can be that there is growing a new spleen (difficult story but to be short: when some 'spleencells' stay behind after the splenectomie those cells can grow out to a new spleen.

 

Oh yeah...besides my enlarged spleen, they also removed THREE accessory spleens. Little baby ones. I was rather appalled that I had four to begin with, but apparently it's not uncommon.

 

I've been on prednisone

 

Have you tried or heard of Probiotics? Could they help you?

 

This may sound really strange and slightly embarrassing for me, but after my left lung collapsed on me, while I was in hospital, the way I strengthened it was through humming along to music. The nurses would giggle at me when they came in but I just went on humming..

 

So sorry to hear about your trials too, Kelzy! I've also been on prednisone...I think my hematologist put me on that when he was afraid my spleen was going to rupture. It helped a lot, but I only took it for a few weeks.

 

I take probiotics, too! I love them. Ever since I had my gall bladder out, I've had a lot of problems eating, and taking probiotics seems to help. (Especially since about 70% of your immune system is in your digestive tract.) I have to be careful what I eat now, and a lot of things make me feel sick. But...overall I can't complain too much.

 

I love that you hum, too. Music always helps me when I'm stressed out. I hum and sing a lot--mostly when no one else is around to hear!

 

Take care Anouk (and Kelzy)! Anouk, I hope you're able to get out of the hospital soon!

[Kelzy]

You do seem incredibly upbeat considering everything you're going through. I had a hard time staying positive when I was going through all the issues that led up to my splenectomy. Keep it up, though! Staying positive will help your body work more efficiently.

I believe in staying positive too. I get to a point where I snap and say "No No No No No. No more of this. I'm going to feel better tomorrow. And then the next day I'll feel even better again" And I really believe that is one of the most important things I do.

Oh yeah...besides my enlarged spleen, they also removed THREE accessory spleens. Little baby ones. I was rather appalled that I had four to begin with, but apparently it's not uncommon.

Arrgghhh That's incredible!! I never thought it possible! I must bow to your awesome spleen growing skills (sorry, even though it must've been horrible for you - I'm truly amazed)

So sorry to hear about your trials too, Kelzy! I've also been on prednisone...I think my hematologist put me on that when he was afraid my spleen was going to rupture. It helped a lot, but I only took it for a few weeks.

Thank you! I'm sorry to hear about yours too. But it certainly makes us stronger

A few weeks of prednisone is all they really ever recommend. It's a clever little pill. If I feel a flare up starting, I take 25mg and try to wean down and off over a week or so. It's also useless on me sometimes. I can't think of the medical term, but continual use has made it less-effective.

I take probiotics, too! I love them. Ever since I had my gall bladder out, I've had a lot of problems eating, and taking probiotics seems to help. (Especially since about 70% of your immune system is in your digestive tract.) I have to be careful what I eat now, and a lot of things make me feel sick. But...overall I can't complain too much.

I love them too! I haven't been taking them much recently, but I just had a flu so I better get back on them.

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

I love that you hum, too. Music always helps me when I'm stressed out. I hum and sing a lot--mostly when no one else is around to hear!

 

Take care Anouk (and Kelzy)! Anouk, I hope you're able to get out of the hospital soon!

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.

 

Anouk, I hope you're much better today!

[Anouk]

Hi girls!

 

I am quite happy now. My best friend came along to see me, just like yesterday. We can laugh anytime, it's always fun with her. And so it was this afternoon. We've got our own little stupid jokes for years but they're still working for us. Others may find us quite irritating, but heck them. I don't mind. Laughing is a fantastic drug too in my opinion.

 

I haven't had much sleep again, and again it was because of the pain. The physicians assistance listened to me today and put me back on morphine as a rescue drug when the pain breaks through. It's a relaxing thought to know that I can take something that works when the pain is getting too heavy.... Enjoyed an icecream again, while sitting in the sun. Haven't had fresh air for over a week so it's great to step out of this dull building at last. Only a few more days to go.... I'll make it. Sunday I am allowed to get out for a few hours. I am going to a meeting of the trollbead forum. And I'm going to buy myself some little (but expensive:naughty:) presents....

 

So what things have you learnt in the past that help you?

 

Food is a great issue here too. I take probiotics too, mostly because of the fact I am on antibiotics every single day. I need one to go with the prednisolone, the prednisolone makes me very 'attractive' (or sensitive) for a certain bacteria, so I have to use it always. It can cause vomitting and stuff like that, it kills the good bacteria too, so as a compensation I'm taking probiotics. Then I haven't got those problems.

I learned that a certain structure in my days can work too. But it is hard to go to bed when you don't feel tired. Doing things at the same time as much as possible brings structure in my days and it leads to less pain and more energy. I have to make sure I get enough rest, but that is the hardest part as well.

 

One of the most difficult things for me is saying NO and knowing when to stop. I won't get a sign when I cross a border if things are getting too much for me. That sign comes afterwards, in pain and sleep. So it is difficult to say I'll quit' when no one else does that. I want to forget the fact that my body can't do what a normal body of someone of my age normally can do. This is the reason using a wheelchair is a non-issue for me. I don't want to accept the fact I can't do things like the way I want them to do. But I've reached a certain border now: I know that something like a wheelchair can really make a difference for me. It can save energy and that should result in less pain. It will make it all just a little bit easier for me, so I've been thinking about it again (and believe me, I've said this so many times, but it's just too hard....But now I mean it for real) and I came to the point that I decided to get a wheelchair. Let them think....It's my body (which is the problem too:blink:) and I'm the one that has to deal with the pain and discomfort. So if there is anything that can lead to a more normal life, I'll take it.

 

Music is very important for me too. I cannot sleep without my mp3-player. I used to sleep even worse in the time I had so much pain of that spleen. In that time I've been searching for a way to relax myself and forget the world around me. As you can see in that qoute in my siggy, I'm a HUGE U2-fan. For over 14 years now.... They've helped me through the hardest, loniest times ever. When I was about to give up my fighting, Bono's voice was with me. In the darkest hours he was the one who told me to hold on. Songs like "Stuck in a moment" became totally different for me. I remember one day in the hospital in Maastricht, after that splenectomy. They couldn't hold the pain under control because of failing epidural (spinal) paintherapy and I felt so incredibly bad..... 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. It is my first music love, my best, and it will be my last too. But, when I heard Grace Kelly, another very important person came into my life.... Mika's been very helpfull too. He cheers me up when I'm down, he created a complete world to hide in when this real world becomes too dangerous, too difficult. And, he is the reason I am here. I cannot say how happy I am to be part of the MFC....But I know you'll feel the same...