just to say I love you

[Alysia]

Hi everybody.
I dont know if we can "talk" about all this story hapenning here.
if not, andrew, please delete this thread.
the other thread was deleted and we continue as if nothing happened.
I am writing because it was important to me to tell you all how wonderfull you are, supportive and generous and understanding.
I am proud to be part of this group :thumbup:
I just wanted to say I love you, dear friends.

[annekat]

I feel the same way about you, Alysia, and everyone else on here! We will get past what you are speaking of and heal from it, with the bonds between us even stronger than before.

[Hammy8241]

It shows that when the 'crunch' comes, we have a lot of very supportive people here. However, I would also like to say to Rebekah that there is no shame in being hacked and unless any contributions were made, no harm other than pride, has been done. Rebekah, you are and will always be a friend to this site so please don't be shy and stay away.

[pberggren1]

This is a family and a family loves ALL souls.

[andrew]

Thanks Alysia for starting the thread :)

Rebekah will be back soon. I for one look forward to seeing her back and continuing being a valued member of the family :)

[pberggren1]

Rebekah is totally AWESOME. She has to come back.

[mishb]

I agree Hammy - I don't know where I would be now, without all of you.


I also hope that Rebekah continues on with this forum - everyone, including her, have so much to offer.

I was actually sorry that the thread was pulled, because it had some valuable information in regards to what to expect if someone is in a coma.
Not knowing of anyone personally who has ever been in that situation, I found it quite helpful and would have liked pieces of it to be put in a "sticky" thread.

[drz]

There was some good info in that thread about comas and treatment during comas. And lots of support for Rebekah and Emily. I hope she got the message of feeling well supported during the crisis she didn't have.

[Debbie C]

I love how we are just one big "sick" loving family:love:

[BookNut]

I am glad that you started this thread. I agree with everone who has posted at this time. There was so mich good that was shown during that thread. good information of course...but mostly love and support. I too hope that Rebekah will return to the forum really soon!!

[rebekah]

I’m back! :)

I just needed to take a mini breather after everything that happened. Nothing after the original post should've ever been posted. I’ve been away from this site far too long and am glad to finally be back. After reading this, I just want to say that you are all awesome, and I love everyone here! I don't know where I would be without you or this amazing forum.

[annekat]

Whoopee! So glad to have you back, Rebekah!

[Barbara N]

We are really glad to have you back, we will all have lots of time to catch up. You need to eat and get strong and think positively. Lots of hugs y mucho ánimo, Barbara

[Alysia]

Hi Rebekah,
Im glad you are here. I missed you. I was so worried about you. :hug2:
I hope that you read what we all wrote to you.
thanks everybody for your "likes". thanks for being here. thanks for being the way you are. :thumbup:
I posted that thread and then went to sleep. (it was evening) and then I had a dream. I think the dream was about the forum.
In my dream Im coming to the hospital, holding RTX with me to get IV. there is a new department there, and on the door it is writen (in hebrew) "wegener" and Im so happy that finally I have a place to treat what I have. it looks so nice there, new and welcoming.
this is my feelling here. it is weggies home here. warm and welcoming.
and I even feel as if we speak the same language... :)

[rebekah]

I missed everyone so much too! I wish I could turn the clock back and go back to last week and have kept everyone updated... this is 2013, we should have flying cars and time machines by now right? haha I did read all the nice notes in the thread and in the guestbook. Seeing how everyone worried about me when it wasn't necessary was hard, but it made me realize just how amazing and caring the people in this forum are. There was some good info about comas, but nothing after my original post should have ever been posted. I was just so mad and angry at what happened at the time I wanted it deleted as it should've never gotten to that point.

[annekat]

We still have the time and ability to revisit anything positive that was in that thread, such as info about comas, blood tests, what it might be like to donate or receive a kidney, etc. Deleting the thread was the right thing to do. It is now in the past and we don't have to see it again!

[marta]

Wow, it looks like I have missed some significant stuff. Sounds like it's probably a good thing, but I also want to add that I would be a completely different patient and probably in a much worse place had I not found this forum. You guys are like a second family and I've not been on here much lately, so there is a bunch of people who have joined recently that I don't know, and I'm so bummed that the situation is such that more and more people have to join. It means our governments, science and research are not doing enough to get society out of this hole.

I stumbled on a photo on my Facebook account yesterday that Christi (Lightwarrior) had commented on and I hadn't seen it until just yesterday. I saw it and started to cry, then Hana (my daughter for those who don't know me) saw me and she started to cry, so we had a little cry for a lost warrior who made a difference in so many of our lives and was a friend (amongst so many others) that I had never met in person.

It's a funny situation but life has a funny way of introducing us to cool people and teaching us cool lessons (sometimes the very hard way)

I too love everyone on here and think of you often and send you big hugs and healing energy.

Peace.

marta

[Jaha]

I am so glad to hear from you, Rebekah and that you are doing ok. I echo everything everybody says about the people on this forum. I really don't know what any of us would be doing without it. We all have our own personal support at home, but they still don't understand like you all do, about all the thoughts and feelings we constantly have about wegs and what might come up for us in the future. Thanks to each one of you for your kind words, compassion and wisdom,love you all!

[annekat]

I agree wholeheartedly about the value of this forum. I ask myself over and over, what would I do without it? It is the one good thing about having Wegener's! And a REALLY good thing, at that!

Marta, it's probably good you missed that thread. You would have gotten involved and wasted your time with a fake situation set up by a probably mentally ill person. And yes, doesn't it seem like more and more people are being diagnosed and joining the forum? I'm hoping it's not that the numbers are increasing, though they may be, but that there is more awareness of WG and that therefore doctors are more likely to diagnose it instead of passing it off as other things. I'm sure it's not all one thing or the other, and you are right to keep up your good work of raising awareness so that our governments, researchers, etc., will take notice and do something.

[blove78]

I am new to the world of wegeners granulomatosis, my girlfriend of a year has had this since she was 24, along with a failed kidney transplant and many trials of different meds. i have been very supportive in her trials and tribulations, my heart goes out to her and anyone else who suffers from this disorder. i love her more than life itself and always will. i am constantly on the look out for as much information on any part of the subject as possible. i want to help as much asi am able too, and then some. if anyone knows where i can find more information on wegners and the drug cytoxan i am all ears. thanks, Brandon.

[mishb]

Welcome to the group Brandon,

We have many parents, partners and other loved ones on this forum to try and gain knowledge of this crazy disease.

Anything you are looking for, you can find in the search engine.

In the little box, type cytoxan or CTX and you will find many different threads talking about it.
The same goes for any one of the medications that your gf may be taking, or even type kidney and see whats going on there.

I hope we can help you and your gf - all you need to do is ask.

Glad you found us.

[annekat]

Welcome, Brandon. Michelle pretty much said it all. In your time on here, you'll find there's a lot of variation in the disease, symptoms vary in location throughout the body and in severity from one person to another. I was on cytoxan and it did a good job of decreasing my worst symptoms in a couple of months time to where I could go out in the world and function again. But it does take time for most people to go into remission, if they are going to. We'd be glad to hear more about your girlfriend's WG experience and we'd love to hear from her, too. If she isn't up to it, we understand. Keep us posted on how she is doing and feel free to ask us specific questions about the disease or the treatments. Many on here are quite knowledgeable.

[rebekah]

Hi Brandon,

Anne and Michelle said some good information. I'm sorry you had to find us, but this is a family of very supportive and knowledgeable people and there's a ton of great information that can be found throughout this forum. I'm sorry to hear about all the trouble she is having... I just had a kidney transplant in December but can't imagine what she's going through. I hope they can find the right treatment for her, so she can feel better soon.

[Alysia]

Hi Brandon.
welcome to the best forum in the world.
maybe you should open a new thread because in this thread you can be missed.
eventhough it is nice that you introduce yourself under the title of love. this is love.
I dont know what is more difficult: to have WG or to take care of someone having WG.

[Rini]

Wow, it looks like I have missed some significant stuff. Sounds like it's probably a good thing, but I also want to add that I would be a completely different patient and probably in a much worse place had I not found this forum. You guys are like a second family and I've not been on here much lately, so there is a bunch of people who have joined recently that I don't know, and I'm so bummed that the situation is such that more and more people have to join. It means our governments, science and research are not doing enough to get society out of this hole.

I stumbled on a photo on my Facebook account yesterday that Christi (Lightwarrior) had commented on and I hadn't seen it until just yesterday. I saw it and started to cry, then Hana (my daughter for those who don't know me) saw me and she started to cry, so we had a little cry for a lost warrior who made a difference in so many of our lives and was a friend (amongst so many others) that I had never met in person.

It's a funny situation but life has a funny way of introducing us to cool people and teaching us cool lessons (sometimes the very hard way)

I too love everyone on here and think of you often and send you big hugs and healing energy.

Peace.

marta


I also have been gone to long and probably would have missed it ether way but i really value that everyone hear is so patient and willing to explain and teach when i panic or reach a breaking point in my life again. Lots of inspiration and I realize leaving was not the right way to heal

[Rini]

I am new to the world of wegeners granulomatosis, my girlfriend of a year has had this since she was 24, along with a failed kidney transplant and many trials of different meds. i have been very supportive in her trials and tribulations, my heart goes out to her and anyone else who suffers from this disorder. i love her more than life itself and always will. i am constantly on the look out for as much information on any part of the subject as possible. i want to help as much asi am able too, and then some. if anyone knows where i can find more information on wegners and the drug cytoxan i am all ears. thanks, Brandon.

ooo nooo u found the mother load! hehe nice to be introdue, i am Erin and 20 going on 21 and have had it official for 2 years this mount. my bf is also floating around hear somewhere and may like to hear from a healthy person looking in perspective. I would say EVERYONE hear has a lot of good advice and your best start is learning to navigate the sight some, it is a tad ticky at the get go, and reading a\ stories. posting threads with questions or a highlighted topic can help you too It is very sweet for you to join and be so active in understanding!

[annekat]

I also have been gone to long and probably would have missed it ether way but i really value that everyone hear is so patient and willing to explain and teach when i panic or reach a breaking point in my life again. Lots of inspiration and I realize leaving was not the right way to heal

Rini, you only JUST missed what prompted this thread, and it was only a week or less where an impostor hacked an account, took over a thread, and got some of us swept along in a very convincing but fake scenario. The entire thread was deleted, and you are lucky to have missed it. In the overall scheme of things, it was a blip in time and insignificant to the forum. We are glad you are back posting again!

[Barbara N]

Me too, Hurray for the chief and everyone on this fantastic forum. It is even teaching me a new skill, the computer. I never thought I would learn and didn't really care before. When I figure out the photo albums watch out guys. AWESOME was a great word to pick. You are Awesome Rebekah. For a forum full of sick people, I don't think I have ever met a more upbeat group of people. ANIMO for WEGGIES It sound as if I also have missed a lot while I was away.

[blove78]

thank you all for the information and kind words, i appreciate it very much and do plan to investigate this disease further to try to understand as much as i possibly can about it.

[BookNut]

ooo nooo u found the mother load! hehe nice to be introdue, i am Erin and 20 going on 21 and have had it official for 2 years this mount. my bf is also floating around hear somewhere and may like to hear from a healthy person looking in perspective. I would say EVERYONE hear has a lot of good advice and your best start is learning to navigate the sight some, it is a tad ticky at the get go, and reading a\ stories. posting threads with questions or a highlighted topic can help you too It is very sweet for you to join and be so active in understanding!

I am ALMOST ready to put "Honorary Weggie" into my signature. The labs from my bronchoscopy are taking FOREVER to come in. My expectation, based on my pulmy's comments after the procedure, is that there will be no Wegners. We believe my problem is probably bronchiectasis (say that 5 times fast)....probably brought on by a childhood bout with meningitis, along with yearly bouts of bronchitis. But, I have received so much help from this group - and have come to feel that I have a new circle of friends. So - I plan to hang out here no matter what!!