Hi this is Acker from Luton Bedfordshire, England

[acker]

Hi all Acker here, I'm new on here. Had a bit of a bad run the last few years. A quick run down started 2004 Prostate cancer, 2006 Ex's suicide, 2011 Vasculitis 5wks hospital with Plasma exchange x 6. 2012 motorcycle accident. 2013 best friend died, brain hemirige. Live on my own so suffering from lonelyness and depression, but fighting it :biggrin1:

[Alysia]

welcome Acker,
I am sorry for you long history of too much painful things. no wonder you are depressed :sad:
please share with us whatever you feel like. here, you are not alone anymore, we are with you. :hug1:

[Dirty Don]

Welcome Acker...this is a great place to find answers, compassion, and needed info. No wonder you got WG...there are theories (only that at this time) that stress induces WG...plausible when one hears of stories such as yours. You sound like a fighter, that's good...you'll get thru. Please ask away on here...we are all best WG friends on here! LOL! Best to you...hang tough.

[freakyschizogirl]

Hi Acker and welcome. I live in Essex and not too far away from you. Please done feel lonely, there is always company here.

You will find more support and knowledge in this forum than anywhere else.

I'm so sorry to hear about all the tragedies you've have over the last few years but the fact that you are here now is testament to how strong you are.

Never give up the fight. I don't think there is hardly a person on the forum who hasn't had their struggles with depression so feel welcome to share if you feel like you need to. Where are being seen for your Vasculitis? Local Rheumy or GP or hospital?

[woz]

Hi Acker, you have certainly had your share of bad luck in the last few years, but you have joined a group of people, who have been through a lot of very difficult times and experiences. We have all had good times, and bad times, but here we are all in the same boat, coming to terms with what we have, and how we are going to beat it. This is a great place to ask questions, and find out information, that you cant get from doctors, personal experiences, and great comradery. Ask lots of questions, and read all the threads that are here, it helps if you know as much as the doctors, you can then relate your symptoms much easily, as wegs is different in every person. All the best.

Regards Woz....

[windchime]

Welcome Acker. I'm sorry for the very difficult 10 years you've had. As previously stated no wonder you have wegs. We'd love to hear more about your wegs journey if you want to share it. What drug protocols you're on, etc. There are wonderful, warm and loving people on this forum, so you've come to the right place. We share stories, answer questions and most importantly we listen. If you need to talk, rant or vent we're here for you.

So again welcome to the forum and here are some hugs for you. :hug2:

[Geoff]

Hi Acker,
Another Essex Weggie here! Watch out we are all around you!
In May i am hooking up with more of the Clan for a pub lunch near Bedford if you are interested? Last time there was nearly 10 of us sharing stories but always with a laugh, smile and a joke.
If you are interested PM me soon!!

[mishb]

Hi Acker and welcome to the forum.

You now have brand new friends from all over the World. Someone is on here 24/7 - yep that's probably Alysia - - - - - only joking. :flapper:
Seriously though, if you ever need to chat or vent or have a laugh you will find different people on here at different times of the day from all over the land.

I met up with an Aussie WG Group of people, and it really is a must, if its possible for you, to meet up with someone that has the same condition as you.
I think there were 10 or so people with WG in the meet up that I had and we chatted as if we had been best friends for ever.

If you can't manage a meet up - then we, on here, are the next best thing. :thumbsup:

[Alysia]

[QUOTE=mishb;82239]
Someone is on here 24/7 - yep that's probably Alysia - - - - - only joking. :flapper:
/QUOTE]

:lol: the "addicted" one :blushing: :wub:

[mishb]

[QUOTE=mishb;82239]
Someone is on here 24/7 - yep that's probably Alysia - - - - - only joking. :flapper:
/QUOTE]

:lol: the "addicted" one :blushing: :wub:

I think there are many of us on here that are addicted. :razz::hug3: We love you. You make it fun to be here :thumbsup::wub:

[ingemlb]

Someone is on here 24/7 - yep that's probably Alysia - - - - - only joking. :flapper::thumbsup:

Michelle i think that's the pot calling the Kettle black lol

Hi Acker. so sorry to hear of your long history of tragedies and stress. You must be strong to have survived all that so you will also survive this Wegener's. I am very new here too but already feel like part of a family. I find the members here to be more helpful than all the medical professionals I have managed to accumulate in the last few months. So you are in good company. :)

[acker]

Hi Alysia,Wow !!! what a responce, I didn't expect so many people to reply. I guess I was feeling a bit low yesterday as it was the day my best friends ashes were being spread on the sea in Devon, and I couldn't afford to go down to the ceremony. He was an ex Sub-mariner, and a keen Sub-aqua diver and it was one of his favourite dives. Sorry it takes so long for me to reply but I'm not very good on PC's and crap at spelling, so it will take ages for me to reply to everyone. You were the first so thank you very much. Acker :thumbsup: x x

[acker]

Hi Don, thanks for your reply mate, I've so many and I'm not very good on PC's, so it will take ages for me to answer them all. All the best to you as well. Acker :thumbsup:

[tankerB25]

Hi Acker, Man that's a lot of difficult stuff to manage...but I think this site is a big help it's like instant friends! I just signed up a little while ago and have enjoyed exchanging stories with folks who have had to handle difficult situations. keep the faith brother! Help, information and friends are right here!

Steve

[acker]

Hi, thanks for your lovely reply, I've had so many I couldn't believe it !!. Sorry I take a long time to reply, not very good on PC's. In answer to your question about my care, I have to go to clinic at hospital every 6 wks, and I am on a Vasculitis worldwide study, I have to carry a card in case of infection or relapse, it has No's on it so I can ring for a research nurse or renal ward 24/7. So it's great to know they are looking after me. I have always been a positive guy and a great joker type, but I don't have anyone close that I can just sit down with and let it all out, when I feel frustrated I just get on my motorbike and ride for hours, that helps as I have to concentrate so hard on what I'm doing, I can just block things out of my mind, especialy with the standard of peoples driving now. Once again thanks for your reply. Acker :thumbsup:

[acker]

Hi Woz, thanks for your reply mate, I've had so many I did'nt believe it. I'm not good on PC's so it's going to take me ages to reply to all. Best wishes to you. Acker :thumbsup:

[tankerB25]

Hey Acker, I know exactaly what you are talking about when you say riding is a great way to deal with problems. I used to have a harley and riding was the best theropy I can think of. Had to quit riding because of a work injury and have always missed it. If you can ride even with WG you are lucky keep at it but like you say watch out for the other guy!

Steve

[MikeG-2012]

Sorry it takes so long for me to reply but I'm not very good on PC's and crap at spelling, so it will take ages for me to reply to everyone.

Did you know that Google Chrome browser checks your spelling as you go, even in reply boxes on this forum? That's what saves my typing mistakes! (-8

We don't mind slow and steady Acker, that's what all of us do to get ourselves healthy again after a flare up or being diagnosed, slow and steady paths are the best kind!

Welcome from a fellow rider from across the pond!

[acker]

Hi Cindy, thanks for your lovely reply, my wegs journey started at my local hospital 3am, I was pumping blood out of every known orifice, then transported to a major renal unit at another hospital (luckily for me one of the best in England is not to far from me ) 3 days to stop the bleeding , with loads of transfusions. By this time it had spread from my legs (which were like ballons ) into my large intestine, lungs, throat and kidneys, by this time I'm twice my nornal size. they did biopsys on my intestines and kidneys. I was given about 3 drugs intravenously ( I don't know what they were as I was not fully conscious by then) the next part of my treatment was Plasma exchange ( 2 pipes sewn into my neck and 22 litres of Plasma pumped through my body ) this was repeated 6 times, after which, over the next 3 weeks with more drugs settled me down. I am now on 12 drugs a day, and visit the clinic every 6 weeks, and am on a worldwide Vasculitis study, carrying an infection or relapse card, so if anything goes wrong, I can be in contact with them 24/7. Sorry about long rant. Acker :thumbsup:

[acker]

Hi Geoff, thanks for your reply mate. I would love to know more about the pub lunch, as I do enjoy a pint or nine. I'll give you my phone No's so we can get in touch about it, if you like ?
Cheers Acker :thumbsup:

I edited your post and sent your numbers to Geoff in a private message. Its generally not a good idea to put private information like that on the public side of the forum. Cheers, VW

[acker]

Hi Michelle,
Thanks for your lovely reply, I only joined yesterday and someone has invited me to a meet up already, it's great I should have got on this site earlier, you are all Brill :thumbsup:

[acker]

Hi Steve, It's great to hear from a brother biker, and it's good to hear there is so much help and support out there. I've started to make friends on here already. Ride safe.

Acker :thumbsup:

[acker]

Hi Mike,
Nice to hear from a fellow rider, Yep slow and steady does it you're right, thanks for the tip on spelling mate.
Ride safe
Acker :thumbsup:

[acker]

Hi Thanks for your reply, Wow !! I didn't know there was so much support out there, it's wonderful. I only joined yesterday and I have been invited to a meet already. Thank you, thank you, Everyone.
Acker :thumbsup:

[freakyschizogirl]

Geoff's a social butterfly and loves to meet new Weggies :thumbsup::flapper:

Its amazing how you can go from feeling like you are the only one in the world going through what you are going through and then finding out that you're not alone and actually there are more people out there that understand you than you thought.

[Geoff]

Easy up Sam, i did apologise for scareing you a bit when i plonked myself down next to you in clinic at Adds!
I have to confess that all of the meetings i have had with fellow weggies have been life affirming. So many wonderful people out there!

[acker]

Geoff's a social butterfly and loves to meet new Weggies :thumbsup::flapper:

Its amazing how you can go from feeling like you are the only one in the world going through what you are going through and then finding out that you're not alone and actually there are more people out there that understand you than you thought.

Yes it's really great to know you are not alone, I felt that I couldn't talk to my friends about it, as they didn't understand, and also kept telling me how well I looked while my brain was going mad, and I felt so lonely and depressed. As I live on my own, and didn't have anyone to come home to and confide in, in, just seemed like the pressure was ramping up all the time.

I have given my phone No's to Geoff, and had a chat with him this morning, and like everyone I have contacted on here, he sounds like a great chap !!. Acker x x

[Geoff]

Great to catch up with you Acker and looking forward to next months meeting down at the local near Bedford. They are a interesting group of Weggies and will be delighted to meet you, as will I. Your journey left me a bit stunned. I am amazed at the inner strength that comes into play when the chips are down.
Take care my friend, all the best.