How it all began..

**Anth** · 08-03-2013, 06:44 PM

Hey everyone!

I've been on this site for a year or two but really haven't been a computer kind of person so i haven't spent much time at all on here. Since then though I've realized that its really hard dealing with something like WG all alone..

Let me start by introducing myself. My name is Anthony and i live in Melbourne, Australia. I'm 26 yo (my birthday is the 28-5-87)
I like to think of myself as an out going outdoorsy type of person. I think life isn't life without hobbies so throughout my life i have taken up plenty.. Camping/Hunting, Fishing/Boating, Motorbike riding, Bmx riding, Soccer and Motorsports/Car racing.
I also have a huge love for animals and have always had a tone of pets.. birds, cats, dogs, snakes, turtles, lizards, scorpions, and whatever else i could collect when i was younger.. Now i just have my best friend Nismo the English staffy.

I went to an all boys catholic school in Preston and after finishing year 12 and not knowing what i wanted to do i started working a few days a week helping out my best mates dad who was a tiler.
After helping out for a couple months my mates dad asked if i wanted to start an apprenticeship with him.
It was an easy decision for me to start with him because he paid very well and was an excellent boss. I was also crazy into my cars and bikes so needed cash to fund that..

During this period of my apprenticeship i went overseas with my best friend and another 3 other good friends of ours (I told you my boss was excellent!). We traveled all over Europe for two months doing all the things fresh 20 yo do!! The places i visited where.. Greece and its islands, Croatia and its islands, Italy from the south to the north, Nice then through to Paris, Spain and its islands and cities then to Netherlands Amsterdam and home from there..

After finishing my apprenticeship with my best friend who also started working at the same time as me with his dad we decided to start our own company.
Because we did really high end stuff during our apprenticeship ($7 million RENOVATIONS! and mainly doing a lot of marble and granite work which means tiles around the $300-$500 mark a meter)
we had plenty of connections and had a lot of work coming in.

So to came another holiday.. My Brother (who is 18 months younger than me) and my first cousin (who is 1 month younger than me) wanted to go on a trip.. so i had to go along to show them the ropes

We did all of Europe again but a few different places and had a blast!!

By now I'm almost 23 or there about..

After coming home from that trip I started thinking I wanted a career change. I didn't mind tiling but it was mind numbing.. My mind wasn't being stimulated at work and this was a real problem for me because i like to work my brain just a little bit..

So i asked my best friend if i could have a month or two off just to clear my head and see if tiling was something i really wanted to stick to.

I didn't have to make the decision to get out of tiling because WG made it for me.

During this month of clearing my head i wasn't feeling like myself. Getting niggling pains in my shoulders.. which lasted about two weeks. Then i started coughing up dry blood which went on for about two weeks and then my niggling pains progressed to acute pains in areas like my ankles, knees and elbows.
This went on for about a month and in this month i just thought maybe a had a throat infection or a flu..
I went to my GP who tested me and gave me antibiotics and told me there was really nothing wrong with me.. boy was he wrong.

I didn't have a clue at the time but in the following 3 weeks my whole world would come crashing down...

My pains got to a point where they wouldn't hurt anymore but would change around.. one day hips.. one day knees.. one day ankles..

Then one morning i just couldn't move.. i was crippled by the pain. i had to be dressed and carried to the car to get to the hospital.

I was in hospital for 2 weeks and a bit.. you could just say three weeks.
The first week was hell. Because all my tests would keep coming back negative for everything but i was still in pain the F-ing pig headed nurses thought i was pretending just to get pain killers!!
Mind you the only time i asked for pain killers was at night because that's when the pain would get really bad.
I was once in such pain i was crying and buzzing the nurse to come and help me and she looked at my through the window and walked off still in my vision to talk to a fellow nurse.. leaving me without pain killers for hours until i called my mother to come down who sorted it out.
she was just a real mole of a nurse and had a little gang of them going on in the ward. After this and after keeping me in an air tight room for 2 weeks thinking i had TB, that nurse got the ass, the rest of them got moved, i wasn't a lying junkie and they figured out i had WG..

This was the scariest time for me.. being in hospital that long getting worse and not knowing whats wrong with me was killing me.. The doctor came in by himself after i had about 10 doctors around me poking and prodding to say "Anth this is really serious.. Its called Wegeners and if we don't start you on drugs now you have a 90% chance of not living out the month.."
I **** myself!!
But i was also relived that they had found out what it was.. i just said "okay well now we know what it is lets start doing something about it."
I had to keep strong.. my dad mother and brother where really bad.. i had to keep strong for them. I'm usually the strong one and looking after everyone.. this time it was the other way around.
No one knew how to handle it. If i fell apart, everyone would have. And that would have made me worse. So i stayed strong so they could also which in turn would help me..

Now its been just over 3 years for me.. I haven't had much progress by way of health. My bloods are always high but they have been like that from the start. Even after doing the course of cyclo and the rest of it..

I don't do anywhere near what i could before. I gave up riding as much as i love it because my body isn't strong enough anymore as to with soccer.. i still fish but not as much because its hard work and the body cant handle it and the rest i just don't have the funds..

I've been unemployed for the majority of the time i have been out of hospital. I occasionally tile with my best friend but only if he has easy jobs which isn't a lot.. I cant really stand up on my feet all day so i cant really do retail and i don't have any other qualification so I'm a bit lost with what to do..
I said to myself i would concentrate on getting better and take advantage of still living at home with the parents and ill get a job once i am better then start my life again.. Needless to say it hasnt been that easy and the more time passes the more I'm realizing this is going to be a tough and long road which also doesn't help with feeling depressed..

I think everything happens for a reason.. I'm yet to figure mine out but I'm sure i will with the help of my soul mate (My girlfriend Katie) who has been the best for me through this time and the friends i hopefully make through here!!

Sorry for the really long post guys.. Ill forgive you if you skip some of it

For those of you that did read thanks heaps and please leave a comment if you'd like. I'd love to hear from you.

Pleased to meet you!

Anth

**Linda22** · 08-03-2013, 08:55 PM

Hi Anth
It is a pleasure to meet you too. Thank you for sharing your story and I did read every word

I experienced the same problem with incompetant nurses when my son was in hospital, but unforrtunately WG won and he passed away.
I am glad that you shared your story and we need to make people more aware of WG all over the world. You are part of a great support group here where you will get some very valuable advice and make some excellant friends.

Sending you all my best wishes and hugs from South Africa

Linda

**Alysia** · 08-03-2013, 11:16 PM

Hi Anth,
thanks for sharing. nice to meet you.
your writing is wonderful, very live and tangible

you were lucky enough the get diagnosis on time, before it was too late.
you are strong and the worse is over. but you are right that you now have to build your life almost from the begining, while considering your limitations because of WG. you are lucky to have your girlfriend to support you.
good luck and continue writing.

**mishb** · 08-04-2013, 12:09 AM

Hi Anth again.

Yes I read it through to the end. You have a wonderful flair for writing, not just on this post but in your other posts as well.
I don't know why you have been avoiding computers, I think it would be something that you are really good at.
It could even be something that could be a job for you.
I have an office computer job and find it a lot easier to rest the legs knees or feet, whilst sitting down on the job.

My roving joints/muscle pains where a little different than yours. I would have 3 days on and then 2 days off.
So 3 days of knee pains and then 2 days of no pain at all, and then 3 days of ankle pain and 2 days of no pain, then 3 days of shoulder or elbow, hip or thigh etc etc.
I really looked forward to the 2 days off and then knew by the time I went to bed on the 2nd day, that by 2 or 3am in the morning, it would be a different muscle or joint that I wake up to.

Gotta love WG

**rebekah** · 08-04-2013, 03:06 AM

It’s a pleasure to meet you too, Anth. Sorry to hear everything you have/are going through, but glad to hear you have a wonderful, supportive girlfriend. I'm 22 and just graduated from college, so I understand how hard it is to find a job that I feel I can do with weg’s while not over working myself. Like Michelle said, maybe an office job could do... maybe you'll even feel better and can get back to tiling, though I'm sure that is really hard on the body. But there are some people with WG that have gone on to do some awesome things, like Cindy who raced in the famous Iditarod a few months ago. I hope you get your health back soon, so you can get back to doing some of those fun activities you miss too!

**annekat** · 08-04-2013, 11:34 AM

Anth, I really enjoyed reading your story of things you've done in your life and what you have gone through since getting Wegs. I'm sorry you haven't made better progress in 3 years; maybe you should make sure you have the best possible docs and that they are consulting with known Wegs specialists. I'm sure the Aussies on here have and will give some pointers on where to go for the best treatment near you.

Just a word about tiling; I'm assuming you mean ceramic tile and that kind of work might mean constant exposure to silica dust, depending on how much cutting, etc., of the tile you are doing, and how much protective gear you were wearing. Silica dust has been indicated as a likely trigger for Wegs. I am a potter, and am aware that my exposure to the dust from my clay and glazes may have something to do with me getting Wegs. But it is not the only consideration, there are other possible triggers or pre-dispositions I can think of, and not everyone who works around silica dust gets Wegs, nor has everyone with Wegs been around silica dust. They still don't know conclusively what causes some people to get it and others not to. I just thought I'd mention it in case you weren't aware of the silica dust issue.

**Anth** · 08-05-2013, 03:33 PM

Originally Posted by rebekah

It’s a pleasure to meet you too, Anth. Sorry to hear everything you have/are going through, but glad to hear you have a wonderful, supportive girlfriend. I'm 22 and just graduated from college, so I understand how hard it is to find a job that I feel I can do with weg’s while not over working myself. Like Michelle said, maybe an office job could do... maybe you'll even feel better and can get back to tiling, though I'm sure that is really hard on the body. But there are some people with WG that have gone on to do some awesome things, like Cindy who raced in the famous Iditarod a few months ago. I hope you get your health back soon, so you can get back to doing some of those fun activities you miss too!

Hey Rebekah, I'm also sorry to hear about what you are going through.. I know how hard it is for a young person and you are way too young for this.. I know it feels like its unfair but you just have to be strong. Do as much reading and research as you can and speak to as many people as you can.
Talking to people is the best thing for taking a bit of that weight off your shoulders.
If you ever need to chat I'm only a button click away

**Anth** · 08-05-2013, 03:25 PM

Originally Posted by mishb

Hi Anth again.

Yes I read it through to the end. You have a wonderful flair for writing, not just on this post but in your other posts as well.
I don't know why you have been avoiding computers, I think it would be something that you are really good at.
It could even be something that could be a job for you.
I have an office computer job and find it a lot easier to rest the legs knees or feet, whilst sitting down on the job.

My roving joints/muscle pains where a little different than yours. I would have 3 days on and then 2 days off.
So 3 days of knee pains and then 2 days of no pain at all, and then 3 days of ankle pain and 2 days of no pain, then 3 days of shoulder or elbow, hip or thigh etc etc.
I really looked forward to the 2 days off and then knew by the time I went to bed on the 2nd day, that by 2 or 3am in the morning, it would be a different muscle or joint that I wake up to.

Gotta love WG

Thank you! I've never really thought about my writing.. I just write how i talk!
I' might actually look into it.. i wouldn't mind writing for a job.. there is something calming about it.

My pains now are sort of like how yours were. I'm good for a couple days then sore for a few. kind of why its so hard to hold down a job..

**Anth** · 08-05-2013, 03:19 PM

Originally Posted by Linda22

Hi Anth
It is a pleasure to meet you too. Thank you for sharing your story and I did read every word

I experienced the same problem with incompetant nurses when my son was in hospital, but unforrtunately WG won and he passed away.
I am glad that you shared your story and we need to make people more aware of WG all over the world. You are part of a great support group here where you will get some very valuable advice and make some excellant friends.

Sending you all my best wishes and hugs from South Africa

Linda

Im sorry to hear that Linda.. My thoughts go out to you and your son. Hopefully he is watching over and looking out for the rest of us weggies!