How it all began..

[Anth]

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 :tongue1:

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]

Hi Anth
It is a pleasure to meet you too. Thank you for sharing your story and I did read every word:biggrin1:

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]

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]

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]

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]

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.

[marylz]

Hi Anth,

Thanks for sharing your story. It has helped me to know that there are others going through similar things that I am. I am sort of a newbie and am already so sick of being sick, but I know I just have to keep following what the doctors tell me to do and hope it will turn out alright. I look forward to reading your posts and getting to know you better. Hang in there!

[woz]

Hi Anthony, Its good to meet another Aussie, I also had something similar to you at the start. My shoulders started to hurt, then the sinus infection, and the spitting of blood. then the aches would travel around my body, my toes on one foot, then to my right elbo, then to my knee, my hip, one thumb, and so on. I was lucky to have the best nurses, and doctors. The hospital I was in is very old, and in need of a facelift, but the nurses and doctors I couldn't fault. Because of being diagnosed reasonable quick, helped me get to were I am today, still chemically enhanced, but hopefully heading in the right direction. This forum is the best place to find and give out information, and ask lots of questions,( make sure you do, as most of the people here know more than most doctors, excepting the ones who specialize). Just like you, most people here have experienced this weg monster, either personally, or seen a family member or friend go through the pain and suffering, so its good to talk to someone who knows firsthand, what its really like.

All the best on your road to recovery.

Woz.

[drz]

I remember some early advice I got from another Weggie shortly after my diagnosis and when I realized I was probably going to live after all. He said "You will get sick and tired of being sick and tired, but with treatment things do tend to get better so hang in there and be patient."

[Anth]

Thank you all for your kind words and support! I'm glad it was an enjoyable read.

Its good to hear and read of other peoples stories its really helping with dealing with things.

[Anth]

Hi Anth
It is a pleasure to meet you too. Thank you for sharing your story and I did read every word:biggrin1:

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!

[Anth]

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]

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]

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.

Hey annekat,

I learnt about all that stuff about silica even before i got sick because the tiles and glues we use have silica in them but who knows.. thats sort of why i've distanced myself from tiling. i only help my mate when we dont do much cutting or if there is he does it.
I rack my mind trying to figure out how and why but i know if i keep going I'm going to send myself crazy..
I'd really like to know though..

[Anth]

Hi Anth,

Thanks for sharing your story. It has helped me to know that there are others going through similar things that I am. I am sort of a newbie and am already so sick of being sick, but I know I just have to keep following what the doctors tell me to do and hope it will turn out alright. I look forward to reading your posts and getting to know you better. Hang in there!

I think most of us are "newbies" when it comes to WG..
I know how it feels.. I'm also so sick and tired of being sick and tired.
As a newbie the best advice i can give you is to research and talk to as many people as you can. Never keep things inside. and dont be scared there is heaps of people to talk to that are going through similar things to you.

Best of luck!

[Anth]

Hi Anthony, Its good to meet another Aussie, I also had something similar to you at the start. My shoulders started to hurt, then the sinus infection, and the spitting of blood. then the aches would travel around my body, my toes on one foot, then to my right elbo, then to my knee, my hip, one thumb, and so on. I was lucky to have the best nurses, and doctors. The hospital I was in is very old, and in need of a facelift, but the nurses and doctors I couldn't fault. Because of being diagnosed reasonable quick, helped me get to were I am today, still chemically enhanced, but hopefully heading in the right direction. This forum is the best place to find and give out information, and ask lots of questions,( make sure you do, as most of the people here know more than most doctors, excepting the ones who specialize). Just like you, most people here have experienced this weg monster, either personally, or seen a family member or friend go through the pain and suffering, so its good to talk to someone who knows firsthand, what its really like.

All the best on your road to recovery.

Woz.

Hey woz,

Im glad they got it early. They also got mine early.. It didn't get to my kidneys which i was so grateful for.
Thanks heaps for the pointers. Wish you all the best on your journey also

[annekat]

Hey annekat,

I learnt about all that stuff about silica even before i got sick because the tiles and glues we use have silica in them but who knows.. thats sort of why i've distanced myself from tiling. i only help my mate when we dont do much cutting or if there is he does it.
I rack my mind trying to figure out how and why but i know if i keep going I'm going to send myself crazy..
I'd really like to know though.. Well, the trigger for your Wegs and mine could just as easily be something else besides the silica. I do take seriously the silica issue. I've always heard about silicosis, but that is a different disease than Wegs. I've been on forums with lots of potters and only remember hearing of one potter, a famous one, who got silicosis, and I don't remember ever hearing of one with Wegs or any discussion of it at all. Which of course doesn't mean potters and tilers haven't gotten Wegs because of that work. But I just don't think enough is known about it, period, for us to draw any direct connections. I've heard more often of Wegs being triggered by an unusual infection, such as the severe ear infections that many of us have had at the onset, though I don't know if these infections happened before Wegs or as a result of it, say because of the inflammation blocking our eustachian tubes so that the fluids can't drain. Wegs itself is not an infection, of course, but could be the immune system's over-reaction to the infection, and then something makes it keep attacking us after the infection is gone. Or the trigger could be a virus or an injury or anything that gets the immune system's attention, I guess. And maybe something in our past made us more susceptible to this triggering event. All we can do now, really, is deal with it once we have it, and hope they find out more about the causes and how possibly to cure it, some way of making the immune system behave itself! And keep in mind, if I sound like I really know a lot about this, I don't! These are pretty much musings based on what I have read on here from people who know more than I do.

[Natalie]

Hi Anth , wow I was right there with you on the scariest time of your life thanks for sharing your story, mine is similar in the fact I was young and free(19 when i first started getting symptoms) loving life and all it had to offer . Im 34 now and **** it's been a long tough road with ups downs but always looked on the bright side of things .. I had to as you say for your family and friends around you . Never thought I would be standing where I am now looking at the lights at the end of this wegs tunnel but I am . Keep moving farward and dont get down for to long we have so much to be grateful for . :)

[Danica]

That was a very moving, emotional and some what familliar story. Isn't it amazing how when you find yourself lying there in the hospital bed you feel you must be strong for your loved ones. Itmust be a natutal reaction or something. We all must have done it at some point.

The only advise i can give you is stay positive, keep smilling even when you have to fake it at times and live each moment to it's fullest. :thumbsup:

[Barbara N]

Your story was very well written and interesting but very sad. It sounded so familiar, I think most of us went through similar things unless we lived in a big city and had doctors that understood rare diseases.My doctors didn't have a clue and still don't really except one doctor who discovered it. The generel feeling is that they can't cure me so they will keep me comfortable until I die which means morphine and all sorts. I ride my horse for therapy and it really works. It is not riding out in the campo it is like yoga on horse back. I ride bare back while someone has a rope tied to the horse and I go around and around doing exercises and yoga breathing at the end I do about 15 min at the canter and that seems to get rid of all of the toxins and make my blood levels normal again. The doctors don't believe it but now on almost all of my prescriptions ir says to ride my horse.

[Alysia]

.My doctors didn't have a clue and still don't really except one doctor who discovered it. The generel feeling is that they can't cure me so they will keep me comfortable until I die which means morphine and all sorts.

Dear Barbara,
it is time to change your docs. don't stay with them if they don't realy treat you. find another doc, experienced one. there are treatments that can help you.
your horse need you for many years so you must take care of yourself.

[Linda22]

Barbara, I agree with Alysia you need to find another doctor that knows what he is doing. Don't give up, life is too precious!!!

[Linda22]

Hi Anth, thank you and I am sure he is watching over all you weggies, and if I know Brandon he is really giving the doctors a heard time

[goosey]

Hi Woz, just read your post & being from Sydney too I was wondering if you were talking about Concord hospital. They have been treating me now for 2years & the doctors & nurses are just wonderful to me.
Believe me it makes such a difference. I remember the joint pain & hope it wont come back when I'm off the pred.

[woz]

Hi Goosey, I have had all my treatment, in my local Hospital, Up here in Lismore(northern N.S.W.). It is only a very small Hospital, compared to Concord, But the level of care is comparable with any five star hospital, anywhere. I an nearly off pred, I'm down to 3 mg, 3 more weeks, then its party time. How long have you been on azathioprine, and how much do you take?

Regards woz.....

[goosey]

Hi Woz, the doctors say I'm now in clinical remission, anca down to 0.5. right now I'm on 5mg of pred, have been on that now for a bit over 6mths. Will be seeing my wegs dr next week so i may be able to go down to 3mg. I have been on aza now for 18mths, I started on 25mg twice a day to see if i could tolerate it ok. I'm now on 50mg twice a day, I'm guessing I'll be on it for a long time & hoping my remission will last as long as my dad's (13yrs).The drugs he was on were not as good as they are now so the longer we live the more they will find out about this horrid wegs. I did get gastro at the begining of this year & was in hospital for 6days as it would not go away. They had to take me off aza & it cleared up the next day.
Cheers Goosey.

[woz]

Hi Goosey, My anca level is now in the normal range, and my blood work is all good, I'm only seeing 1-2 doctors per month, compared to 2-3 every week. Are you seeing a weg specialist in Sydney, or like me and see many doctors ( 5 Specialists, plus my GP). I would be interested to see if Australia has any weg specialists. Is it any more advantage to take aza 50 in the morning, and 50mg at night. I was doing that and my doctor said I can take it in one dose if I like.

Regards woz.....

[goosey]

Hi Woz, I only see one doctor at Concord ,every 3mths now,unless something goes wrong with me & then I ring the immunology dept. & they will contact me. Yes they do have Wegs specialists at Concord & they also cover other autoimmune diseases as well. I must google it to see if there are any more around. I'm going to Concord next Wed so I'll ask about taking aza in one dose & see what they say. I do have a very good GP & as I have to do bloods every 6weeks the results are sent to her as well as Concord so if they are a bit off my GP rings me. I like to know everything my body is doing now.
Cheers Goosey.