How it all began..

[Anth]

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!

[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.

[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.