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..
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
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..
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!
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.
Last edited by annekat; 08-07-2013 at 03:28 PM.
Anne, dx'ed April 2011
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 .
Diagnosed March 2001 ... WG Involvement - Ears . Sinus ( saddle nose) , eye ( blind Left )
currently on 5 mg Pred , Myfortex 6x360mg/d , Fosamax 70mg .
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.
Danica
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.
My blog: Animo
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