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7 years ago today I became a member of this elite club
Seven years baby.
This was the day I got wheeled into an empty surgery theatre for a lung biopsy, complete with a pathologist in the room (it was a Saturday and they opened it up for me - aren't I special ) and a couple hours later I was one diagnosis richer. Ha ha.
Despite the nature of the diagnosis, which bought me this elite club membership, it was much much better knowing the beast that needs to be tamed than not knowing what's wrong and having medical pros roll their eyes at your/my incessant requests for help.
At the time I had no idea how drastically this would change my life. Your initial feeling is that it's a change for the worse, but in fact it has become a change for the better. Totally counter intuitive, but true. I have said this before and I'm going to say it again. I have gotten way more from this disease than it has gotten from me. I could sit here and list off all the positive, wonderful things I have gotten from it, but I won't bore you with my Pollyanna perspective. You can all acquire your own and remember to enjoy every single moment of peace and no pain that you get. (There's one of the benefits from the disease, perspective we never had before getting sick.)
This forum saved my life, physically and emotionally and I have so much gratitude for Andrew for starting it, and all of the participants on here for their support, knowledge, wisdom, kindness, non-judgement, and empathy. Together we are invincible. Never forget the power we hold in us just from having gone through this experience.
Lots of love, healing and energy to you all.
marta
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Good on you, Marta!! I feel the same way about what this disease has done for me...
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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Ditto.
I don't think I could go back.
This disease has shown compassion and awareness, and also given me some amazing friends from all over the world.
I'm glad you are here Marta
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
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I am so glad you are here with us on your anniversary. Our journeys would have been a whole lot tougher without each other. I'm glad you are doing well and hope you continue to gain ground against this unpredictable disease. We all feel stronger together, thanks to Andrew. Please take care of yourself!
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
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"Thank you you beautiful people" as my mom would say.
I'm so glad we have each other. I know that this site is like a dear old friend. When life gets in the way and you don't have time to stop by for a coffee and a 'hello' nobody will judge you or stop being your friend. You come here when you either need help or feel like sharing some advice, and getting/giving some support (depending on the number of spoons you have that day.) I love knowing that it's here, and that all of you are there behind your keyboards, knowing exactly how I'm feeling on any given day because without a doubt, you've been there at some point.
I like what you said Michelle, "I don't think I could go back." I totally agree!!! I loved my life before, but I feel like I'm a better person because of this disease (weaker physically, but much stronger in the brain,) and going back would mean loosing all the priceless lessons from the last seven years, and they truly have been priceless. I also couldn't imagine giving back all the amazing friendships I've acquired because of this experience. We all have PhD's in WG, just go and talk to a regular doctor about Wegener's and see how much more you know about it than them, ha ha ha. I love knowing more than my doc about a medical condition. I also kinda dig being published in a medical journal about WG, knowing that this is something that most GP's will not experience. Ha ha (that's a little ego talking.)
Lots of love to you all.
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"Together we are invincible. Never forget the power we hold in us just from having gone through this experience."
Great quote Marta! I totally agree that this disease has given me so much, some bits are tricky to handle but I know personally I am a changed man (for the better I hope!) in how I percieve Life, its true value and meaning.
Never waste a moment, life is precious, do what you can when you can, if you are able then do it!! and SMILE!!!!
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Leigh, I understand your point of view. Some of us have more severe issues with WG, have had it disrupt our lives more than others, and some have died from its complications. I feel it has brought me many new friendships and educated me along the way, but I have never been in grave danger or extreme pain as some others have. I would at least like to go back to when I first could have been dxed but wasn't, 2.5 years before I was, and been dxed then so as to avoid some of the damage done to various parts of my body. Anyway, I don't blame you for feeling as you do, and am glad to see you on here once in awhile.
Sent from my MotoE2(4G-LTE) using Tapatalk
Last edited by annekat; 07-04-2017 at 03:05 AM.
Anne, dx'ed April 2011
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Re: 7 years ago today I became a member of this elite club
I believe its a balance for me, the worst thing is the affects, pains, problems and operations are levelled out by the person its turning me into. I used to work all hours and neglect my family and friends. The best thing its done for me is value life its self and the people i love and i cant put a price on that.
I would go back as far as i could to right the wrongs, but in fear of losing what i have now not a chance... i am stronger, i have more love, however the body amazing as it is... is rubbish and broken. Cherish every moment and the people that love you!!!!!
Sent from my SM-G930F using Tapatalk
Ben
Diagnosed in 2013
Never, never, never give up! (Winston Churchill)
What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)
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Re: 7 years ago today I became a member of this elite club
Marta: I was just talking to Alysia about how vaccines initiated your Wegener's. I'm trying to find everyone I can with the same story as yours and mine. Vaccines also caused my WG. Do you know anyone else? Have you ever done more background on that? Thank You
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Re: 7 years ago today I became a member of this elite club
Originally Posted by
crowneagle
Marta: I was just talking to Alysia about how vaccines initiated your Wegener's. I'm trying to find everyone I can with the same story as yours and mine. Vaccines also caused my WG. Do you know anyone else? Have you ever done more background on that? Thank You
Yes, I have done a lot of research in this matter. Too much for a mere mortal, ha ha. My doctor agrees with me too. There are papers supporting this in medical journals, there is a whole conference in Europe, I think it might be taking place right now, and it's rheumatologists, immunologists, and researchers, who are linking autoimmune disease with vaccines. The insert of the GSK H1N1 vaccine that I was immunized with, on page 7, in very small print, actually states the word Vasculitis as a potential rare side effect. I believe they have since removed it.
Wegener's Granulomatosis an auto immune disease, and two things are known about autoimmune disease with certainty. 1. There is a genetic predisposition. 2. There is always a trigger.
That trigger could be viruses, bacterial infection, environmental agents, and yes vaccines. The way a vaccine works is that it induces an immune response to a neutral virus (and in some cases live, and with those vaccines you should never ever get while on treatment for your WG because getting chicken pox while on immune suppressants can actually kill you) so that if you're ever exposed, your immune system remembers that virus and your B-cells can launch an attack against said virus much quicker and prevent it from taking over and potentially killing you. In people with genetic predisposition to autoimmune disease (a disease where your immune system attacks healthy tissues, organs, and/or systems - in our case blood vessels of a certain diameter) a vaccine is quite potentially that trigger that the body needs. It might not be in everyone, and yes, some have their trigger a virus, or mould, or a bacterial infection, but some did indeed have a vaccine trigger their disease.
I know a few other people personally who feel the same way. I Canada the reporting of vaccine side effects is designed to be super cumbersome and in fact is almost as if they don't want reporting of vaccine side effects (unlike any other drug where you can report negative side effects online) PM me and I'll send you some links to stuff I've researched before.
I would absolutely love to talk to you about this, but I'd like to do it in private, as I get sucked into yucky conversations when people who don't agree jump into the discussion. I have no problem discussing any view as long as it comes from a factual basis and is not initiated to just provoke.
Last edited by marta; 11-23-2017 at 10:12 AM.
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