7 years ago today I became a member of this elite club

[marta]

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

[Pete]

Good on you, Marta!! I feel the same way about what this disease has done for me...

[mishb]

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 :love:

[Jaha]

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!

[marta]

"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.

[Geoff]

"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!!!!

[delorisdoe]

'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.

[annekat]

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.

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[meganjean26]

'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.

I with you. I get mad when people are like things happen for a reason and this will make you stronger. There has been NO good reason or outcome from my wegeners. And it hasn't made me stronger. I'm weaker and honestly exhausted and personally don't handle pain well at all anymore. I would go back to before wegeners too! I hate it everyday of the week too but I do find that being positive and optimistic helps me heal. I'm in the middle of a relapse now and it sucks. Of course when it gets bad and I can't breath and I'm coughing up blood positive is the last thing on my mind but in general positivity I believe speeds recovery. Good luck to you, hang in there and live it up when you get those good days!


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[BenHornsby]

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!!!!!

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[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

[meganjean26]

Vaccines did NOT cause our wegeners. Viruses are know to potentially set off the cascade of events to onset and relapse of autoimmune disease. I️ am certain this is the case for the onset of my wegeners and at least 1 relapse. Vaccines protect us from viruses. Please get your flu shot. I️ also recommend a pneumovac. Influenza and pneumonia can be a severe lung infection especially for us wegeners patients with lung problems.


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[marta]

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.

[marta]

Vaccines did NOT cause our wegeners. Viruses are know to potentially set off the cascade of events to onset and relapse of autoimmune disease. I️ am certain this is the case for the onset of my wegeners and at least 1 relapse. Vaccines protect us from viruses. Please get your flu shot. I️ also recommend a pneumovac. Influenza and pneumonia can be a severe lung infection especially for us wegeners patients with lung problems.


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It drives me NUTS when someone who doesn't know my story, or me, or the science, tells me that I didn't get my Wegener's from the vaccine.

Truly drives me nuts that people can be so stuck in their positional bubble that they choose to negate someone else's experience so they can remain cozy in the comforts of their belief system.

Something good that has come out of this disease for me is that I've learned so so much. I've read more medical journal papers than I ever did in University. I've been proactive with the healing and knowing as much as I can, including what caused it so that I don't repeat any mistakes, and hopefully help someone else from falling in the same trap. I can sit and talk with doctors as equals on this particular subject now, and it is empowering. I feel stronger now than I ever have before WG, not physically, but mentally, as I would never have questioned a medical specialist before, and together end up coming up with a much better way to find the answer to a medical question were seeking.

It all comes from having an open mind and being curious, and respectful instead of telling someone their experience did NOT happen because it doesn't jive with my world view.

P.S. I'm protected from PCP pneumonia by using the antibiotic Dapsone (as I'm allergic to Bactrim, the other antibiotic used to protect immune suppressed patients from PCP pneumonia.)

Funny Side Note: Our B-cells are the ones that keep the memory of the diseases and vaccines we have had. When you have a Rituxin treatment (A.K.A. B-cell ablation) you have lost all of the vaccines that you've had since the memory lives in the B-cells that you're flushing down the toilet the few days after treatment. Funny, right?

[marta]

This is not the usual me in the above post, but it's a topic that really hits a nerve. I'm sorry but I have to challenge the idea that because you don't agree with me somehow gives you the right to negate what happened to me. I challenge this because in my view, this is the one place (this forum) we should be able to come and express our experience in a safe environment where others don't get to tell you it didn't happen to you that way because it didn't happen to them that way. A type of belittling quagmire often experienced in the outside world when it comes to this disease.

I don't want to come off sounding like a jerk, because I started to talk on this thread about the great things that have come out of this disease, but herein lies one of the gross things that have come from this disease. After spending years researching and connecting dots, I still get a knee jerk reaction to people who 'believe' in vaccines so vehemently, as if it was some sort of religious entity, jumping on me and trying to take away my history because it challenges their belief system. I've stopped talking about vaccines for this exact reason.

[BenHornsby]

This is not the usual me in the above post, but it's a topic that really hits a nerve. I'm sorry but I have to challenge the idea that because you don't agree with me somehow gives you the right to negate what happened to me. I challenge this because in my view, this is the one place (this forum) we should be able to come and express our experience in a safe environment where others don't get to tell you it didn't happen to you that way because it didn't happen to them that way. A type of belittling quagmire often experienced in the outside world when it comes to this disease.

I don't want to come off sounding like a jerk, because I started to talk on this thread about the great things that have come out of this disease, but herein lies one of the gross things that have come from this disease. After spending years researching and connecting dots, I still get a knee jerk reaction to people who 'believe' in vaccines so vehemently, as if it was some sort of religious entity, jumping on me and trying to take away my history because it challenges their belief system. I've stopped talking about vaccines for this exact reason.Marta your not a Jerk... I can't comment on it as I know so little, but I do know it's very possible and try not to be too sensitive about the unenlightened minds... it has got me thinking about it and will look into my history a bit more... thanks and don't stop talking about it.. x

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[seied]

I had no vaccines in the last 2 years, and I contracted GPA in July/August.
I don't like vaccines and I do take them, but I never take the flu shots.

Having said that, there is no way to predict if a vaccine could or could not trigger GPA on someone.

If someone were to contract GPA from a vaccine, would that be the fault of the vaccine? Doctors? Labs?


Ed.

[marta]

Thanks Ben. I don't think I'm a jerk either, but I do know that this topic really hits my hot button, and with each passing year, I have less and less patience for naysayers who have nothing but opinion to base their comments on. I'm not trying to convince anyone about anything. I'm reporting my story and the research that I've done based on my story, and the evidence I have found. Everyone is entitled to make their own decisions, I'm just hoping to give a perspective to consider that most doctors won't talk to you about. There is a thing called NNT (number needed to treat) - in how many people getting treated with a medication for a year does it take to help one single person... it's part of the risk/benefit assessment we all need to be part of for each medication we accept to put into our bodies and it needs to be weighed against possible side effects rate. It's not easy being an educated patient, but is sure is empowering.

Ed, I'm sorry you've got the WG bug. I don't like vaccines now either. Especially the 'make-them-quickly-and-create-a-fake-need-for-them-vaccines' (like seasonal flu shots, HPV vaccines for non sexually active children, etc.) with minimal to non existent long term side effects data. I know they pulled us out of the dark ages, and I don't have a problem with the old true blues. The ones we have had for generations that have endless long term data.

There is no way to predict if a vaccine will be a trigger. The only thing that I operate under is that now that I know there is a predisposition to autoimmune disease in my family (mom, dad, and only sister all have autoimmune diseases) I know that the only other factor I need is a trigger. Personally now I know that vaccines trigger an overboard immune response in my body that doesn't know when to quit, and then decides to stick around in the form of Vasculitis or more precisely Wegener's. So I avoid it all together. I know also that my daughter is predisposed (being my daughter) so I avoid the fly by night vaccines that society is guilted into using. She's had all the basics, but nothing superfluous.

I think that's the thing I'm trying to convey to people. If you happen to know that autoimmune predisposition is a possibility (like blood line relatives dealing with any of the 140+ autoimmune diseases or disorders) then make more informed decisions than the general population (however it must be noted, that 1 in 5 people have autoimmune diseases or disorders, so statistically that means we should all make informed decisions on how we play around with our immune response.)

The last question. Vaccine makers have padded themselves quite nicely against litigation. There is no fault with vaccines. There are some countries that have financial pots to help victims of vaccines, however in Canada, where I'm from, this is a non entity. Vaccines are exempt from litigation, or wrongful doing. The reporting adverse side effects process in Canada is clearly designed to prevent reporting of vaccine side effects. Generally speaking, if you're injured from a vaccine, tough luck. Nobody takes fault.

[marta]

'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.

I remember from our previous conversations, years ago, that we were even then diametrically opposed in how we perceive this experience. So I'm not surprised to see this comment in reply to mine.

Reality is 100% subjective. We choose how we perceive an experience.
We choose what aspects to focus on, and what kind of 'judgement' we impose on them.
It all comes down to where in the levels of consciousness we tend to bobble, and one is not better than another, it's just what it is.

Pain sucks. But it's part of the human condition. Adversity and challenges suck. But they're part of the human condition. These moments are given to us as gifts, in that we can chose to wallow in self pity, or we can choose to rise above it. It's all a choice. And every choice creates new karma... you either add to your debt, or you pay some off.... your choice.

You can't change the past, but you can change the future.

I have to say that I wholeheartedly and with all sincerity hope that you find peace and acceptance in this process and that the good always outnumbers/outweighs the bad.