Mav forum resources

Ok I’ve noticed a trend GOING ON AROUND HERE.
Know one seems to be using the search button to look for old post pertaining to their symptoms ect….
Adam and Scott have spent 100’s of hours of their own time putting together files,
They have graciously posted them permanently on the front of this MAV site for us to read.

So please take the time to read them for yourself.

If you are worried about a med causing an allergic reaction its best to call you local ER.
Waiting to get feed back form a forum is down right DANGEROUS.
We are not DR’S.
And shouldn’t be giving away emergency medical advice!

Please use the search device
And as Julie said.

Read the stories of other members of this forum, or some of the threads besides your own, and you will find people in much worse shape than me, or you. As well, you will find many of your questions answered - this forum is like an MAV encyclopedia.

jen :shock:

Thanks Jen, i’ve been meaning to post those very words “we’re not doctors” in some threads coming in lately. I think i will go do that.

better you than me julie because I’m in a real pissy mood right now!!! :twisted:
thanks
jen

But i would hate for people, especially these sweet new people thinking that they can’t ask questions, and have to do searches before posting threads. I love interacting with people and helping them through this mess. So please, if any of you are reading this thread, keep asking questions, it’s a joy connecting with you.

Jen is not referring to you.

Yea Julie ,
my piont exactly
This forum is for that!
Asking questions.
Getting together a venting.
All that stuff is fine.
But medical advice is dangerous business.

And getting to know about your own illness should be every ones priority!

jen

The point of a forum is not to get medical advice but to get the comforting “advice” from someone who may have experienced the symptom before. I know that many times in the last year I have turned to forum members asking if they have ‘felt this’ or ‘experienced that’ so that I could a). Know that I am not alone and b). understand that what I am feeling probably has something to do with this dreaded inllness.

And finally, I truly believe that collectivley we know more about our illness than many Dr.'s do. For example, if not for the fact that I read all these posts I would never know about veramapil being so helpful. Do you think a Dr. suggested that medication for me? Nope!! I found out about it from the forum, requested it from my Dr. and it has really helped me. So there you have it. I owe it to the “medical advice” of these forum members.

— Begin quote from “jennyd”

If you are worried about a med causing an allergic reaction its best to call you local ER.
Waiting to get feed back form a forum is down right DANGEROUS.
We are not DR’S.
And shouldn’t be giving away emergency medical advice!

— End quote

You’ve missed the point HT, did you read the above quote?

Jen said not a thing regarding asking general medical questions, but emergency medical questions.

Okay, sorry. It’s just if someone was having a true emergency I doubt they’d run to a forum. So I lumped it together.

well, guess again, read the threads.

HT,

Thank you for editing out the hostility towards me and Jenny in your original post, even though it makes my response to you seem nonsensical.

Julie

sorry I"m from Australia and missed this one because I was sleeping.
jen

OK, Halfthere, first of all
If you had been frequenting this forum for awhile or if you had read some past threads, you would know me better than that!
I am always happy ready and willing just as Julie is, to answer questions
with loving open arms. In fact Julie warmly claims that I am an encyclopedia of MAV internet links and love to share them.
This forum is like my second family, thats how I feel about most of the people on this forum.
I CARE!!

I agree that the writing in my first post was not phrased well but there is some important information I would like to convey to the general forum before I put it behind me as a lesson learned.

OUR moderator is not well at the moment and doesn’t spend every waking minute of his day watching over us.
He has a small child and a family to worry about.
So I thought I’d point out some facts:

1: USE THE FILES AND SEARCH BUTTONS OUR MODERATOR HAS SET UP AND PROVIDED US WITH.
THEY HAVE A WEALTH OF MARVELOUS INFORMATION ON OUR DISEASE. I HAVE LEARNED SO MUCH THIS WAY.

2: GO IMMEDIATELY TO YOUR EMERGENCY DEPARTMENT IF YOU CAN’T BREATH OR ARE SUSPECTING IMMINENT DEATH! DON’T WASTE TIME WRITING TO A FORUM.

I wasn’t trying to put people off asking questions or having some comforting "advice”
That’s what we are here for.
and I’m sorry if I did so. That wasn’t my intention.

In my post before your insults (which you edited out)
I thought I had clearly explained that.
Thank you for your input Halfthere.
I am aware of your feelings from now on.
jen

Whoa! Can we please not overreact and be insulting.

— Begin quote from “jennyd”

I agree that the writing in my first post was not phrased well but there is some important information I would like to convey to the general forum before I put it behind me as a lesson learned.

— End quote

Yes, Jen, your words did come off a little harsh. I totally agree with your message, but the tone that came across was harsh. I believe that is what Halfthere responded to.

— Begin quote from “jennyd”

In my post before your insults (which you edited out)
I thought I had clearly explained that.
Thank you for your input Halfthere.
I am aware of your feelings from now on.

— End quote

I read Halfthere’s post before her edit. I didn’t read any insults, just support of others.

I truly believe this was a big misunderstanding. It is often hard to read someone’s tone through written words. Can we try to put this behind us and be kind and respectful to each other going forward. I would hate for this to become one of those sites where people don’t feel safe to share their experiences. Thanks! :slight_smile:

— Begin quote from “MarciM”

Whoa! Can we please not overreact and be insulting.

— End quote

Marci, what did you find overreacting and insulting about Jenny’s post?

Did you think that dissecting Jenny’s post was an effective way to put this behind us and move forward (paraphrasing what you said)?

If that’s what you wanted, you should have left it alone.

Halfthere’s post was insulting before she edited it.

Julie

thanks for your calming input Marci.
jen

— Begin quote from “Julie”

— Begin quote from “MarciM”

Whoa! Can we please not overreact and be insulting.

— End quote

Marci, what did you find overreacting and insulting about Jenny’s post?

Did you think that dissecting Jenny’s post was an effective way to put this behind us and move forward (paraphrasing what you said)?

If that’s what you wanted, you should have left it alone.

Halfthere’s post was insulting before she edited it.

Julie

— End quote

You’re kidding, right?

I asked a simple question and I get sarcasm. you think that’s a more effective way to leave this behind and move forward?

— Begin quote from “Julie”

I asked a simple question and I get sarcasm. you think that’s a more effective way to leave this behind and move forward?

— End quote

You didn’t just ask a simple question. You chose to be rude and argumentative. Believe it or not, I was sincerely trying to smooth things over with my previous post. My attempt was obviously ineffective. I apologize. You win. I’m done.

I’d just like to say,
I’m sorry for making trouble amongst every one.
It wasn’t my intention to hurt any new people’s feelings.
When I first came to this forum, it was barely active not very many people
Now it’s thriving and it’s wonderful.

So I apologize if I was insensitive in anyway to anyone.
Lets just let it alone now please.

jen