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Thread: Creating an environment that is safe for all

  1. #1
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    Default Creating an environment that is safe for all

    In one of our threads we've been discussing the pros and cons of the flu shot. A couple days ago a member posted about a negative reaction to the flu shot. They had finally gotten into remission and tapered way down on pred after years of struggles. Within 3 days of getting the flu shot they found themselves in a severe flare, which has to be treated with high dose pred and maybe ctx. In addition two of their family members got the flu within the same 3 days of getting the shot. It was a great post and was done only to help others.

    After reading one or two of the replies the member deleted the post because they didn't feel it was a safe environment to share. This is not the first time that member has been on the receiving end of that type of thing in this group. They are no longer planning to post. This is a huge loss, as that person is very dear to me and has been a member for a couple years. They brought joy, compassion and kindness to this group and never--not once-- said anything judgmental or harsh to another member. When wounded by another's words they never struck back. They retreated.

    It is also a huge loss to them. Can you imagine losing the support of this group? I sure can't.

    I would like us to maintain an environment here that is safe for everyone. Let's remember that the world is full of all kinds of people-- some being more sensitive and tender-hearted than others. Let's remember that illness can sap the physical and emotional strength of even the toughest person and make them more vulnerable to harsh words. I begin with myself in this endeavor--watching my words more carefully, and reminding myself to be kinder and gentler. I do not ever want to lose another member to this or cause them to lose us. I do not ever want to be the cause of another person's suffering.

    Even though I am still keeping in touch with this person via PMs and email, it feels like a death to me. It's like losing Jack all over again and my heart is very heavy today.

    Thank you for listening.

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    Well stated Sangye...just remember also from 'our' side of the fence, that things appear a bit different. I hate 'chasing' away people who need/want help, but some people in this world don't mind or are not mindful of how they affect others...stupid, ignorant, or blatantly uncaring, it doesn't matter, they are out there...hang in there...don't let your emotions be swayed by this blog...it's for us to disseminate the good from the bad, the useful from the useless...you are a caring, worldly person who has a world view larger than most others out there, remember, most of us live in a bowl, not of our own making in our own heads...LOL...that was a cute image! Anyways, just saying...glad you vented, don't take it too seriously as you're the one affected by this all, not the one who offends...seems like it should be the other way around...oh well, it isn't, you're sick, I'm sick, we're all sick, we just have to keep on keepin on...sighs...but, somedays...have a good one Sangye...hang tough!!

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    Terrible news, Sangye, just terrible. Please inform your friend that there are many of us here who join you in feeling your disgust and that we strongly encourage him/her to - - at the very least - - continue reading the forum even if too gunshy to write anymore. Because, as some of us know, the information contained herein could actually be a life saver.

    Thank you for posting this reminder and for continuing to show your support to our Weggie brother/sister. Ron

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    Very sad, my heart is heavy. Please convey the light and energy that I am sending through you to them Sangye

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    Sangye, please ask your friend to read this thread and do please try and encourage them to continue posting their comments.

    On the point of the flu shot, I found this site to be very very helpful when trying to make up my mind wether or not to have the flu shot. I read all that had been posted and decided for me it would be an acceptable risk to have the shot (remember I am a taxi driver, therefore am working in extremly close proximity to memebers of the public and in a closed environment to boot). That decision was not taken lightly and I appreciated the negative comments, at least I was making an informed choice.

    Surely one of the reasons for The Forum is to inform one another of the good AND the bad points of virtualy everything we do or plan to do. We desperately need everyone to feel comfortable posting their comments so that we all can learn and benefit from one anothers experiances. I feel unhappy now, just this week I gave my doctor a list of support groups for weggies and said this site was the most friendly and supportive ........................... I hope I was not wrong in saying that.
    Last edited by Dryhill; 11-28-2011 at 01:09 PM.
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Thanks everyone. The member still reads posts and your words will mean a lot, I'm sure.

    Dryhill, I still believe this forum is the friendliest and most supportive. I think we all just need the occasional reminder that words are powerful.

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    Hey Sangye, thanks for posting this. As you are well aware I feel the same about the flu shot - particularly the H1N1 shot which when first administered to the Canadian, Sweedish and a few other Northern European countries was 'laced' with squalene. I am certain - CERTAIN - that that was my environmental trigger. I've posted this on here before and have felt pretty much the same as your friend, unluckily for you all I have very thick Bulgarian skin and although I felt a little miffed, I kept posting. I haven't been on here for a while (just came back from the city getting an MRI on my brainless head and watching my little girl do her first on stage performance in a play - I digress, as always). I am now in the possession of a paper from the British Medical Journal that actually makes that very connection between the shot and various AI diseases. They don't mention WG in particular but Bells Palsy which for a number of Weggies is an early symptom. I just tried to insert the file, but am not having any luck (Andrew told me I could insert a PDF but I haven't had any luck so far). If any of you would like to see it let me know and I'll send it to you via email. Let your friend know as well, and I can send it their way if they like. I got symptoms within two days of getting the shot last year and within less than two weeks I was in hospital with a full blown flare that I'm still trying to get under control ( this was last October, 2010 that is.) And my first symptoms came only two months after getting the initial H1N1 flu shot.

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    I would love to see the study, Marta. You can PM me with it or email it to me. Thank you!

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    I'm very sorry that a member or our Weggie family felt that they had to remove their post. I rely on this group a lot, and would never want to feel like I couldn't share my true feelings here.
    Nicole

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    I too would love to read that article. Marta--thanks!

    About this thread...well, it bothers me. I either missed the situation or was oblivious to it, which, in itself, is a concern. Beyond that, it is true that words can have an effect that is unknowable, or at least unknown....You know, it's kind of funny (not hah-hah funny, however) that some memories can still lacerate the heart decades later. Okay, a very personal story: In my salad days (high school), I was a bit of a romantic soul (still am, I suppose, though in a far more curmudgeonly way!). I wrote an impassioned love letter to my girlfriend at the time. What did I know from anything, including common sense? As she dumped me, she referred to the letter as "a masterpiece of hate." Moi? I had to read up on that emotion, because, though I had heard of it, I had never actually experienced it, except, perhaps, when I was 11 and I shoved a kid named Lee through the fence for bullying third graders for lunch money. Anyway, I neither dated or wrote letters for nearly two years.

    It is hard enough to get your real meaning across in a face-to-face situation; in print (or on the internet), it can be painfully impossible. But I do not see any alternative than to soldier on, hoping for a kind of kinship of the mind, while knowing that sometimes we will fail, in perhaps a spectacular and ugly way. I, too, believe this forum to be among the friendliest and most supportive anywhere. We may occasionally get goofy, tangential, and too playfully flippant, and many of us do have strong opinions (which is, I think, to be expected for people with a sometimes fatal disease), but I think we are mostly pretty well behaved about being judgmental in any way. I truly do hope your correspondent, Sangye, can feel comfortable in joining us once again.

    Al

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