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Sangye
11-28-2011, 02:50 AM
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.

Dirty Don
11-28-2011, 04:12 AM
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!!

Thakator
11-28-2011, 04:20 AM
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

Lightwarrior
11-28-2011, 07:13 AM
Very sad, my heart is heavy. Please convey the light and energy that I am sending through you to them Sangye

Dryhill
11-28-2011, 01:07 PM
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. :sad:

Sangye
11-28-2011, 01:41 PM
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.

marta
11-28-2011, 02:34 PM
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.

Sangye
11-28-2011, 02:46 PM
I would love to see the study, Marta. You can PM me with it or email it to me. Thank you!

NicShaf
11-28-2011, 03:13 PM
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.

Al
11-28-2011, 03:27 PM
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

Lightwarrior
11-28-2011, 03:35 PM
Marta, I would love to see the study, my first symptoms came two weeks after the flu shot in 2009 and I was diagnosed a few weeks later. PM or email me. My email is [email protected]

Dryhill
11-28-2011, 09:00 PM
Marta, I would also love to see the study PM or email me on [email protected] . Thanks.

Jim

annekat
11-29-2011, 03:01 AM
Thank you for that heartfelt and eye-opening post, Sangye. As someone who has recently started posting, it is very interesting. Like Al, I somehow missed or didn't tune in to that thread.... probably too involved in my own increased activity on the forum. I have really had nothing but warm and positive feelings about this forum, even with the occasional disagreements or negative comments. That is what a forum is about, people are free to say what they want and express their personal points of view. But having Wegs can be a very emotional experience, more so than many of us may perceive on the surface. It is understandable that one could get one's feelings hurt sometimes, and we all need to be careful how we state our views. I really hope that the person you are talking about will join in discussions again, when he or she feels ready, and I, for one, don't necessarily need to know who it is. I hope that when the person realizes what a loss this is to you and to the forum, and to themselves, as you say, they will come back around. Keep up your good work of being the conscience of this forum. Not that no one else is, it's just that you are the one who really stands out, to me.

Anne

Chris G
11-29-2011, 06:08 AM
I think I too missed that thread completely. I hope your friend realizes that he/she will be missed, and will come back.

It's amazing to me that flu shots are such a loaded topic around here!! It's a personal decision for each of us, and we come here to gather information on how to best make that decision for ourselves. All input is helpful. If some of you feel certain that your flares were triggered by flu shots, then that's certainly important information to share. When I finally made my decision to get one, it was with your voices in my head, and my fingers crossed.

We need as many opinions as possible, in order to make informed decisions. It's just one of the many ways we help eachother. Please come back friend.

chrisTIn@
12-03-2011, 12:13 AM
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

Welll said, Al!
I also hope that the person that we 're talking about here will soon join the forum again.
Although it's good to know that he/she is reading here anyway, I hope he or she will also feel the freedom to write again! :wink1:

me2
12-06-2011, 06:21 PM
Well, I've blabbed elsewhere about poor me not having access this site now I read about someone not feeling comfortable coming here anymore. I don't know what transpired but I am very familiar with internet communications gone wrong - and how painful it can be. I'm sorry it happened here. I too hope the person feels comfortable enough to return some day.

I missed the vaccination topic but allow me to add my two cents. I have avoided vaccinations after reaching adulthood (which technically happened about thirty years ago). About six years ago I was feeling good enough to travel to China. My doc suggested I get a Hep A vaccine. I was reticent about the idea but I thought the benefit outweighed the risk.

The nurse gave me the shot and I had a strong reaction to it. She brought the doctor back in and he said something about how needles can make people queasy. In retrospect I wish I had yelled at him. Prior to that Hep A injection I had been 'needled' literally hundreds of times. I'd had blood drawn , been injected with Cytoxan, Enbrel, Iodine dyes, Solumedrol ETC... and NEVER did I have a reaction like this one and he talks to me about 'needles'?

Two weeks later I'm in Western China and collapse near the Li River. I can't walk and I feel a horrible sensation in my head. To make a long story short I now have damage to my cerebellum (you can tell its true because I can spell it). I believe something in the vaccine triggered this. I don't have proof, I'm not SURE, but I have a very strong hunch. When others tell me their stories I listen.

My original doc (also a scientist at the University I go to) taught me to think about these things this way: He told me that science and medicine was very good at figuring out causes for things in large groups but had an extremely difficult time with things that are in small groups.

What he meant was something like this: It could be that vaccines cause WG or WG relapses in say 5% of people. This is VERY hard to set up a study for and too small of a number to be likely to attract a study and yet STILL it could be a fact.
We know WG is complicated. It requires an unusual degree of self reliance and intuition. Our wonderful (not being sarcastic)
medical system does not deal well with this. For very good reasons they want numbers, studies, bloodwork - gold standards for treatment. WG is reluctant to co-operate.

Sorry to digress. You can see I'm catching up a little on my writing this evening while I have access. Thanks for listening.

marta
11-07-2014, 11:04 AM
My original doc (also a scientist at the University I go to) taught me to think about these things this way: He told me that science and medicine was very good at figuring out causes for things in large groups but had an extremely difficult time with things that are in small groups.


I was looking for a post to send to my doc and stumbled on this post and got sucked in. The wisdom of Al and Christie is so nice to read. It's almost like they're still here with us.

The quote above really struck me though because that's what's been holding us back, and that's the misconception outside that we are rare, and the big excuse many docs and medical practitioners use to not give us the care we deserve. We are told we are rare, MS patients are told they are rare, Lupus patients are told they're rare, but Autoimmune Disease as a whole is anything but rare. I'm sure if they looked for onset of Autoimmune Disease (rather than splitting it up into each manifestation of autoimmune disease - WG, MS, RA, etc., etc., etc.) after vaccines, there would be a whole different story. Although VAsculitis is one of the documented, possible, extreme and rare negative side effects of the h1N1 vaccine. I think we need to get out of the mechanism that has evolved that keeps us segregated and perpetuates ignorance in our society (layman and medical) when it comes to AI disease.

I think it's acceptable to be a medical professional and not be knowledgable about Wegener's but it's certainly not OK to not be knowledgeable of Autoimmune Disease.... and sadly this is the case more often than not.

mrtmeo
11-07-2014, 11:23 AM
Sangye,
I sure hope your friend comes back.
Everyone is entitled to their opinion, but not to attack others.
This is an open forum and a rare one.
Where else can we go with this disease?
We have to all stick together.

vdub
11-08-2014, 03:39 PM
Just to let everyone know, that thread was 3 years old..... Still relevant, but old...

me2
11-08-2014, 03:42 PM
Thank you Vdub for your summation of me- still relevant , but old. hahaha Carry on...

vdub
11-08-2014, 04:12 PM
HA! Me, too, but less relevant I think....