Creating an environment that is safe for all

[Lightwarrior]

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 yumanerd@gmail.com

[Dryhill]

Marta, I would also love to see the study PM or email me on jimsrainbow@hotmail.com . Thanks.

Jim

[annekat]

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]

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@]

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!

[me2]

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.