Alice thanks for sharing
November 13, 2011 at 10:55 pm
I tried to reply but it looks like the Northern Guitar Guy thread was closed.
Either way there is a message here NGG did a lot of good things for this site. In US alone we are looking at at least 300 new members each month we need to be here to support them. By that I mean we need to be fact based, positive and offer these people who are in the “Dark Days” something of value. In most cases all of us recover to some degree and have the opportunity to lead “quality lives”. I am not implying everyone recovers fully, or no residuals. But if you look at our collective posts we have to ask that question. What value are we offering to the new people to this forum. Why do the need to come here vs facebook or some other forum? it’s not to here us squable with one another.
I am not telling everyone to drink the “everyone recovers 100%” Kool aid but there is message here for everyone. All of us have a responsibility to make sure this is the place people come for support and information.
AnonymousNovember 14, 2011 at 8:06 am
[COLOR=”Teal”][SIZE=”4″]Good morning Kevin.
Thank you for posting Guitar Mans letter. He was fighting the same ones who are still posting. (guitar man you are not a PUNK. You walk in the same foot prints we all walk in. I came here for help and all of you were there for me through good and bad. Another one banned (Dawn) was a blessing in her help of children and adults.
Yes we need to be given support not told we are wrong and told their way is the only way. We are a family with a horriable disease and we need support not corrected or posting with fear. As I have said look around. This site is a dead site. There is a saying (ONE bad apple will ruin the barrel.)Banning someone never solves a problem.I have asked questions that are ignored. (WHY) I come every day looking to see if I can help someone. The problem is there are no posts. It is sad. All I can do is pray to the great spirit for guidance and to bless all suffering and the ones who need to post with love not to control. Bless you Guitar man and Dawn and all the others banned.
In friendship (Lakoda)[/SIZE][/COLOR]
AnonymousNovember 14, 2011 at 8:49 am
I am not sure it was right to post a letter from NGG ….I just simply dont know the answer to that and I know he said people PM’d him saying things about his condition but he did the same to others here . In his post to myself before he was banned he stated something to this nature ” Beachcomber has never had GBS or CIDP so her opinion is not worth what is in a cat litter box” . It was not those exact words but something very close to it . So tell me if that makes him a self called “punk” ? I don’t know but it was very cruel …. especially since I was just in the hospital getting treatments and then developed a blood clot in my leg which proceeded to go to my lungs . I have no anger however you can tell me how that would have made you feel ??
I am sure he has regrets … but some old fashioned apologies would have been nice instead of him being proud of what he had done to get him banned .
My best wishes NGG ….and I would have never of said you were lying about your symptoms and didnt have GBS or CIDP . Hopefully you learn to speak before you say something insulting all in the name of being a “punk” as you call it .
AnonymousNovember 14, 2011 at 10:48 am
[SIZE=”4″][COLOR=”Teal”]Kimberly none of us are perfect. We all make mistakes as I well know. My beliefs are different than many. I am spirtual and follow the Siouxs beliefs. Today is now, tomorrow is a dream and yesterday is gone and never the same.
Many say they forgive but cannot forget. Our belief is if you forgive-forgive totally.If you still continue to remember then you are keeping the pain alive and happyness will never come.I was taught speak your mind then shut up.Every time I reply to anger all I am doing is feeding that anger and keeping it alive.
Yes there are several I have jumped on.Some are too blind to see they hurt others and will never change so I smile and walk away. I am guilty and I and only I can change this.Guitar man has made amends and this is what the great spirit wants us to do.This form was not created by accident. It as I see it was brought to us by the father. For us to have a place to share with pain and love.We should be allowed to share our pain many,many, of us have gone through to get proper help.It upsets me to read the pain some of us had to go through to find help. At one time we had members here who guided the hurting and lost to find help. They did it with loveing careing words.not with names of books or address’s after address’s. I didn’t need web address’s as all I did was put in GBS/CIDP and found thousands id places with info.
Kimberly if you post something and I don’t agree I am NOT going to say you were wrong or try to make myself look like I am the only one who knows what is going on. This is the reason Guitar man stood up and I stand up and others. The ones who enjoy cutting others down on posting need to be aware they are not really helping the person but thinking of themselves and not the person in need.
We have said what we felt so why don’t we now try to get BACK a support group like we had. It takes everyone from the ones running this web site to us the ones with GBS/CIDP. We need to bring back the strength that has been lost and this power hunger needs to stop. We need to remember what we got when we 1st arrived here. Let the ones who will never learn cont to show what they are. We can go forward helping the needy our brothers and sisters. Remember the fastest way to remove a pest is called (SILENCE) With spirtual love (Lakoda)[/COLOR][/SIZE]
AnonymousNovember 14, 2011 at 12:09 pm
An old Cherokee is teaching his grandson about life.
“A fight is going on inside me,” he said to the boy. “It is a terrible fight and it is between two wolves:
One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.
The other is good – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.
This same fight is going on inside you – and inside every other person, too.”
The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?“
The old Cherokee simply replied, “The one you feed.“
Galatians 5:22,23: But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law.
Here’s hoping that all in this forum will try to feed the good wolf … 😉
AnonymousNovember 14, 2011 at 1:52 pm
WOW! I haven`t been on this forum for a few months and all kinds of doo-doo has hit the fan.
After spending a couple of hours reading it has become apparent that this little closed society had completely abandoned the right to speak freely, won`t allow its members to choose what they want to read or believe, and will send you for a `time out` if you don’t say what they like. When rights are denied society fails. So sad. Guess if you are going to play in their house you play by their rules.
Too bad, it made for some interesting reading, might have even helped some people or made them aware of some other point of view.
It looks like the sandbox is going to be cleared out and nobody is going to be able to play.
AnonymousNovember 14, 2011 at 3:50 pm
[QUOTE=wrtrmom] It looks like the sandbox is going to be cleared out and nobody is going to be able to play.[/QUOTE]
I’m building a huge castle in my corner of the sandbox! Plenty of room for everyone! 😀 Yeah, that’s my weak attempt at levity, however, we could use just a bit around here and remember the focus of the forum is to help each other.
AnonymousNovember 14, 2011 at 4:09 pm
When, we first come to this site, we are pretty much all equal. We are scared, looking for information, looking for support, looking for that success story and hoping that we will be successful and be able to return to a normal life. Then, we separate and find the people who we want to associate with, people with the same attitudes and people who feel that we will get better.
I feel that a major portion of the problem is with the site itself. There is a difference between CIDP and GBS, they start the same then go in two different directions. The forum puts us all together. There is a third group that also separates us and that group is the people who have not been diagnosed and are looking for answers, have common aliment and common fears.
I came looking for information. I came looking for success stories and after awhile I came to give support. Northern Guitar Guy was the first person that I reached out for when he first appeared at this site. He was terrified, concerned for the future of his young family, he was the first of many that I phoned to just talk to and share my story. I know that he did the same and he made many good friends on this site and I hope he counts me as one. My hope is that we all get a little better every day or that we come to accept that a new normal is our lot is life until another new normal appears. I will continue with my baby steps and come back and visit here from time to time.
I am posting this on several threads and apologize if you see it more then once.
AnonymousNovember 15, 2011 at 11:03 am
Well said Harry! That is an interesting point about GBS and CIDP being intermixed on this forum. Maybe it would be a good idea to have 2 separate forums, especially since there was so much debate about the sct, which is not relevant to GBS. It is educational, but you are right about the differences. Great food for thought….
I too came here looking for help when I was scared and anxious. There have been some wonderful people who have helped me. It is a different place now and it makes me a bit sad. I hope that people can move past these divisive issues and name calling, and remember the purpose of the forum, which is to help people and to connect with others that can understand.
AnonymousNovember 15, 2011 at 7:14 pm
When I first joined the GBS/CIDP foundation discussion boards, I spent several months on the CIP-CIDP forum only. I had so many questions and I went straight to where I believed would be the people that faced the same challenges I do. It was quite awhile before I ventured into any other forums.
This foundation does much more than just the forums that benefit both conditions. And they’ve provided us with various forums depending on various factors. Most of the SCT discussion takes place on the CIP/CIDP forum, the Main Forum, and when things go right, the Success Stories Forum (it’ s always fun to read everyone’s success story, regardless of if it is GBS or CIDP!!!!).
I think the various forums are set up quite well. The issues/challenges faced are different if you are a child or an adult or a parent or a caregiver … and for the specifics to CIDP, I go that forum. Before this is taken wrong, I have no problem with people posting to any and all of the forums. I’m just saying, for me, if I have a question about my condition, I do go to that forum.
My thoughts …
AnonymousNovember 15, 2011 at 8:40 pm
[FONT=”Microsoft Sans Serif”]I here you.
And I agree.
Also, I don’t know the percentage of folks who get GBS that eventually become CIDP– maybe someone knows? — But, I know there are some and that, in conjunction with the medical profession considering the two conditions as practically the same, depending upon length of time time– to me it seems fitting we are all in the same place.
There is at least a lot of overlap and hopefully we all can offer stuff that is helpful.[/FONT]
AnonymousNovember 16, 2011 at 11:02 am
Linda and Alice,
You are right, there are separate Forums. I guess I have never utilized this forum that way. I always go to Today’s posts and they are all intermingled there. I agree that some people are initially diagnosed with GBS and it later turns out to be CIDP, so there is usefulness in the overlap. I just hope that people can be more respectful going forward and get along. Then we wouldn’t have to have these conversations in the first place!
AnonymousNovember 16, 2011 at 7:47 pm
When I first log on, I go to New Posts and am sometimes drawn into a thread that may not be GBS related. Esp. if the discussion touches my experience. If there isn’t anything I continue to GBS Adult, though I may visit Jim C’s funny pictures, my 10 year old daugher loves those!
You must be logged in to reply to this topic.