I believe as we all come together and support each other we all need to remember that as we share our personal stories in discussion that some of us need to be respectful to each other. What may seem remiss to one is actually something personal to another. Some are having a horrific day with their disease and some things which we share are difficult but need to be said. So lets not forget others today or any other day as we all try to come together and support one another. god bless you!
My Best
joanne
I've been yelled at on here - by people who were out of their mind with pain a couple of times -- and some have gently nudged me to tone down my passions --
I've even seen a post from a moderator go off the deep end once upon a time - it happens - we all have triggers - and they are not necessarily having to do directly with TN pain -
then you pile on the TN pain - and we need to remember how lucky we are to have each other. I've been on the TNA boards - and they are nice - but nothing can take the place of these wonderful angels on here - I can't stay away even with no pain! You guys are my peeps!
Hi KC, i think that if its not brought to the surface and what one person may think is funny may not be so funny to another. We are all guilty of this, myself included. Thats why when a discussion is opened we just need to take a step back, pause then answer. This is such a great forum for us to express ourselves. Alot of us not having such a great time with our disease. Some in more pain than others. Some sharing more personal things than others. The last thing you want to do is scare someone away. Thats why I wrote my discussion on respecting one another. Just take that extra second, people on the most part are empathetic to other people that are hurting. I think being a nurse puts me into a different space, especially when folks are suffering, thats inbreed in me and will not apologize for this quality. Especially people in pain, I never question their pain. Who am I , cannot get inside their bodies. You job is to help and be supportive with respect. Well I said my peace. Time to move on. Thanks KC
My best to you
Joanne
I also feel it is so important not to scare people away. The effects of TN pain on a person are deep and far reaching. There are often no words to describe what we go through. But i know it makes you strong sometimes and weak sometimes. For some reason people find it much easier to be BRAVE with their words online. And when one person says something it is easy for others to "jump on the band wagon". I think it's a good idea to ask yourself "Would I say this if I were talking with this person face to face?"," would I want to be treated this way?" Also remember all we are seeing are words, we can't hear tone or inflection or frustration or desperation. Although some are very adept at using "ALL CAPS" to emphasize tone. Shouldn't we always assume the best and respond accordingly?
I also look at it from a slightly different paradigm. I found my answer here on this site. I have been TN pain free since Nov. Kathy, the person who posted my answer, I believe was scared away by the way she was treated. I was angry at first, I guess sometimes I am still angry about it. What if I had never found her post. It had been deleted and I happened upon it attached to the bottom of one of the replies to her. I was never able to talk with her, to find out how it was working for her in the long run. In this part of my journey I am alone.
shawna
I agree that words can be lost in translation thats why I dislike texting too. We all are going thru alot on this website and sharing our experiences can enlighten another. I do always try to pause when reading or making a statement. I just do not want to hurt the other person with my words. Once said you cannot take it back, but can always apologize thats what makes us human. Sharing our symptoms no matter how trivial ,it may be not be for another. We all need to keep an open mind. What we are feeling may help another person.
Thanks Shawna all my best!
Joanne
Hi Shawna
You sent me some info back in early March, I think. I am still very interested in anything that will relieve the pain. I plan to follow up as soon as I get some funds together. All the stories and treatments we bring to the discussions are valid. I also think that in many cases it takes more than one kind of therapy to get relief. We need to look at anything.
Just didn’t want you to be so alone in your success and I hope it continues.
peace and kindness
Bellalarke br/>
Shawnamohana said:
I also feel it is so important not to scare people away. The effects of TN pain on a person are deep and far reaching. There are often no words to describe what we go through. But i know it makes you strong sometimes and weak sometimes. For some reason people find it much easier to be BRAVE with their words online. And when one person says something it is easy for others to “jump on the band wagon”. I think it’s a good idea to ask yourself “Would I say this if I were talking with this person face to face?”," would I want to be treated this way?" Also remember all we are seeing are words, we can’t hear tone or inflection or frustration or desperation. Although some are very adept at using “ALL CAPS” to emphasize tone. Shouldn’t we always assume the best and respond accordingly?
I also look at it from a slightly different paradigm. I found my answer here on this site. I have been TN pain free since Nov. Kathy, the person who posted my answer, I believe was scared away by the way she was treated. I was angry at first, I guess sometimes I am still angry about it. What if I had never found her post. It had been deleted and I happened upon it attached to the bottom of one of the replies to her. I was never able to talk with her, to find out how it was working for her in the long run. In this part of my journey I am alone.
shawna