Its been a while since we came over to the new format. Choosing it and trying to make it as usable as we could while making it mobile friendly (over half of you are using mobile devices) was a challenge. But the biggest question your team had was whether or not combining our facial Pain communities (GPN &TN) while expanding to add other facial neuralgias and welcoming dental discussions (once frowned upon) as well as encouraging discussion of other treatment modalities was the right thing to do. Through some very heated discussions we also decided that political discussion (ie psychology, pain med legislation) didn’t belong on a peer to peer support network. There were other sites better suited to that type of discussion. Sadly some long term members didn’t agree with that and either moved on or limited their involvement. That was tough for everyone.
BUT whether or not you, who are here everyday, have noticed the shift - there has been one indeed. No longer is it a countdown about WHEN someone is going to get their MVD (seemingly at one time the only answer) and then a discussion about when the next one and the next one was going to occur and the feelings of hoplessness when things don’t go as planned or one finds they are not a surgical candidate. (most aren’t)
Instead what us outsiders see is members helping members cope with living with facial pain on a day to day basis. There is more sharing and support than ever before. There may not be the “technical advice” and “numbers” there once was, what there is, is a clear understanding that everyone is more than a set of symptoms that fit into a conceived notion. Everyone is an important INDIVIDUAL with their own hopes and fears. THAT is support.
All of this is a good thing. And all of you who have toughed out the “change” are to be commended. When we discussed this community in our latest “meeting” everyone agreed that the one thing that is finally occurring here is that this site is now one that literally SCREAMS HOPE.
Congratulations to all and THANK YOU for making this the wonderful place it is.
TJ and all you Moderators
THANK YOU
Without you I would be lost.Now ,I am still lost-but there are other people in this mess ,too.And they answer back when I am scared.
I have no idea how the site was before-I may have tried to log on but got nowhere.
All I can say is I was so thankful when I found this site.Hope was felt in my heart.
Thank you
As a former moderator who was pretty much run out of this place by the folks who took over moderation of the site, I have a few personal reservations on how well the new format works. This place once had over 600 active members in a total membership served of over 7,000 people. I still get traffic summaries on the odd occasion, and try to contribute where 20 years of experience with facial pain patients appears to be potentially useful.
Not sure what numbers you are getting but in the last 30 days this site has had 167,000 unique page views not including crawlers and search engines. Logged in members visited 11,200 pages in the last 30 days as opposed to 86,000 since the site went live.
Current membership is 8,900+ Active members at present (unique registered member logins) is 971 month to date. (of those 272 were on mobile devices) Of those 971 active members, 469 have posted in the last 30 days. In the last six months 99.7% of all new threads recieved replies (opposed to 18% the previous 5 years)
Not only is activity up significantly, participation is almost 4 times greater.
TJ
I’m sorry we don’t hear from you as often as we once did. I’m even more sorry that you decided to shelve your years of experience because of your disagreement of the adoption of DSM-5 Diagnoses to fit with ICD-9-CM and ICD-10-CM Codes. None of us like change. As you recall you quit after one post suggesting that discussion was not helpful to our members rather than engaging in a discussion of it. You also took exception to the Network wide policy “Because we are a peer-to-peer support network, we ask that members not include honorifics, degrees or professional designations such as RN, Imam, PhD. Adv, MSW, Sr, Dr., Dame, Sgt, Rev, DO or similar in their screen name. We will not approve these after Sept 2015.” I worked hard on my degrees too.
Incidentally the “traffic reports” are system generated activity logs based on 5 or so topics with the most interest (page views) and are sent only to members who haven’t logged in in the preceding seven days. I’m still working on the metrics of that email.
As a newbie I have no idea what the was like before, what I do know is that I have already found out loads of stuff that is going to help me manage TN. I am so glad I found you!
And Kaz, we’re glad that you’ve found us too. There is a lot of information here for you, and even better, a lot of people with first hand experience with what you’re coping with.
Join in the conversations and make yourself at home!
I for one certainly appreciated your personal contribution. You made me feel that I could always ask you for advice on how to go forward with my discomfit. Your responses to me were always welcome. Thank you for being there for us long term TN patients.
Why in the world would this site now use the DSM5 code??? I find that so insulting!! On so many levels!! I personally haven’t been able to understand all the changes made to this site. I personally felt comfort that we hadRed1 fighting for us on this issue. Red1 could you please explain to me what has happened here?
We don’t use any diagnostic code let alone prescribe to any system.That’s something not up to us, nor are we involved in medical billing where it’s primarily used. I realize there are sites that concern themselves with the politics of narcotics and mental illness. This isn’t one of them. Our members for the most part are struggling with day to day living.
FWIW this is an international site. For those international members, the differention of somatic pain chronic pain etc was long ago solved very much along the standards now in place across the US. Narcotics are also non issue as the US uses 95% of the world’s supply. We have gone 18 mos without the politics, we’ll go much longer. As Red said in one of his last posts, there are sites who relish that stuff (although there are many who quickly boot members who get into it - this is one of them)
I don’t even understand what a site that is suppose to help people living with facial pain has to do with medical codes or why any of it would be insulting. I guess this is what happens when it moves from truly trying to help others to self gratification or trying to play the leader or super star. At the end of the day, this is about sharing information to help a large number of people trying to survive with a horrible condition which affects many people differently. I don’t know how it used to be but as long as it’s that (which is what I see it as) then it is serving its welcoming purpose. Please carry on.
Hi
The only thing I have found that has ever bothered me on this site was when I wanted to respond to someone once,the automatic reminder came on and asked if I was sure I wanted to respond as 25% of the comments were from me.(This was not the message that comes on to remind you to hit the highlighted reply button)
I felt little a little kid.And I did not send the reply in support of someone.
And I cried a bit.
I am just so sick that any kind of little thing,that I interpret as a slap on the wrist ,just does me in.
My problem-not the sites.
Small thing for the amount of help I get from here.
Go ahead and reply. That message is to slow a few folks who dominate a discussion thinking they are the only ones involved and own it. CERTAINLY NOT you
Ellen, I know exactly what you mean. It happened to me once and I wanted to yell at it “I KNOW DAMMIT, I’M JUST DOING MY JOB, NOW JUST BEGGAR OFF!” (Or something to the same effect.) It doesn’t pop up too often, fortunately!