United Brachial Plexus Network, Inc.

This is how I feel too. Ive posted maybe 3 times this year. The last one was on pain. I maybe got 2 post for it which i appriated. but when the post next to it get more and its about a football game or something. it seemed that we headed in the wrong direction. Im sad too. I do stop in every once and while. This week was hard beouse becouse our law firm did nothing for the past 4 years dropped our lawsuit in court so we will have to refile. I wondered if i should call the bar to complain but i made up my mind on my own. The support for me is gone.

Carolyn J,

I have read your posts. And I very much value them. I am also a scientist, and I have also seen that my messages don't get quality responses. I have proof that this site is dominated by small circles of people, one person makes a response then the friends follow. I also see that these small circles are very critical. Sometimes I wonder why don't they just pick up the phone instead of making their harsh statements on the UBPN...

Yes, the UBPN lost momentum during the shut-down, but they were also very rude toward people seeking inquiry as to the lose to service. With that I feel no real value of those people, but I do still value those few parents that make decent comments and suggestion...

Guest BPI Mom

I am sorry to hear that some of you personally think so badly of the volunteers that run UBPN, and I take personal offense. We all have jobs, families, and lifes outside of doing everything we can for UBPN. We only have so many people and so many people can only do so many things. Again this is 100% volunteer work, none of us are paid, we offer out time to help others and then get yelled at for not doing things right, how is this right?

It really frusterates me that the people who complain the most are those who do NOT step up and offer to volunteer and help out.

While the UBPN server was down, hense our website was not work, we did not receive emails of people offering to help, we had emails from people slamming us for "taking away their bords" and honestly I think its out of character for many people here. Dont you think it would make things easier if instead of complaining people would offer to help get things running again? Had we more volunteers, we could have been down for 2 or 3 days maybe, verses a month! BUt as you can see, from yourself as well as other, people dont l,ike to VOLUNTEER or do something for nothing. Its hard work, it takes many many hours, and then no one appreciates what it is that you do. Is there something that you could offer to help us with?

There are so many people here from so many places in life and for the most part things work quite well. However, as with anything else, there are always going to be problems. We, as adults need to be mature and handle the situations as they arrise. Not everyone seems to be able to do that and it is frusterating for EVERYONE.

If you have reason to believe that the volunteers, such as myself, arent doing anything, or you personally would like to volunteer some time, PLEASE email me directly. I will take it upon myself to organize this and get things going. So please, any of you who are interested in VOLUNTEERING your personal time... let me know. courtney@ubpn.org

I personally work full time and am in grad school full time and still find time to volunteer and help others, yet Im not valued? How aobut we sign in so that we know who we are talking to......

Courtney (very offended!)

I read the boards most days but admittedly I mainly post on the tbpi uk board. In fact, I post more here or on the obpi board these days, because the idle chit chat element of the tbpi board has gone and most of the questions are about surgeries etc that I can't comment much on as I didn't want any. So, son't worry too much about all the everyday stuff taking over from the bpi stuff, because I think that's what keeps the place alive. I get my uplift, help and support from reading the posts of the long term bpi people like Carolyn and Kath, and also from following the stories of kids I've admired from afar for as long as I've been coming here. You parents probably don't realise how many people such as myself and others do read your posts, and how much of a kick I personally get when I read of the landmarks in their lives. I don't always reply because I am not obpi. So, please keep posting whether anyone replies or not, I do think people will reply if they can and you'd be amazed how much people read. I think the long down time did lose some posters, but it will build up again.

And Court, you have no idea how mature and polite you appear here despite provocation, at your age I was much stroppier than you and would not have been suitable for the job you do. In fact, I'm not suitable now.....those hormones just get WORSE lolol. You are very much appreciated and as out tbpi 'rep' on the board of UBPN, in my opinion you couldn't be better!

Maybe those of us who've been around awhile are just sick and tired of the "funlow"s and the "Guest BPI Mom"s. It was better when snippy and rude guest posts were moderated and the garbage didn't end up on the boards.

Kate

Jenny, we apreciate you and your knowledge! You have helped me personally in so many ways... wait till I decided ot have babies, your FIRST on my list of people to chat with! haha

Kate, the boards are STILL moderated by the moderators. However, as we have explained before, one one can just sit 24/7 and moderate. Therefore, some posts are going to be seen before the moderators get to them. We are still in the process of working out some glitches with this new software too, everything takes time.

Just reading the boards, sometimes I wonder, shouldn't the moderators have deleted that? But they know what they are doing and we have to trust that.

I got an email from that "guest BPI mom' last night... a very nice one! She explained herself and I apprciated it. I did not feel that my response to her was "rude" but straight forward. Many poeple here come back with RUDE comments and I believe those are the ones that get deleted, or need to be.


THANKS TO ALL WHO PARTICPATE HERE! You are ALL appreciated!!!

COurtney

I too appreciate all that the volunteers do. I did ask a couple of times about when the board would be back up during the down time. I always received a polite answer. But, I am sure they were receiving a barage of these questions during this time. I think it is all worth it. I frequent the boards and have had a lot of support here. I to don't have many answers about pain and surgeries as Dustin is very lucky to have no pain. He is also only 1 year into this so we aren't as experienced as others. I do get upset at times by rude posts left by people who don't even have the courage to sign in. But, I think you will always have your share of these. I just try to accept that and continue with the meaningful posts. I do believe that the moderators do a wonderful job and things are handled as quickly as they are able. One last thing, My husband has a lot of computer knowledge, and yes I did offer his services while you were down. The offer was declined.
Sue

I am very gratefull for this site and all who run it. I have made many friends on this site (Amy, Kath, Carolyn!) and though we have never met in person I know that I can count on you all to help me get through tough times. I hope to one day meet you and everyone one else! I have only met one other person with BPI and she was so different from me. No drive/determination to do anything and now I see that there are others with OBPI and TBPI who are like me in that way!
Keep up the work, and post when you like.
Marieke

Courtney,

I was referring to before, when guest posts needed to be approved to be posted, vs now when all posts go up instantly. I wish the new software worked the same way as the old in that respect!

Kate

Courtney you are one of the most Giving persons I have met. I Appreciate everything you do. You will go far in your carreer. People listen intently when you talk. Thank You

AND, THANK YOU to all of the other Board of Directors who GIVE,GIVE,GIVE and are fantastic Moms and Dads(& thank to your understanding spouses too!). You all are Angels of our UBPN Family.

HUGS,
Carolyn J