United Brachial Plexus Network, Inc.

i have had a BPI since may, 2010. when i first found this forum, i THOUGHT it was for information and support. i have asked several questions about different things. a lot of them went unanswered. an i dont knowis better than being ignored. i was told by several people to let everyone know how my surgeries went. i had my surgeries a month ago. i posted what happened with them. i got a response from one person. there were about 65 views. it is very hurtful to be ignored on here. i have very little support or help at home. i live alone. my family wont help. they dont want to hear about. i guess no one on here does either. sorry i bothered you people.

Hi Jmar,

I am sorry you feel so alone at home and especially here in the bpi community. I believe that sharing the information about your surgeries and also all the support you have offered out to others here has made a difference in many lives. Many view (as you can see by your 65 views) and don't respond. We have thousands of registered users on ubpn, and most never post. They view, search and obtain what they need from the site. I agree, as a community we should be more supportive of each other as we are on this journey. I hope you continue to post, view and be a part of ubpn. I know as a mother of a child with a bpi, your posts have been encouraging to me...even if I only viewed them.

If there is anything I can help you with, please let me know.

Thanks,
Anise

i just feel like since i am not a part of the elite few, i dont count.

I'm sorry you haven't gotten the support you were hoping for here. Perhaps you can post on the Traumatic BPI forum where the folks who typically go there can understand your surgical issues, etc. This forum tends to address BPI and the families are more familiar with children's surgeries to comment. I wish you the best. There are many kind and helpful people who visit this website.

i thought this was the general board. on ALL of the boards people understand the surgical aspects of BPI. whether it is birth related or not. i have not seen you on here before. the OBPI is where the families with children usually post. and, yes, i have posted on the TBPI and OBPI board many times with the same results.

JOYCE,aka Jmar
You are never alone. No matter TBPI or OBPI, we are in this Family together. I personally have found people are more often on Facebook than here now days. I cannot wait to join you at Camp 2012!
Carolyn J
LOBPI/73

mammaoftwo. i sent you a PM.

i too read everything.... i just dont know what to say sometimes. i reply to what i know and i try to avoid being irrelevent... im sorry...

I'm surprised you did not get more support from the TBPI board. They are so good about sharing their journey and medical care. On the adult/obpi most of us are not familiar with all the surgery and probably could only read.

I am an adult/obpi and have had no surgery and really could not offer much. I've been around UBPN for over 11 years and have responded to probably thousands of posts and emails looking for support. I agree with Carolyn that most are on FB now and seem to be missing from the boards. I find the General Board is mainly used by parents of injured children and perhaps they have many other issues.

Try the Tbpi/adult board again ans ask them to respond.

Kath robpi

i dont understand that. if i see a person who has just had a baby and is looking for support or answers, i respond by saying something about i dont know anything about the issues with an infant with a BPI, but i do understand the pain and agony of this injury. i also tell the person the best thing you can do for the child is to take care of YOURSELF. because i dont know what the person is going through, i can still offer encouraging replies. and as far as FB there is rarely any post on there. one every couple of months. unless it is hidden from view.