ubpn support???

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
jmar
Posts:528
Joined:Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc:brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
ubpn support???

Post by jmar » Sun Aug 07, 2011 12:14 pm

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.

mamaofsix
Posts:214
Joined:Sun May 11, 2008 5:20 pm
Injury Description, Date, extent, surgical intervention etc:Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.

Re: ubpn support???

Post by mamaofsix » Sun Aug 07, 2011 9:08 pm

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

jmar
Posts:528
Joined:Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc:brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: ubpn support???

Post by jmar » Sun Aug 07, 2011 10:15 pm

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

karenr
Posts:27
Joined:Sun Nov 04, 2001 8:23 am

Re: ubpn support???

Post by karenr » Sun Aug 07, 2011 10:26 pm

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.

jmar
Posts:528
Joined:Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc:brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: ubpn support???

Post by jmar » Sun Aug 07, 2011 11:08 pm

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.

Carolyn J
Posts:3424
Joined:Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc:LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location:Tacoma WA
Contact:

Re: ubpn support???

Post by Carolyn J » Mon Aug 08, 2011 1:21 pm

JOYCE,aka Jmar :D :mrgreen:
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

jmar
Posts:528
Joined:Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc:brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: ubpn support???

Post by jmar » Mon Aug 08, 2011 1:43 pm

mammaoftwo. i sent you a PM.

User avatar
karategirl1kyu
Posts:363
Joined:Mon Feb 19, 2007 12:59 am
Injury Description, Date, extent, surgical intervention etc:LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
Location:Richmond, RI
Contact:

Re: ubpn support???

Post by karategirl1kyu » Thu Aug 11, 2011 2:02 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...
~Mel/23/LOBPI

Kath
Posts:3242
Joined:Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc:I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location:New York

Re: ubpn support???

Post by Kath » Sun Aug 21, 2011 4:56 pm

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
Kath robpi/adult

Kathleen Mallozzi

jmar
Posts:528
Joined:Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc:brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: ubpn support???

Post by jmar » Sun Aug 21, 2011 11:31 pm

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.

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