I hope i dont sound needy but I could benefit from this. I mentioned a get together in an earlier post. Let us see if we can get something going. And soon!!! I will do everything in my power to help.
Frankie
I really need to meet someone else with this!!!!
Re: I really need to meet someone else with this!!!!
I can understand how you feel. It seems like since so many are OBPI you would think we would see more of us around. Before this I have never met someone who had ever HEARD of Erbs, let alone knew someone who had it. Even my Dr, I am his only patent he has ever had, and he hadn't heard of it...I am teaching him.
My DH, bless him, tries to understand...so does my Mom, but they really just don't know...they can't understand. Mom still will say it is just an arm. In fact she said that about 2 weeks ago. I told her to tie her arm to her side and try to get around for a week!, and hung up.
My DH, bless him, tries to understand...so does my Mom, but they really just don't know...they can't understand. Mom still will say it is just an arm. In fact she said that about 2 weeks ago. I told her to tie her arm to her side and try to get around for a week!, and hung up.
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: I really need to meet someone else with this!!!!
Kamren, I can feel what you are feeling when others say that sort of stuff, I still hear it most of the time. The way I see it, it is like when people say I know how you feel when one of their friends is going through something be it cancer, a divorce or what ever. The thing is how can you know what the other person is going through if you your self has not experienced it. People of my class in high school some times say they know what I feel when I am down about my arm, personally I would like to know just how it is that they know, when they are always picked first to play any sort of physical game, and because of my arn I am one of the last. I think that any one who says that they know what we are goinfg through should have to use their non dominant hand for every thing like I have to do. Then and only then will they have the slightest idea what it is like to be me.
I want to meet someone else who is like me to, even though I have all my bpi friends online I still feel so alone sometime. I have never seen any one else with Erb's Palsy. It would be so cool to actually sit face to face and talk with some one like me that has faced the same challenges that I do.
Sorry that was so long, the thoughts just kept coming.
Amy
hope16_05@hotmail.com
I want to meet someone else who is like me to, even though I have all my bpi friends online I still feel so alone sometime. I have never seen any one else with Erb's Palsy. It would be so cool to actually sit face to face and talk with some one like me that has faced the same challenges that I do.
Sorry that was so long, the thoughts just kept coming.
Amy
hope16_05@hotmail.com
Amy 28 years old ROBPI from MN
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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: I really need to meet someone else with this!!!!
I know just what you are feeling. And when I say it, you know its true. It took me 60 years to meet other obpi/adults and it was wonderful. It is nice to compare arms and to laugh at some of the things we all do. I hope you guys will consider camp in 2005. We had so much fun just making fun of our selves and check out each other's arms.
I met Judy T and Nancy B for the first time in Fla. about 4 years ago and we all felt just like you do. We just wanted to see someone who moved like us and really understood the day to day frustrations...
Camp UBPN 2003 - I met John P and Anthony -- Judy, Nancy and I went in a canoe... it is good to share our feelings about our arms with others who truly understand.
I thought we would never stop laughing it is good and it is very HEALING... In fact I never realized how much I needed to meet someone like me until I found ubpn. I guess I had given up hope of anyone understanding just what this arm means and how many challenges we face on a daily basis...
I hope we all get to meet at Camp 2005. We had a meeting room just for adult/bpi and it was great.
I wish I could meet you all sooner but thats the best I can offer.
Kath
I met Judy T and Nancy B for the first time in Fla. about 4 years ago and we all felt just like you do. We just wanted to see someone who moved like us and really understood the day to day frustrations...
Camp UBPN 2003 - I met John P and Anthony -- Judy, Nancy and I went in a canoe... it is good to share our feelings about our arms with others who truly understand.
I thought we would never stop laughing it is good and it is very HEALING... In fact I never realized how much I needed to meet someone like me until I found ubpn. I guess I had given up hope of anyone understanding just what this arm means and how many challenges we face on a daily basis...
I hope we all get to meet at Camp 2005. We had a meeting room just for adult/bpi and it was great.
I wish I could meet you all sooner but thats the best I can offer.
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: I really need to meet someone else with this!!!!
Hi Frankie,
I'm 50, live in PA and the bpi is on the left side. I met
another man with bpi while doing my job search through
career links. That's a state funded project for all
unemployed people who are seeking job's. It was good
to meet someone else who understands what it is like
living with this injury. Not long after meeting him I
began to notice that there are more people around with
bpi then I had ever noticed before. I think I have
spotted ten in Lancaster County PA and I don't doubt
that there are more. Some may not like to venture out.
I know it was though for me as a child to go outside.
Some of us are not as seriously injured as others and so the
injury dosen't show but those people are around you. I've
read conflicting statistics on the internet. Some statistics say
that as many as 3 million people in the USA have bpi, but I
think the number of people with bpi is MUCH higher because
- 1 the degree of injury is so varied and therefore not all
cased are discovered and 2 - because hospitals may not want
to admitt mistakes. I understand very well how you feel but
you are not alone. I'm getting pretty curious myself about the
UBPN camp. I've never been to it before. Maybe we'll meet
at the camp in the future or some other way. In the mean
time here's my e-mail address cdiamondstein@yahoo.com
and my yahoo group is ERBSBPP. If you want to access the
yahoo group you'll have to establish a free yahoo e-mail
address first and then click on "groups" Now in the search box
on the yahoo group page type in ERBSBPP. When you reach
my groups home page click on "join this group" and at the
bottom of the join page click submit. The message board is
worth a visit and there are some good links both on the
message board and on the links page. Feel free to post
messages and links there if you want to. Good Luck!
Cliff
I'm 50, live in PA and the bpi is on the left side. I met
another man with bpi while doing my job search through
career links. That's a state funded project for all
unemployed people who are seeking job's. It was good
to meet someone else who understands what it is like
living with this injury. Not long after meeting him I
began to notice that there are more people around with
bpi then I had ever noticed before. I think I have
spotted ten in Lancaster County PA and I don't doubt
that there are more. Some may not like to venture out.
I know it was though for me as a child to go outside.
Some of us are not as seriously injured as others and so the
injury dosen't show but those people are around you. I've
read conflicting statistics on the internet. Some statistics say
that as many as 3 million people in the USA have bpi, but I
think the number of people with bpi is MUCH higher because
- 1 the degree of injury is so varied and therefore not all
cased are discovered and 2 - because hospitals may not want
to admitt mistakes. I understand very well how you feel but
you are not alone. I'm getting pretty curious myself about the
UBPN camp. I've never been to it before. Maybe we'll meet
at the camp in the future or some other way. In the mean
time here's my e-mail address cdiamondstein@yahoo.com
and my yahoo group is ERBSBPP. If you want to access the
yahoo group you'll have to establish a free yahoo e-mail
address first and then click on "groups" Now in the search box
on the yahoo group page type in ERBSBPP. When you reach
my groups home page click on "join this group" and at the
bottom of the join page click submit. The message board is
worth a visit and there are some good links both on the
message board and on the links page. Feel free to post
messages and links there if you want to. Good Luck!
Cliff
-
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: I really need to meet someone else with this!!!!
Hello everyone,my name is Carolyn J and I'm in Washington state. I just found a name for what I/we have 2 yrs ago at age 63....I thought I was alone out here! My Erb's is on the left side.I am looking forward to meeting you all at the 2005 camp.By the way, why aren't the adults meeting at the 2004 camp?...just wondering....
It's nice to have a messahe forum. I'm open to questions....Carolyn J
It's nice to have a messahe forum. I'm open to questions....Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: I really need to meet someone else with this!!!!
Hi Carolyn,
UBPN has a camp every two years.
Our last one was this past Labor Day weekend in the Adirondacks.
It'll be great to meet you!
I'm 50, LOBPI.
Nancy Birk
UBPN President
UBPN has a camp every two years.
Our last one was this past Labor Day weekend in the Adirondacks.
It'll be great to meet you!
I'm 50, LOBPI.
Nancy Birk
UBPN President
-
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: I really need to meet someone else with this!!!!
Camp photos
http://ubpn.org/camp2003/campphotos.html
Check out the canoe with Nancy, Judy & me in the middle...
Kath
http://ubpn.org/camp2003/campphotos.html
Check out the canoe with Nancy, Judy & me in the middle...
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: I really need to meet someone else with this!!!!
Hello Carolyn. I live in Washington state also - in the Seattle area. I found UBPN about 3 years ago and finally met another OBPI at Camp last August. Camp was a special experience for me and I'm sure that it would be for you too.
John P.
64 and ROBPI
John P.
64 and ROBPI
-
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: I really need to meet someone else with this!!!!
Hello again. Thanks for the welcome and information,Nancy and Kath & the guy in Seattle(sorry,I blanked out on your name). I forgot to mention that I have LOBPI and I am in Tacoma.
I am really looking forward to Camp in 2005,now!
Carolyn
I am really looking forward to Camp in 2005,now!
Carolyn
Carolyn J
Adult LOBPI
Adult LOBPI