United Brachial Plexus Network, Inc.

Just a quick note between breaks at work...I'm seeking some counseling help. I havent gotten an appoitment setup yet but will make sure to print out those articles and take them with me (which i wouldnt have thought to do actually).

hes highly recommended and i think it will do me good to hopefully work on the emotional pain - as that seems to be my core "thing" right now.

well back to work!

Caiti, I am glad that you are taking steps in the right direction! Thats great. Emotional stuff is a huge part of this injury and we need to work through it. I just recently went through another round of working through it. The people on these boards are amazing! It is great to talk to people that truly understand what you are going through. It is even better to meet up with the people who understand.
UBPN hold camp every two years when all of us can get together for a weekend of fun, its amazing! I have gotten to go to the last two camps and loved every minute of both of them. Camp info comes out in OUTREACH a free publication we put together you can find past issues online at http://ubpn.org/outreach.html
and to sign up for new issues send you name and address to Nancy Birk at nancy@ubpn.org The new issue should come out sometime in the next couple months.

Wisconsin also has a group that has put together a gathering in the past, I went to one I think three years ago. I am also considering something for this summer as I will be staying in Duluth, MN to work. I will keep you posted on that if it is something you are interested in.

Hope your days are getting better knowing that you are not the only one any more! Keep your chin up, there is always a chance for change! I am almost 21 years old and still making progress with my arm function.

Hugs,
Amy 20 years old ROBPI from MN

Thanks, Amy. I'd love to go to the camp in 2009 I assume. A shame it has to wait so long. I read up on some of the threads about it and it sounds like something I'd really benefit from - speaking face to face with those with the same injury. I cant even fathom that right now...I've never even known someone who already knew about my injury. Everyone I was ever friends with listened to me briefly say (as a child) that it didnt bend straight due to how I was born. I'd laugh and say "Screw that doctor!" and get everyone to laugh (i used to be very outgoing).

My grampa (a huge part of my life) died when i was 18. I think thats when i became more introverted. I keep to myself mainly and have a lot since then. More things to work out with a councelor I'm guessing. His death really hurt me for a long time there. Its still hard visiting his grave twice a year (out of state). My gram and I miss him dearly. So now, she is my family. I finally started to tell her I loved her though and put my arm around her as we said our prayers during thanksgiving. Its hard coming from a world where no one says "i love you"...to try to change that after so many years is an odd feeling believe it or not.

But at the same time i want her to know that she isa big part of my life and so was grampa. bleh. rambling at this point! There is just a lot of deep seated emotion in my life...too many bad aspects that have been hidden for so long.

Caiti,
I am late reading this thread. I've been in exams the last week.
I am glad that you have found us and that you are going to seek help. We all need support, sometimes more, sometimes less.
I have a few really close friends who understand me and my medical issues (I have 2 major ones) and they don't care one bit. Like you, I dropped all the "friends" that disrespected me or were nasty.
I am lucky now, I am in Nursing and so am in a program where people are supposed to be non-judgmental and whatnot (though there are a few!)
My hand is good too, like you. I am able to straighten my arm though, but my shoulder is very affected. It is permanently sub-luxated (the joint hangs low in the socket). I have very little active external rotation and cannot raise my arm past shoulder level without arching my back.
Anyhow, feel free to email me anytime!
And I do hope that you can come to UBPN Camp 2009 in Florida! I LOVED my first Camp experience this year, I was able to finally meet Amy and Kath and Carolyn, just to name a few!
I have pictures from it in my photobucket account and some on my blog.
Marieke (32, LOBPI)
http://nurse-to-be08.blogspot.com
http://s19.photobucket.com/albums/b162/marieke2005/?

Caiti
After you print out all the materials for your doctor and read through some of the Outreach publications, you will feel very empowered!
I still go to doctors who give me the blank look and pretend they know what I am talking about when I mention my arm. They really seem uncomfortable... but the BIG thing is... I AM NO LONGER UNCOMFORTABLE. I have learned so much from the Message Board and the parents. Knowledge is power and the more knowledge we have about our injury the more comfortable we are.

One of the greatest moments for me was meeting Nancy, Judy and Ryan (TBPI), in FL at a small gathering. When I first found UBPN it seemed to be all parents and only a very few obpi adults. Now unfortunately we have grown and we find that there are so many of us who thought we were alone. Being alone is one of the most emotionally sad parts of this injury. It's amazing, at a gathering, to see how comfortable the children become as the play with other bpi kids. How I wish I had another person who understood when I was young.

You will make friends but you need to be your own friend first and make some peace with your arm. It's not that you won't get frustrated or annoyed... It's just that you won't let anyone make you feel bad about you anymore.
You will have knowledge and friends here who will support and understand you and your frustrations. Once you are really comfortable and have gained more information about your injury YOU will be in charge... and feel confident...

I know I'm going on and on but I really feel for you right now... You feel so alone and I remember that feeling at times... I always felt so different and was not sure if it was my arm or just me... I know now it was my feeling about my arm. I have had the same group of friends since I was 18 right after HS. I was so unhappy in school... I did not understand it was my feelings about my arm that made me feel different. I am amazed at my self because I'm comfortable enough to promote Awareness and Prevention.
I really don't care what others think of my arm. This is the confidence I gained from having bpi friends who understand and can let me vent if I have to.

My husband did not notice my arm and I had to keep explaining it to him. My kids never really noticed it and my grandchildren really have not noticed. I taught them about it because my granddaughter has a friend with OBPI.
We are much more aware of how we look yet our real frustration lies in the way we function.

I am so much more than an arm and I will not now,nor have I ever been defined by my arm.
People tried and in High School my life was a horror... But I made it! You will now, that you have support.

Hugs to you
Kath robpi/adult

hey crw

Name is brian new to this site also, I'm 19 from Ontario. I have faced some of the same bullshit that your talking about. Don't give up on having fun there are people out there that would be lucky to hang out with you and have a few drinks. Don't stop being outgoing I can tell by reading your post your an intelligent and funny girl, don't get away from that. If you need someone to talk to i'm here.

peace

Caiti, sorry to Hijack your thread

But I wanted to welcome Brian to the site as well! Feel free to ask us anything!

Amy 20 years old ROBPI from MN

Kath - You are too inspiring...you need to stop. I kid!

I'm thankful for all the encouragement. We'll see how counseling helps and go from there.

Brian - thankyou for the compliment. I like to believe I'm rather intelligent...but when you read a million books to avoid the public on "bad days"...you seem to grow a large brain! kidding

I'm afraid I havent been nearly as outgoing since my grampa passed almost 5 years ago. Just one more thing I need to deal with I suppose.

Amazing how one day you can feel so alone and do one google search and find the world in one message board.

Caiti,
Kath always says it all so much better than I..isn't she wise? Sometimes I just click on her name or type it in the "Search Box" and read a few at a time when I need to know someone else feels/felt the same way as I.

I am thinking about you every day and am grateful you are "on the track" and coming here to share with us. It reminds me how far I've come too, since finding UBPN Family in 2004.

..oh , I just want to add that the reason I prefer Brachial Plexus Birth Unjury to Erb's Palsy is that people always "heard" Cerebral Palsy and assumed that instead. BTW, the 2 have alot in common but are very diferent injuries.some of us have a combination of both also. I was informed by a Specialist. That is interesting to! I certainly agree with Kath that Knowledge is empowering, and freeing too! It is that for me.

HUGS, all
Carolyn J

I used to always say "Erb's Duchenne Palsy"...and get a blank stare so I'd immediately state "my right arm doesn't work as it should - that's about it"...they'd nod and that would be the end of it.

I never knew it was called BPI or could be - until this past year when I began researching on my own. The only information I had previously gotten from my parents was Erb's Palsy since I assume thats what the doctor said to them. They never researched further - so that was what I was deemed. An Erb's Victim.