Introductions thanks to 20/20...lurkers welcome

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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Kathleen
Posts: 1012
Joined: Sat Nov 03, 2001 5:33 pm

Introductions thanks to 20/20...lurkers welcome

Post by Kathleen »

Nancy suggested we do a roll call.... on another post… I just thought I would take it a step further and create a Who’s Who of Adult/and friends….

Because of the 20/20 show there are so many new adult/obpi posting.... that we also need a post so that all the newbies can connect... Some of us have been regular posters for the past two years.... some of you (and you know who you are) just read the board and never post.... Today is the day...step up...sign in....
Welcome to all the new people...
Please Post and introduce your self here again. So that we can all come together on the same page and learn Who’s -- Who... LOL...

And Tina I am playing the hall Monitor again after all I am the oldest obpi baby….....LOL...

My name is Kathleen…. Aka Kath….
I am an adult right obpi... I have Horner's limited use of the right arm can use my hand but the ring finger and pinkie are very weak. Scapular winging
I cannot supinate, touch my face, eat or comb my hair---you all know that drill... When I found these boards there were only a few obpi and we began to compare notes... we learned so many little things about our selves and our common injury....
The day I found out that I was not the only one to walk around with something in my hand and not be aware it was there was…. Great!!!
Many reported that they seem to hold things in the bpi hand for long period of time and we don't realize that something is in our hand... I seem to missing body boundary… that is why I bump into things banging walls etc.. with my elbow... the inability to feel true hot... I cannot tolerate anything cold on bpi arm... also my arm face and neck freezing cold arm while sleeping... because of poor circulation….on bpi side.

I found this board 2 years ago last December... It was such a shock to me to find out I was not one of the very rare birth injured. During the course of these past two years I have learned so much about obpi and the many areas of my life it touches. I knew how to live with it but I did not know any of the medical terms connected with this injury. Until two years ago I only knew the name Erb’s Palsy… now I never use that name because it sounds like something you put in a salad and more like a disease or birth defect instead of what it really is a birth injury.

I learned to ask a very important question of all doctors treating me---- “How many other obpi have they seen or treated?” the reason I ask this is because over the course of my life when ever I went to a doctor and asked about my arm or complained I got one very pat and dishonest answer… “You look great, I can hardly notice, wow you are one of the lucky ones…you healed so well” Those doctors often have never cared for obpi and really did not know what they were saying but never admitted that they knew nothing about obpi for those of us who did not resolved and were more severely injured. They never even touch my arm nor asked about it even when my back was out etc… they were not aware of the full extent of this injury… So read the Awareness pages… check the part for injured baby because that is where you will get the most information on this injury and how it happened to you

Ask any question NOTHING is silly.... Now there are Mommies who come here regularly too...so you lurking Moms... say Hi too....
Kath
Kathleen
Posts: 1012
Joined: Sat Nov 03, 2001 5:33 pm

Re: Introductions thanks to 20/20...lurkers welcome

Post by Kathleen »

One more thing... I used spell check in Word...and get ???? marks in the wrong place...

thats another thing... I could never learn to spell and I blame obpi....LOL... it works for me!!
Kath
TINA-T
Posts: 90
Joined: Sat Nov 03, 2001 9:57 am

Re: Introductions thanks to 20/20...lurkers welcome

Post by TINA-T »

Tina....Aka Tbaby and TINA (in caps)

I'm from Michigan and was born 45 years ago with a Bilateral injury. Yes, that means BOTH my arms are affected. The right is much worse as far as weakness and rom. Of course I can't touch the top or back of my head with it hahaha So when you all are complaining about A slouching shoulder........think of poor me :( Forget bra straps (ala naturale is always best i think ) shoulder purses or anything with those cool little spaghetti straps............in fact my Mother bless her heart had to sew me into my wedding dress, which made for much fun for John later that night haha OK I'm rambling which if you know me you've come to expect hahahahaHAHAHAHAHHAHAHAHHA
I have lived a very wonderful life, I'm not saying my birth injury did not make things rough....but more so, because of it, it made me the person I am today.........I think we have all agreed many times that this injury has brought out a sense of humor in each and every one of us that may not have been there without the arms???? It also made me a strong person, but who knows maybe these things were always there????????

OK, enough prattling.............WE KNOW YOUR OUT THERE!! SO SIGN IN AND SPEAK UP........ WE DON'T BITE...REALLY

Well Kath and I might haha and I'm not sure bout Judy's yard pets either??
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patpxc
Posts: 315
Joined: Sat Nov 03, 2001 1:06 am
Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis
Location: Ohio

Re: Introductions thanks to 20/20...lurkers welcome

Post by patpxc »

Hi, I'm Pat 48 year old Right OBPI. I can touch my face but can't comb my hair. I can feed myself a cookie but can't use a spoon or fork. My hand doesn't turn over, I have elbow contractions and the arm doesn't go over my head. I've been on disability for a year because of overuse which destroyed my good arm- severe arthritis, carpal tunnel pronator teres syndrome to name a few.
My life has been full. I was a nurse and worked in a lot of different areas. Most recently, I trveled around the country and taught staff in state mental hospitals to use a computer program.
I have two kids and one perfectly wonderful granddaughter.
This board has been a Godsend to me. I thought I was the only one with Erb's. All the little things that have frustrated me throughout my life are things that have done the same for the folks here
If you're new here, you;ll find some good information and a group of mighty nice people--although there are a few who are a little warped-and --a few wino's-- YOU GUYS KNOW i'M KIDDING!!!!!!!?????
PAT
Kathleen
Posts: 1012
Joined: Sat Nov 03, 2001 5:33 pm

Re: Introductions thanks to 20/20...lurkers welcome

Post by Kathleen »

Oh my gosh! I just read my own post...duh...

Will the person I sent my sense of humor to in my last e-mail..... please send it back.... I did not mean to attach it!!!!

Well at least send me the wine....LOL....

Sorry so serious!!!! I really do feel that I have done very well and am basically a happy person... cheerful person... honest...LOL
guess that was a little left of 20/20....

Kath
Tessie258
Posts: 769
Joined: Fri Nov 09, 2001 8:15 pm

Re: Introductions thanks to 20/20...lurkers welcome

Post by Tessie258 »

There's a list started on the general board too.

I'm a mom, my name is Teresa(aka-Tessie258)...My son Is Jameson. He's 12(almost 13)...He's not having a good time right now...adolescence is rough normally without having to deal with this too. He's a really great kid...He'll be stronger because of all this but it's not easy now.
Stephanie
Posts: 72
Joined: Sun Nov 04, 2001 10:20 pm

Re: Introductions thanks to 20/20...lurkers welcome

Post by Stephanie »

Hi,
I'm Stephanie. I'm 51 years on the planet with a left OBPI. I have limited use of my left hand, cannot type with it, no manual dexterity in the fingers.Can't lift my arm over my head or extend it straight or forward.
I can turn my hand due to one of the four surgeries I had as a child. I can also carry things that have a handle on them with that hand.
I am married, have two sons 19 and turning 22. I've worked at the county library for 27 years and am hoping (wishing) to retire at 55. I also have carpal tunnel and arthritis in the "good" arm from overuse,
something that seems to catch up with all of us as we age.
Now about the sense of humor that goes along with this, I'll just leave you with an example.
Everyone at work thinks I'm "looney" because I have a "mock" Star newspaper cover hanging over my desk. It's a picture of myself at thirty locked in an embrace with Brad Pitt!! The caption says: "Brad Dumps Jen For Jersey Mother of Two!" My son and I made it on the computer...I have never laughed so hard in my life as I did at the final result! Things can get "tense" in the reference dept. office during school time...someone has to break the "Shakeaspeare" routine, don't you think?! Hey Paul McCartney is engaged to a woman with one leg...why can't Brad love a gal with a BPI?! LOL !

Anytime any of you would like to chat off the board, please feel free to e-mail me!

Take care,
-Stephanie
Carolyn
Posts: 22
Joined: Sun Mar 10, 2002 10:36 pm

Re: Introductions thanks to 20/20...lurkers welcome

Post by Carolyn »

I'm so glad I found this group!

I'm 29, a lawyer in Los Angeles, with left OBPI and Horner's syndrome to boot. I have use of my shoulder and can flex my elbow, which I use to carry things like a can of diet coke, but to release my elbow I just use gravity. I have no use of my wrist, hand or fingers, and no feeling whatsoever below the elbow. That's gotten me into trouble, like burning my hand on the stove as a kid, and more recently, breaking my thumb without even realizing it! I had surgery at 18 to turn my forearm around and fuse my floppy wrist, so now my arm looks more normal, except its about 8 inches too short, my hand is about 2/3 the size of my right hand, oh, and lets not mention the scar! Though I can't use my left arm or hand for much, I can tie my shoes, braid my hair, and type really fast with my right.

My biggest complaint, though, is the shooting pain I get up and down my arm. Does anyone else have this? It happens about once every few months when I'm sick, with a fever, or I'm stressed and overtired. I'm on Neurontin, which I don't think works too well, but the only solution in the past has been heavy narcotics, which knock me out for days and to which I've built up a bit of a tolerance -- 1 Vicodin now feels like an aspirin!

I'm not in a relationship now, but look forward to marriage and kids. I had plenty of practice changing diapers single handed growing up as designated babysitter for my three much younger siblings.

Well, that's me in a nutshell. I hope everyone else joins the "roll call." Your stories are great, and really mean a lot to me, whose never met another OBPI in all my years.

Carolyn Young
Joy in FL
Posts: 357
Joined: Sun Nov 04, 2001 8:36 pm
Location: Georgia

Re: Introductions thanks to 20/20...lurkers welcome

Post by Joy in FL »

Since this is the OBPI board I guess I would be considered a lurker since I am TBPI. However, I post on all the boards.

I am Joy from beautiful St. Cloud, Florida. I suffered a left BPI from a car accident in 1991.

Hello and welcome to all the new folks.
Joy in FL is now living in Georgia!
Left TBI on October 31, 1991
User avatar
patpxc
Posts: 315
Joined: Sat Nov 03, 2001 1:06 am
Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis
Location: Ohio

Re: Introductions thanks to 20/20...lurkers welcome

Post by patpxc »

Sense of humor?????????? Why don't we all rent one of thsoe really long row boats--left BPI on one side and right on the other.--call one of the major TV networks and tell him it's an Erb's marathon-take all the money from the pledges ,go to Europe ,get drunk and eat chocolate??????????????? Pat
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