Another question about appearance...

[admin]

Have many of you had people come and ask what's wrong with your arm? It's kind of funny- in the winter when I have long sleeved shirts and sweaters on, nobody notices. But in the spring and summer when I am wearing short sleeved or thin shirts, I get a lot more comments.

My right shoulder is kind of "built up" because I use it so much to compensate for the lack of use/ability I have in my arm, does that make sense?
My right arm appears to be about 4-5 inches shorter than my left. (That has something to do with the fact that I can't straighten my elbow all the way, in reality if I measured the length of both arms there is only a 2in difference)
My right arm is skinnier and has less muscle tone than my left.
I wish there was a way to post pictures! LOL I have a little family website with some pictures of me if any one is interested! That way you could probably see what the heck I am talking about! LOL
Anyway- there I go rambling again!
Anyone else have a noticable differance?

Katy

[hope16_05]

Katy,
I definitely know the feeling! My appearance is getting better after 2 years of OT and a lot of therapy at home. The muscle that is built up in your shoulder, does that cause you pain? Mine was also very built up for compensation and I was in OT 3x a week and the OT would not let my use that muscle to innitiate any movement so mine is finally getting back to being similar to my left arm.

I had a surgery in July this past summer and started college with a splint to protect the surgery, and so many people were asking whats wrong with my arm. Now I only have to wear a small splint on my hand if I am going to be using it a lot but people are begining to ask why I have circles on my arm. I use e-stim to retrain/strengthen the muscles in my arm that control my fingers and wrist and if I do not mark my electrode placements I lose them. so if I wear a short sleeve shirt many people notice.

I would love to see your web site! If you want post the link here or email me at hope16_05@hotmail.com I finally have a camera that I can use so I hope to be getting a few new pics posted on my site as well. The most recent I have posted is from November I think.

Do you mind if I ask where you are from?

Talk to you soon,
Amy 19 ROBPI from MN

[jep98056]

Katy:

Sometimes people ask me about my arm but not very often. They'll notice that I'm carrying it differently or am unable to reach for something. They usually ask "What did you do to it?", rather then "What is wrong with it?" I just tell them that I was injured at birth. Usually that's enough but some will want to know how it happened and I'll go into more details. I'll give one of the UBPN Awareness cards that I carry in my wallet. I've never encountered someone who is familiar with Erbs.

John P. (ROBPI)

[admin]

Hey there!

Ya know, the extra muscle in my shoulder doesn't nesessarily hurt. Well, it hasn't up until just recently. It has been bothering me lately.

I'll totally have to check out your webpage!

Here is ours.

http://www.babyjellybeans.com/web/do/site/home?ID=18616

It's just a big family page so it's mostly just pictures of my kiddos! I am in a few though! On the main page- you can probably see that my right shoulder is a lot higher than the left.

Anyway- I would be the big mama in the pictures!
Just click on a page topic on the left side and it'll take you to a ton a pictures! Warning- there are a TON! LOL

[admin]

Oops- I forgot to add, we are currently in Missouri.
(military stationed us here)

[admin]

That's cool John. Where do you get those cards from? Do you make your own? I think that's an excellent idea!

Most of the time I get- "Is there something wrong with your arm" or "Why don't you move your arm?"
I gotten a couple of classic ones that I try hard not to laugh at like "OMG are you having a stroke? What wrong with your arm?" Or of course "Is your arm broken or something?"
Some people are pretty creative with their questions!

One the the most interesting was when I was having my first baby. I had never mentioned anything about it beforehand, but when I ended up having an emergency c-section- they have to strap your arms on these arm rest thing while they are prepping you. Well, the poor surgical tech was trying to get my right arm to stretch out far enough to get the strap on. He called over a nurse to help him and they both has this bewildered look on there faces. I finally said, "Um, my arm can't do that!" LOL The poor dude was like, "Oh sorry" I was too drugged up at the moment to go any further into details but I explained it later on. LOL

[veggiebug]

It's strange when people finally notice my arm. I broke my arm about 2 years ago, and once I got my cast off people I worked with an knew for quite a while started asking my if my arm was bothering me because I wasn't using it much. I replied, I never use it much, then I would tell them I was injured at birth and I give them both names for it.

And people I knew when I was in school who were even in my gym classes through the years, didn't notice till I neared graduation.

So most of the time once they ask, they feel silly because they never noticed after all this time.
But I usually start out with the fun and shocking "I was an 11 pound baby and..." which has lots of entertainment value for me when their jaws drop.

Katy - I looked at your website, it was so cute. Your kids are adorable. Keep taking pictures, you can never have too many. I LOVED the unhappy pictures.

I'm in a MotherWell exercise class and so far no one has asked me about my arm. And I'm pretty sure it's more obvious there. And the suspense it getting to me, especially since a birth related class would be a good place to discuss awareness.

Take care,
-Traci

[Carolyn J]

Good Morning everyone,
Interesting stories all around this, huh?..Mine is that all thru my growing up my "funny looking" left arm & hand was a subject of teasing etc., then when I went AWAY from home to College I started carrying something in my arm(usually books..no bookbags in the 1950's!!) AT ALL TIMES and continued this throughout the rest of my college years and throughout my whole "career-life"; that was easy as a social worker always carries a notebook and always a pen in the hand! I guess I picked the right career as there was very little noticablity throughout. As for my limp(left side/leg is shorter), nobody ever seemed to notice or comment except when I left a Job at a hospital, the ONLY comment was from a pychiatrist I had worked with for 5 years said.."Oh, Carolyn! I always thought it was just your "very sexy" walk"..THAT was a greatest compliment in my life!!...now, in my 60's, everyone asks me when did I have my stroke!!...LOL
Hugs,
Carolyn J