United Brachial Plexus Network, Inc.

When I found this board years back I was excited to know people out there with this injury. My accident was back in 1987 and I have been a patient at Mayo Clinic since, my last surgery was one week ago. I have lived with injury since I was 17. I have had many life experiences, surgeries,and had 4 children. I have met with doctors all over the Chicago land area for pain related issues.
I guess what I'm trying to get to is that in the last year I have posted advice, questions and ideas and I get very little response in return. I have battled depression and lived 19 years with unbelievable pain and in the processes lost many friends. And I feel the same with these boards. I see the same people giving out their experiences, advice (some on here are parents not the actual person going through this injury) people who have had this injury for only 5-6 years. I really wish I could give some type of help or advice and no one seems to want to listen.
I must come across as not a nice person? rough? non-helpful? I just wonder why? Why am I losing friends and no one wants to listen to me?
I had to get that off my chest and hope that I get a response on my last post. Good luck to all of you.
Kath
in Chicago

All I can say is...it is not you, but your injury. My husband is only 1 year after his injury and our lives have been turned upside down! We are in counseling and my son is even on anti depressants all from his fall. We have lost so much due to this injury, but we still have hope. I just found this site yesterday and I enjoy it very much. I know in our situation we are all over the state with drs and do not always have the time to dedicate where we should! Please keep your hopes up, I have learned the hard way what pain meds can do to someone. Someday's it is hard for me to stand by my husband's side because he is no longer the man I married because of his fall.
But when push comes to shove I chose to marry him and will stick by him...no matter what.

Kath

I usually read your posts with interest and think you give some great support and help to others.
You share your life experiences and are a good example for newly injured people because you have moved on with your life even with the pain.

I have felt the same way myself a few times but then realized it was the place I was in that caused me to feel that way...

I have had 67 years of this injury and am still learning from others both OBPI and TBPI adults...

Next time you post information I hope those who read it just say thanks... I guess we all need a little Thank You once in a while so we know we are helping and others are reading.

Kath Robpi/adult

Kath, what is going on here? Where are you coming from? What is running through you little head!? You are scaring me!!!

You offer great advice! GOd knows you have been great to me!!

Where is this coming from??

Hows the arm doing?

I have just been sooooooo freaking busy I have not been around here much! WOrking full time and going to school full time kills me!!

TALK TO ME!!!

Courtney xxoo

Kath,

Sometimes I feel the same way. It's our brains - our woman brains. They make wild thoughts and they run away with us. I'm having a rough go myself - DH is not been home (work travel). It gets stressful and really old.

Don't be too hard on yourself. I think times like these, instead of trying to do more, is to stand back, take a breath and let everything pass. Otherwise, we get in the way of ourselves.

I know we don't always hear thanks or feel appreciation for what we have offered. Recently the phrase "Someone is always listening" has been comfortng. Though you don't know it, what you have offered someone may be doing them a world of good. Trust that.

I just started here on this board and I felt a little apprehensive myself, experiencing the same as you about the activity. But, "someone is always listening". Keep active in it. Don't fret. Besides, on other forums I've been know to be a pretty good thread killer! lol

We all do need a reminder sometimes though. Thanks and hang in

Kath,
I am one of the mothers you talk about. I read most posts on all the boards. I don't always answer as I(we) are much newer to this injury than many. I don't always have advice sometimes I'm just looking to see what everyone else is doing, trying, feeling, ect. Dustin's injury was 11/2/05. He hasn't had the surgeries like many so I don't have input sometimes, but it doesn't mean that what is posted is not helpful. We have been so greatful for many of the posts here. Without all you veterans that continue to offer help and support so many of us newbies would still be wondering in the dark. Several times I have read your posts and thought "Wow she's not that far from us" I have thought it would be great to meat you. We are about 4 hrs north in WI. But, alas like most of us there are so many things going on in life. This injury does seem to consume alot of time and energy in our family. We too have been to Mayo, Milwaukee, and drs around here. I would love to have a friend like you. I don't think it's you at all. I think we just don't always take the time to answer all posts. Please hang in there and know we all care. You are very helpfull.
Sue

I am still very new to this all myself being 9 months post injury. I can say this if it wasn't for the post that I have read so far I would of given up on my fight to get better. I just turned 35 and I have been having a hard time dealing with my LTBI. One thing for sure is when Im having a bad day I look to this site as a way to cope and deal with my problems. I would like to thank everyone for their post as you touched my heart and many others.

Kath,
I am also one of the mothers that reads all these posts. I have found a wealth of information here. The information given by everyone, including yourself, has helped me, my husband and my daughter get through and understand these injuries. I guess we are all looking for a quick and easy fix and we therefore don't always reply, but thank you for your input! And no it's not just you! Sue

Hi Kath,

It isn't you, it's this injury and what it does to people mentally as well as physically.

People who are newly injured will be going through so many mixed and often severe emotions, and any messageboard can seem very intimidating, particularly if the person is not used to this way of communicating.

If it wasn't for people on here unselfishly giving insight and input into the messageboards by posting regularly, then this place (like any other forum of its kind)would seem to die off slowly. Regular posters are the backbone of any community like this.

I say 'seem' to die off because when we don't get a reaction, good or bad from something we post, it is a little bit disappointing and quite hurtful at times, but you have to tell yourself, there are MANY MANY more people that read here, never post for one reason or another, but take great comfort in the fact that many of the 'oldies' stick around and make the place far more user friendly. Believe me, I know this for a fact from the many emails I get.

Don't be so hard on yourself...you are for sure doing far more good than you realise. :0)

I don't know if you know but we have a TBPI messageboard of our own where we do post on serious subjects, but unlike here, we do have a more lighthearted side which I think does make a difference. Have a look and see what you think.

http://pub28.ezboard.com/badultswithbra ... usinjuries

You are MORE than welcome to join us!

All the best...

Lizzy F

Hi Kath

I wish we were all not in this bord but I can not do anything about since I am a BPI so her we are and I thank everyone that has post to give information and I am sure everyone is try to help but when it comes to ask questions it is not always easy to have the right answer or the right comment since we all very different on circunstances, personality, the severity of our injury, level of pain, etc.

So I always try to apport when I feel I can