United Brachial Plexus Network, Inc.

Why is this injury so cruel? So I had an accident and hurt my arm and probably will never use it again. When I was told this, I didn't cry. I just said so be it and was happy to just be alive. Then I started getting this pain and it grew and grew and grew. I goto the docter- what's wrong? He says it's nerve damage and pain is an unfortunate by-product of my injury. There is nothing I can do to fix it. Medicine just seems to take the edge off- but at the cost of my memory, sanity and excretory tract. I wake up every morning in so much pain. It just builds and builds until it hurts so bad that I have to get up to take some medicine. Then I just have to wait it out until it mellows. I decide to have surgery because if its not done within 6 months, my chances are less to have sucess. Well my chances now are only 50/50-and for what cost. I have deformed my body and traumatized it more and it screams this message to me all day long. My poor fileted chest. I guess I'm just trying to ask what is there left living for. I have no children, my dog's afraid to be around me and I have lost my career. My parents say there are so many people who will miss me. Well, I'm sorry because I'm already gone- I am not the fun loving person I used to be. That's how people know me and that's how they will remember me. Not this crying mess of a person who can't escape her pain- ever. I don't want this life. I was happy just to be alive without the arm but I can't fathom another 40 years, let alone one year with this pain. I spend so much of my energy trying to make people think I'm ok, but that's just to make them feel better. I'm not ok. This injury is so cruel- I have a life sentence of pain and agony and I only know one way out.

Punchy Sue

Life is precious... you are scaring me... if you are saying you don't want to live because of current pain please...please.... know that it takes time to overcome the pain... your injury is new compared to others... I am OBPI and have lived with this injury for 64 years...

I also live with the results of two family members taking their own lives... one followed the other in a 10 day period... and that is far worse than any bpi pain. It is as painful to family and friends as bpi or worse because there is no longer any hope.Where there is life there is always hope...

I cannot imagine how awful you feel nor how bad the sudden shock of loosing your arm and the awful pain of it. I wish I had some way to help you but I can only say that your life is much more than you feel it is right now... people love you for YOU... and in good times when you make them smile and bad times when you need someone to support and help you... your parents need you... your friends need you... and from reading your posts you are a GREAT asset to this TBPI message board. I read all your posts but I am obpi so its hard for me to truly contribute advice... I am also a mother and reading your post makes my heart break... you have a way out and up but it will take time to get out from under this mess... you know lizzy and jenny and lots of other folks have overcome to some extent the terrible pain you feel now...

This is a cruel injury and people don't get it that is true. They don't get it for obpi or tbpi because they don't understand or study it. We have no choice but to research and study all the information we can get and keep pushing the medical profession to do more. Pain control is very important - Judy T/ OBPI was just put on a very strong medication she did not post it but I am sure she will e-mail you with that information... she is really feeling much better. she says she feels no loss of function nor inability to live her life and is pain free. You need a pain specialist who will deal with your pain first so that you can make some really good life decisions and move forward with your life and build a new life for yourself... Please hang in there I know you are tired of putting up the front... so let your friends know how hard it is and how you need to be entertained and distracted instead you taking care of their joy... You may be very surprised at how willing they are to help you... they feel helpless and don't know what to do so TELL them how you feel and WHAT YOU NEED ... PLEASE.
Please feel free to e-mail me if I can help you in anyway I will...
Kath

Hi Susan...I am so so sorry that you are going thru this right now..it can be so bluddy hard I know to see the future when you are in so much pain and fearful of what life might be like. I wish with all my heart that I could be there to help you thru all this, and to help you see that there is a future and a very positive and happy life to live after such a traumatic injury as a BPI.

You are right; losing the arm is the least of this injury..the pain is a whole different thing...BUT and it IS a very BIG BUT....it DOES get a whole lot easier to manage as time goes by...there are hundreds of us out here who will tell you this; some of us have hardly any pain at all or none but this takes TIME and thats the real cruelty of this injury...it takes time.....when all you want to do is pick up the pieces and get on with your life.

Time is all you need and all your body needs to heal itself..it's healing now as you are reading this and as each day goes by, you are getting better. Give yourself a chance to recover from the surgery; look forward to something good...how about coming over to dear old Blighty and the TBPI gathering and sampling a few beers with us? ;0)I am seriously looking forward to meeting you one day and all me mates from the USA and Canada on these boards; don't waste any more energy putting on an act to make people think you are OK; you probably aren't foolin 'em anyway....spend the energy on you...

I know this sounds easy but try and find something to do that will totally occupy your mind. I took up jewellery making when I was first injured...oh how well I remember cursing and swearing in my best Anglo Saxon words at those ***ing beads when they wouldn't stay put...poor old Neil wouldn't come near me! BUT it helped so much with those first few months with the pain and after surgery....because I got mad at something, it helped me. Try something, anything and you'll find the days slip by real quick and one day, you realise you didn't feel the pain for a few hours at least, and that will be the start of getting your life back on track.

Don't let the pain win Susan; you're the boss...big hug coming your way (((HUG >>>

Liz B X

Punchy sue, I know this is the hardest obstacle of your life but you CAN make it through. I too have had these thoughts but I have survived through it and am continuing on with life and REFUSE to give up. It really scares me to hear you talk like this and i want you to think twice about what you are thinking, this is no way out. Your dog and your parents need you more than you know as I know my dog and mother need me. I have had a muscle transfer and still have alot of the original pain and yes my body is deformed but we are now unique in our own way, you are not alone. There is nothing wrong with talking to a proffesional to help you through this, don't be ashamed. If it were the other way around, I know it's not but If you did have a child and he or she were in your position you would miss them so bad no matter what disability they had. I have lost use of my arm, my job, my common law wife of thirteen years, my house and some of my freinds but there are still people that care and I need them and they need me. Your dog is not scared maybe just a bit confused and your dog needs you. I love my dog and I would never leave him for NOTHING! I hope you will listen and talk to your parents and hopfully talk to someone else that will help you through this. I didn't even have a 50-50 chance with my arm it was how it was but they transfered a muscle to help my arm bend. Sure my body is re-aranged and i live with pain I'm not denying that but since, I have fufilled dreams and taken on wonderfull hobbies to help me deal with this, along with the support of my mother and other people who love me and of course my pets which i love very much. Cruelty can sometimes have the greatest outcomes and will DEFINATLY make you a stronger person, you will see. I am now in tears and I hope you quit thinking the way you are and start thinking positive about your sugeries and life in general because the more that make it through this hard time we are having the stronger and happier we will all be. Please e-mail me personaly if you want to talk and please give your dog and parents a hug and tell them you will never leave them. I will talk to you soon.
Mark

Hi Susan,

I am so sorry you are in so much pain.
Please consider surgery, I had surgery for my brachial plexus injury at 6 months after the trauma. I, ofcourse, do not know the extent of your injury.
After exploration of the site my surgeon discovered I had two and a half avulsed nerves (nerves torn out of my spine). He made the decision there and then to perform a nerve graft to enervate my right bicep, I would otherwise have had a flail arm and would have had to have it amputated.
I get some pain called stingers. Like an electrical shock to my useless hand. I can go for days without it, I have a feeling its caused by overwork or shock to the system.
Last Saturday I almost drowned, and have suffered stingers very badly since.
I am off to the doctors today to have my lung capacity checked out. I feel that once the specialists have done all they can for you, then you are left to sink or swim, well I almost sank! Even though I was a champion swimer in my youth.
I have had to learn to ask for help, especially since my husband died, its sometimes hard, but Susan, there is plenty of help out there and I encourage you to go for it!
Good luck,
Georgina.

I know words do not take away the pain but this is my favorite REM song and I believe it to be applicable. Please know that this world would miss you, no matter what you think right now!

Everybody Hurts
From: Automatic For The People
When the day is long and the night, the night is yours alone,
when you're sure you've had enough of this life, well hang on.
Don't let yourself go, everybody cries and everybody hurts sometimes.

Sometimes everything is wrong. Now it's time to sing along.
When your day is night alone, (hold on, hold on)
if you feel like letting go, (hold on)
when you think you've had too much of this life, well hang on.

Everybody hurts. Take comfort in your friends.
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand.
If you feel like you're alone, no, no, no, you are not alone

If you're on your own in this life, the days and nights are long,
when you think you've had too much of this life to hang on.

Well, everybody hurts sometimes,
everybody cries. And everybody hurts sometimes.
And everybody hurts sometimes. So, hold on, hold on.
Hold on, hold on. Hold on, hold on. Hold on, hold on. (repeat & fade)
(Everybody hurts. You are not alone.)

Applicable copyright is implicit (Copyright © R.E.M./Athens Ltd. for all R.E.M. originals).

Dear Susan,

I am so sorry to read what you are going through. Eventhou I have never gone through the pain, I did see what Ryan has gone through and know it is very hard. Please read what every one else has written to you and keep your spirits up.

We all are here for you. Please let us hear from you often. If you need to email us do it. Please don't feel that you have to go through this alone.

Here is a hug for you,

Karen

Susan, pick up the phone and call someone, please. Just talking takes your pain away.

Susan I agree with Allison and I have emailed you about it! We are all hear for each other and these are the times that you need to lean on us! Kim that is a great song! I THink it dshould be the BPI them song!!!!! Susan hang in there and check your email!
COurtney