United Brachial Plexus Network, Inc.

Susan,

Hang tough.

We're all with you.

Henry

Sue--I know. I've been fighting to stay alive for 10 years this Dec. 12. I've been off the site for awhile because there just doesn't seem to be much point in sitting here telling my sad sad story and listening to the same from everybody else. But please-don't take my hope from me--if you can make it one day at a time, then so can I.We have to hope for a cure or treatment. And every one of us who fights one more day gives the rest of us one more day of hope. And that's all I have left anymore. your friend---Ronin

Well it's been almost 2 years since I posted this message and my opinion hasn't changed. i'm so god damn sick and tired of people telling me stories of how people are traumatically injured and then pick up the peices and move on. There's nothing solid to pick up. It's just a big oozing mass of pain and depression that I can't seem to form into a semblance of life. So many vicious cycles, going round and round and not getting anywhere. I'm 31 and just praying for it all to end. I'm so so tired.

People tell me to be hopeful because technology is improving every day and maybe, just maybe, if I hold on long enough, a miricle cure will come. That's just like hoping you'll win the lottery, while in the meantime you put yourself into debt because the winning ticket will come one day. I can't bank my life on something that might happen.

My doctor says if the pain gets too bad just get DREZ. That's just a lot of wasted money and more trauma to the body for a procedure that wears off over time. And medications don't do sh#t. I'm on them and I still can't hold a conversation without dropping my chin to my chest in a bout of pain.

For two years I've been looking for someone on these boards to give me hope, but all there is , is pain and frustration. The ship is sinking and I personally can't wait to go down.

Susan...... I am sorry to hear that you are feeling like this. I Understand completly HOWEVER there is som uch here that you need to do! You are young!!! Have you tried Methadone? I think that is what Judy takes and is now pain free. Have you talked with Dr. B about this?? I think if my brain is working proprtly you see him. TALK TO US!!! DONT LET THE PAIN WIN!

COurt

Sue,

Please try the meth. It really does work for the pain. The side effects are minimal and the decrease in pain gives your soul a chance to heal, to catch a breath. If you want to talk about it, email me your number and I'll phone you.

Don't let the f@#$%kers win.

Henry

Susan...
You nail it on the head pretty hard and straight. I regret to say that I echo your honesty. As horrible as it is, your honesty provides solace to those of us that share your feelings and experiences. I only hope that you realize the gift you give with your voice. It helps to release us from the isolation we've inherited from this pain and depression. I, unfortunately, only come around here when I'm either very down, or starting to feel invincible again. So any entry of mine is probably filled with commiserating misery, or some bland medical recommendation. Unfortunately, not any hope in my recipe just yet. If this experience is to make us wiser, I'm not there yet either, but I feel it building up inside. I just hope I can make sense of it all and put it to some kind of use some day. I want this whole damn experience to have some kind of value in my life, as well as to the lives that I love and encounter. It's not there yet, in fact it's been nothing but a major detractor from my life, energy, and essence from who I used to be. But I do have days when I can imagine it working out and me being better for it all. And that is what feels the best, if I can, at least for a few moments, see myself in my mind with this damnation working out and making me a better man that can still love and enjoy life to the degree that I deem valuable and necessary, than I know I can get there. I know I can't until I see it in my minds eye. Doing it is the bitch for me, it's going to take every ounce or courage and strength I got and then some. I read your original entry here and realize that I'm not alone and for some reason it makes me stronger. I find that a bit embarrassing and shameful to admit, but this isolation is the real killer. When I turn to these boards for comfort, and find another kid's mother, father, sister, or whomever is frantically searching for answers and help to pull their loved one out of this hell, it kills me, but f*@k that's life and always will be. I don't know what I'm getting at, only that I appreciate your honesty and wish you more strength and happiness than you know what to do with... I wish I could take you out for a drink and a laugh and make you forget it all, at least for a moment. Call out anytime...

Christopher

Punchy Sue,
Hello we all know what you are going thru, Remember this you are not alone. You got to go and be with family and friends. You have hold your head up high and be proud, you can not give up on this fight to onna be better and that day will come. Susan my name is Wes i was injuried last June 2004 i still have all the nerve pain that onces to control my life but i refuse to let it, it is hard sometimes but the more you smile and find that happiness it no longer wants to control you. thru all of my bad luck with injury i have currently lost my wife and two boys because we have new lives and can't find each other in it so she is moving on. BUT that is not gonna get me down i have two hurles now in life to over come and i WILL with a smile on my face because the good lord has me with him. SO PLEASE TALK TO SOME ONE. iT DON'T SEEM FAIR AND WE ASK WHY ME, WELL THE GOOD LORD HAS PLANS FOR ALL OF US AND WE THE INJURED IT IS GREAT PLANS SO HANG IN THERE AND INJOY LIFE IT IS SO SHORT, PLEASE TALK TO SOME ONE IT DOES HELP!


Wes

Sue
Hang in there girl. I also fight the pain with methadone. Works with no buzz and less side afects than most. Don't get hung up on others BS. Find something that gives you some relief so you can get some quality back to your life and the distractions living again will be the best pain reliever. I am not far from you in Richmond. Give me a call 304 298 4878

Hi Punchy Sue,

I had to sit and watch my 17 year old son cry with the pain asking me to tell the Doctors make it go away. I cried as well I felt so bloody helpless. Two years on and with surgery he is virtually pain free, yes he gets whats called stingers now and again but nothing he cant cope with.

The operation is worth it. ok your arm will never be the same but the surgery ends the pain.

By you not having surgery immediately I imagine you are not from England. My son is under Prof Birch he is one of the best doctors in the world. Prof Birch recommends surgery within two weeks of the accident which gives the nerves a better chance to repair. My son had his opp 4 days after the accident.

I hope you are soon pain free, please dont end it. whilst there is life there is hope. There are stronger, better drugs to help you through until you have corrective surgery.

Hi to all-

I appreciate the concern, but I think some how you've missed my point. What's wrong with stating the truth? The facts are the facts and it doesn't help to sugar coat them because there's nothing sweet about this injury. Yes I do get suicidal about the pain and depression. Who of you out there can say they don't or haven't? And it's so much more complex then just the physical and mental aspects of the injury. It's about the loss of life without actually dying.

Since I wasn't injured at birth, I have a very clear perspective point on what life can be. Relative to what I was accoustomed to, I have nothing now except this injury. This is because the injury includes lossing my career, moving to a new place and starting over with no basis of friends, the inability to form new friends because of mental fears, the inability of starting a new career because lack of income to finance it, and most importantly, the loss of pride and self-respect as a result from all the above.

I do not believe the solution comes in the form of a pill or a surgery. I am on medication and I have had surgery and at this point, I do not believe that adding more of either of these options can improve my situation. I do believe that there is the possibility of "improvement" that has everything to do with me personally. It is my life and it is my responsibility to make the most of it. It's like they say with addiction, only you can choose to get better.

So here-in lies my delemma. Why can I not find it within myself to move on and to let go. Maybe it's fear stemming from PTSD or maybe it's just a flaw within myself. I'm not sure, but if counselling, medications, surgery, praying, pleading, crying, yelling, demanding, meditating, cussing, whimpering, etc. has not spurned me to move on, then maybe I'm broken. Like i'm a piece of china that was dropped and there just too many peices to glue back together to make anything worth looking at, let alone using. And what happens to that broken china - atrophy. It's matter decomposes and returns to the circle of life's energy and becomes a building block for new life. That's beautiful and that's the way life works. Since I'm in a state of inertia, why not be hopeful for a time when body can fuel something that contributes to life.

Some will say that it would be selfish of me to go, but isn't also selfish of me to stay seeing how I bring so much pain and concern from those around me. All of that energy could be put into such greater things. Note to everyone, I'm not saying I'm going to kill myself, I just think the topic should be discussed in a factual and honest way.

I do believe this is a cruel injury because the pain is unimaginably strong and ever-present. For me personally, it has broken my life into so many pieces, that through my pain stricken, eternally depressed eyes, I can't seem to find a way to pick the pieces up. I do think of suicide often, but I don't believe in anyway it is an easy way out. I cherish the beauty of life and would not give it up unless i saw no other way. i'll end on this. Imagine I were a beloved pet of yours, and we had spent many years running and playing and had forged a uncondional bond of love. Unfortunally, I was hit by a car and became injuried in a way that no surgery or medication would take me out of the pain. And every day you had to get up a see me writhing in pain, unable to walk down the steps to use the bathroom, no more excitement in my eyes. Would it be selfish of you to put me down to save me from years of uncurable pain? Or, because of the unconditional love, would you not want me to live in agony for years just so that I, your pet, could still be your companion in life?

So is it selfish to put yourself out of your misery or is it selfish for other people to want to keep you around even though you're miserable? That's the big question and certain respect should be given to the decision maker because life is not black and white. It is complex and it is beatifully, but sometimes it can become very ugly.

THANX LOVE SUSAN