United Brachial Plexus Network

I just read a post in here that is sticking with me. We all come to this site to find a cure, some help, friendship, etc... and I do believe that most (not all) people forget about the site once they get better. Can you blame them? No, but I just wanted to get this out there and ask that if you do get better---don't forget the rest of us and others that will come. Some of us are on here daily and some of us are on here weekly. If you found something that works, come on here monthly at least to show us there is a way or a hope to get better or learn to deal with it. I think that we learn to deal with more than anyone around us could ever imagine, but hearing good news from others is nice too. If I could I would stand guard at the emergency room so I could catch every TBPI patient that comes in. I'd tell them what they have, who to talk to about it and that they are not the only ones out there. I'd give them this site and the couple others that are filled with people just like them. I might not get better but it's nice to know there are others you can confide in.. Thank you for listening to me blah....blah....blah. Just thought it was important.

Chris

There's one flaw in your statement. You don't get better from TBPI. There is no cure that we keep from you. You do have to get on with your life and part of that is not being attached to this website everyday. Sometimes it's just a reminder of how much pain we went through in the beginning. Being able to separate your thinking from everything related to TBPI is an important step in what little recovery we have. There is life still going on outside the chains of this injury and the hope is to go through a whole day without consciously thinking about TBPI. I know there are alot of "old" TBPI people who lurk and listen to what newly injured people are saying and will give advice if they can help. At some point you have to stop being obsesssed with talking about your injury because you are more then just the injury. Don't forget that.
LOVE SUSAN

Your right there is no cure...But i beleive the nearest thing to being cured is the day when you dont give your unjury a second thought.

For me that day will proberbly be the last day i post on a tbpi website.

I post here but mainly on the UK site and have done for 5-6 years and at the minute im far from cured but hope to get there one day

punchy sue,
Your wrong...I have gotten better. Yah, my bicep and shoulder muscles still don't work any better than the day I crashed. But the fear and depression...you remember, we were both working through it. I remember reading your posts and tears rollimg down my cheeks. I never was very coordinated with my left hand anyway. Yes my head is in a much better place. I hope yours is too...Karl...

Karl - maybe my post was stated a little too bluntly, but it is misleading for newly injuried people to think that you get cured and it's dangerous. You can't just hold on to the thought that one day the injury will go away or more precisely, the pain, and at that point you can go back to your normal life. Tbpi is a life altering injury and you have to go through all the stages of emotions in order to get any remseblence of a life back. First denial - that it just can't be true. Then bargaining - you'ld do anything for it not to be. Thirdly anger - why the hell did it happen. Then depression - which can be ongoing because the pain feeds it. And finally, acceptance - it is what it is and it's out of your control.

I fell into a hole where i kept telling myself when I felt better, when I was strong again, I'd pick up the pieces of my broken life. When the pain goes away, I'd be able to be habby again. The problem is reality - that the pain remains. If I continued on the same track, I'd be waiting forever. I cannot choose to be better but a can choose to accept the pain and the injury and get on with my life. You have to accept that it is not the actual limitations of being TBPI that holds you back but more so you're precieved limitations that stops you. You're left waiting in eternal stagntion for things to get better so you can get on with your life. You have to accept that the difficulties are going to be undenialbly real and are going to remain there for the rest of your life. And from this point you can choose to give in or to get on with your life and make it the best it can possibly be.
WITH ALL MY LOVE SUSAN

Susan,
It appears the injury to your arm has caused your heart to grow. Thank you once again for putting into words what most of us cannot...Karl....

I am better, much better, and continue to see improvement with each month. My injury was in the beginning of Sept. 2004. I could do nothing with my left arm/wrist and very little with my fingers. I went through all the same emotions everyone else did, and yes pain is still an issue. The pain seems to be the one universal factor with everyone.
I was sent to an orthopedic doctor at first who knew nothing about my injury and told me to see a neurologist who was still baffled with my injury. At that point I figured I had better be pro active with my care for this type of injury. That is when I found this wonderful, whitty, diverse, caring, and informative group. That is also when I began to question my Dr. and suggested he refer me to Dr. Klein, something he was glad to do. I will see Dr. Klein on Feb. 7 for the first time.
Since the injury I can now raise my arm not quite above my head, but getting there. I can flex my wrist and bend my elbow in certain positions. I can extend my fingers and move them but they are very stiff, and not very flexable. I have no grip and almost no stength as far as being able to pick something up, and my arm/hand movements are still not steady or fluid. I can feel hot and cold but still have a lot of numbness from the shoulder down but mostly from the wrist down. Nerve damage produces very weird feelings and unrelenting pain. I can still not get comfortable at night without pain meds.
Yes, it is hard to tell some of you this. Maybe it was just a bad stretch/compression injury on my part, maybe it was not as bad as I thought? Maybe this is as good as it gets, maybe I will improve then go backward for a while? This is such a confusing injury and everyone's injury is unique to that person. All I know is I keep seeing improvement for the time being. As fo forgeting this group because of my improvement, never. I read almost daily but just don't post.
Annette

Susan
I've been trying to find a way to express what you said for years-when people ask when I'll recover from the injury I always say, I have recovered! OK, my arm doesn't work but I'm over that and have yet to find it limiting. I took a conscious decesion not to pursue treatment for more function after a while because I wanted to just get on with my life. My doctor fully supported me, he was not only concerned with the arm, he saw me as a whole person, I was very lucky. That was what brought me to acceptance, which as far as I'm concerned is recovery.
You put it so well, thank you :0)