United Brachial Plexus Network, Inc.

Hi everyone
Thanks for the replies to the acupunture question and the good news that the paihn will eventually ease. Sean is really struggling and is not going to physio or keeping his appointments with his doctors. He has dropped the ball at this point and we are all working hard to support him through it. He has been to one hypnotherapy session and was pretty happy with the techniques the doctor showed him. I stayed for the first half of the session and was interested to hear the questions that the doc asked. One was how to measure the pain on a scale from 1 - 10, while the other was to measure the suffering on the same scale. I guess I hadn't made a distinction. Anyway Sean is planning to go to the next session and I really hope that he does. The hypnotherapy won't take the pain away but will redirect the mind's focus to other ares to lessen the response. I pray that this will soon end and that my precious son will not have to suffer anymore. The tears are flowing again.
May God grant those who can find the answer to fixing this injury the blessing to do just that.
Love to all
Moira

Hi Moira
Hope you dont mind me responding, I'm only the wife of a BPI (BigSel), but I could cry for you. I remember in the beginning how bad It was. My lowest moment ever (Im crying now remembering)was seeing my man rocking back and forward on our bed crying in pain and I couldnt do a thing for him. I phoned the doctor in tears hoping he had a miracle cure but all he could do was send him into hospital for pain managment! But we've come a long way since then (3 years next month) and things are good now. Its a hard battle but somehow your life returns to some kind of normal. The turning point for me (but I dont know if Sel will agree) is when Sel seemed to accept the pain was very badly affected by his mood, how tired he was, how much he was dwelling on it etc. I can remember being in the doctors surgery (surprise surprise) and the radio was playing, I turned to Sel and asked him a question about the song, but he hadn't heard a thing! I used to call it his bubble "your in that bubble or yours and you see nothing else but you and your pain" was a phrase I used. He permenantly had his head down and his bad arm held by his good hand. The best quote I ever heard was from his pain team "Your going to be in pain anyway so your as well doing something in pain than sitting at home thinking about being in pain and doing nothing" (which in itself brings you lower). I'm afraid I can only advise you how I cope. Sympathy, molly coddling, running after, fussing, whatever you would call it is not good. When Sel gets bad (which happens less and less now thankfully) I let it go so long, I can see him getting down, the pain going up, him doing less and then I start getting hard! I say that enough is enough, get a grip, give yourself a shake up and I make him go to the gym or go for a run or go shopping or whatever it is that needs doing. It is so easy to go down but a lot harder to get back up again. YOU have to make your son get back on the track of the living again. YOU have to MAKE him do things again, drag him out of bed, shout, tell him to stop feelling sorry for himself - whatever it takes but be hard and above all else be strong. The only problem I have is he sometimes throws in my face the "you dont know what its like, you dont understand, you think its all in my head", but he knows I do understand and care and I only do it to help him. I could go on all day, but I had better stop now. Please feel free to e-mail if you need to talk or anything, I hope this helps and you dont think I'm a hard cow!

Take care
Carol

The trick for me to get the pain to start leveling off was figuring out what trigged it to go off. My biggest enemy was stress! I am very careful now that I avoid anything that causes stress. Trust me it is not always fun or easy to walk away from the things that cause me stress but I do it because I have to be able to live. Another thing was my arm does not like temperature changes. It can't stand even a slight change so I layer clothes in the winter and summer. People sometimes stare because I am wearing a sweatshirt and it is 70 degrees but I don't care because I can keep the pain within limits that I can live with. My arm hates breezes/wind so same thing as with temperature changes I just work around it.
I refuse to let this arm control my life and I work very hard every moment of every day to not let it rule my life.
I will say some prayers and light a candle for your son when I go to church.
God bless
Mindy