United Brachial Plexus Network, Inc.

Thank you for posting that letter.

I never even thought about how difficult a manacure would be!

Kath...I never realized either how much pain it was day to day, til I had my surgery last year. Right after, with the pain meds for the surgery, I really learned what it felt like to be free of the pain. It has made it more noticeable the everyday pain. (No one could ever miss the flare-ups)

But taking pain meds is an absolute last resort for me....I am highly affected by them, and often they will put me to sleep. Sometimes I am not sure if they stop the pain really or just render me unconscious and unaware of it. No one can live thier life that way.

Kamren, I posted re pain on the Traumatic site after seeing a news item this A.M.

http://ubpn.org/messageboard/thread ... read=11918

Kimberly
I am with you on the pain medications. I do not take any pain medications. It is not unusual for me to have reactions to drugs so I try to avoid them at all costs. When I was younger they would give me flexril and I would just sleep all the time. I did not want to live like that and avoid drugs that put me to sleep. I use PT and hot tub for pain management.
Kath

You will think this unbelievable but my oldest sister is a right BPI and I am a left BPI. She was injured at the c7 so can lift overhead but has a bent elbow. I was injured at the C5 and have a straight arm but could only lift 45* up.
I recently had the Mod Quad surgery and was telling her about it and the results and it turns out that not only did she have no idea I couldn't raise my arm over my head but none of my brothers and sisters did - 5 total!! I guess I really did compensate well if my whole family had no idea I couldn't go overhead - isn't that hilarious!! I just laughed because the photos I send then now don't have much meaning because they were always under the impression I could lift higher than in the post surgery photos!! Suzy

Suzy
I'm not surprised even my husband did not realize I was so limited... LOL....
I can't believe your poor Mom had two bpi babies. Wow did she have her hands full!

I guess our siblings were tired of the focus on our movements and after a while just did not pay attention.. It like the Brady Bunch shows and the Marsha, Marsha, Marsha syndrome. They clapped hands so what --we clapped and it was a major event... They scratched their noses and so what... We did and WOW it was a Kodak moment... poor sibs.
Kath

Kath, I was just reading here and found your last post. That is so funny. Brandon is the youngeest of four and that is exactly how they feel. WE all get so excited when Brandon does something that the kids do everyday, like tying shoes and zippering pants etc that we went and had a ice cream party. My oldest said,"MOM I don't remember so many ice cream parties when I was little" Oops, it is a good thing that they love their little brother so much and feel the same way me and my hubby do. They are a little older.....18-15-10 and then Brandon is 7 1/2 so they understand a bit, but they do realize he has no limitations and all you have to do is tell him that he cannot do something and he will prove you wrong. I hope they continue to understand. We do have some problems with other family....grandparents etc, but as long as I don't have to deal with it every, I don't care.....I just bite my TONGUE ALOT !!! Gayle mom of Brandon (MR. INVINCIBLE)

Gayle,
Yes, it is much better to bite your tongue. Saying Less is better and at 68 my tongue is still in good shape despite biting it for the least 61 yrs. That was my 2nd best survival skill next to a good sense of humor which I developed at 18, thanks to a great new brother in law at the time.
Hugs,
Carolyn J

It makes me wonder whether all occassions are forgetfullness or lack of understanding. Late last year my mom had a lumpectomy and has been dealing with arm numbness and sensitivity since. So I've been talking more about things with her and she always seems suprised. I think in some cases family knows we have a BPI but I don't think they know everything that goes with it. I know growing up we never discussed anything over than the use of my arm. I don't think my mom or anyone realized that we have numbness, and we don't like to be touched in certain places on our injured arms.

And sometimes I don't think they mean anything by things they say. The other year my husband's cousin came up to me and only me and started talking about one of the "Scary Movies" (they make fun of horror movies through the year), well there is one character who has a small hand that's kinda gross looking. Anyway, I was bothered by the fact she didn't approach anyone else with her story. Just me, I wondered what kind of nerve it took to discuss this with me, and I was quite offended. Well, it turns out it meant nothing, because about a week or so later she was telling everyone about this movie and it had nothing to do with me.

Kids especially don't think about hurting feelings, but we think they mean more by it than they do. Usually I'll make a joke when someone asks an uncomfortable question or something that makes me a little hurt. Humor to me is truly the best medicine.