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.
Family forgetfulness
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: Family forgetfulness
Kamren, I posted re pain on the Traumatic site after seeing a news item this A.M.
http://ubpn.org/messageboard/thread ... read=11918
http://ubpn.org/messageboard/thread ... read=11918
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Family forgetfulness
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
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
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Family forgetfulness
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
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
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Family forgetfulness
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
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 robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: Family forgetfulness
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)
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Family forgetfulness
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
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
Carolyn J
Adult LOBPI
Adult LOBPI
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veggiebug
- Posts: 257
- Joined: Wed Mar 03, 2004 8:47 pm
- Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention. - Location: Williamsport PA
Re: Family forgetfulness
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.
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.