I read alot of messages and I see a common theme. As if learning to live with this injury for years without answers or help for that matter, we have to learn to tolerate "Pain". Pain in the affected arm or pain in the un-affected arm due to overuse. Pain from the inconsideration and simple cold heartedness of stupid people. Or the pain in the a** you get from DR.s and other "Professionals" we seek answers or help from.
I am LOBPI, 39 yr.s old and a surveyor. I don't do desk work very well, so I choose to work where I can stay in the field. Also, just to help you understand where I'm going with this, I coach Football and my son's USSSA Baseball team.
I woke-up this morning, both arms were hurting pretty bad, so I called in "sick" to work. This caused way more trouble than I thought it would, seems my boss thinks that since I was born with this that pain in my arms is not a valid "sick' reason. So I took my a** chewin' and stayed home anyway. That, on top of the fact, the people who's kids are on my son's ball
team like to call me "one-arm bandit", kinda erk's me...just a little bit.
As I've said, I'm 39 and you would think that the insults (direct or indirect) would sorta be old hat at this point.
Pain....Makes you wonder how tough we actually are.
Wondering...
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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: Wondering...
Steve
I hear you LOUD and CLEAR... sometimes life just smacks us in the FACE.
Even people who should be more sensitive, and are PC beyond the normal, will say and do things that just put us over the edge.
I think it is because we appear to be so well balanced and together they think it is OK to say what ever they want...
These are the same people who stub their toes or sprain their wrists and are high drama.
They walk around looking for sympathy, understanding and support for a hang nail.
Usually they are chronic whiners if something goes wrong with them.
Boy, did you hit a nerve with that one... LOL... just went through something similar and boy did I want to smash someone...
But, I kept my cool and reverted to the smile so they would not know they "got to me".
We all deserve Academy Awards for putting on a happy face, when we really want to loose our cool...
Glad you came to vent.
Now get those rotator cuffs examined.
I had PT and hot tub for therapy when both rotator cuffs were acting up.
Your boss needs some sensitivity training.
Don't throw anything at me but does he know you are disabled?
Did he ever hear of the People with Disabilities Act?
Hope the pain goes away quickly. Keep us posted
Kath
I hear you LOUD and CLEAR... sometimes life just smacks us in the FACE.
Even people who should be more sensitive, and are PC beyond the normal, will say and do things that just put us over the edge.
I think it is because we appear to be so well balanced and together they think it is OK to say what ever they want...
These are the same people who stub their toes or sprain their wrists and are high drama.
They walk around looking for sympathy, understanding and support for a hang nail.
Usually they are chronic whiners if something goes wrong with them.
Boy, did you hit a nerve with that one... LOL... just went through something similar and boy did I want to smash someone...
But, I kept my cool and reverted to the smile so they would not know they "got to me".
We all deserve Academy Awards for putting on a happy face, when we really want to loose our cool...
Glad you came to vent.
Now get those rotator cuffs examined.
I had PT and hot tub for therapy when both rotator cuffs were acting up.
Your boss needs some sensitivity training.
Don't throw anything at me but does he know you are disabled?
Did he ever hear of the People with Disabilities Act?
Hope the pain goes away quickly. Keep us posted
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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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: Wondering...
Steve,
I agree with Kath 100% PLUS, keep coming back here to vent,OK?.It DOES help alot.We sure do understand and felt the same things and feelings. Here, also,is no dumb question, & that helps too.
Carolyn J
LOBPI, age 67 & proud of it!
I agree with Kath 100% PLUS, keep coming back here to vent,OK?.It DOES help alot.We sure do understand and felt the same things and feelings. Here, also,is no dumb question, & that helps too.
Carolyn J
LOBPI, age 67 & proud of it!
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Wondering...
Hi Steve,
I'm wodering, too. This is the third time I'm going to try to post this. I'm wondering why neither one of the first two posted.
I don't have anything to add to what's been said already. I just want you to know that there are others here who understand.
Joanie, 56 years, LOBPI
I'm wodering, too. This is the third time I'm going to try to post this. I'm wondering why neither one of the first two posted.
I don't have anything to add to what's been said already. I just want you to know that there are others here who understand.
Joanie, 56 years, LOBPI
Re: Wondering...
OK, I must be a freak because I was born lobpi and am now 39 and I have never ever had pain in either arm. Where is the pain coming from in the affected arm? I don't get it.
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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: Wondering...
Suzy
You are a very lucky girl. As you can see more people report pain than those like you who do not have pain.
I don't know the extent of your injury so perhaps yours is milder then those who experience the pain issues and the overuse.
I have all my nerves involved and my biceps do not function so my arm is really little more than a decoration.... I can use my hand but it is weak... so for all intense and purpose I have been one armed for 65 years... that is a lot of wear and compensation....
I was not suffering in my thirties either. I had back problems all my life and never connected them to my arm nor did my doctors. After years of repetitive tasks, lifting three kids all the time and functioning at an extremely high level my body refused to give up the pain and heal. Over use and severe pain in the so called unaffected arm did not smack me in the face until I was in my 50's and my unaffected arm did not heal anymore and my back and neck remained painful...
Each injury is so different and heals in such a different way that it is impossible to compare...
I hope you always remain pain free...
Kath
You are a very lucky girl. As you can see more people report pain than those like you who do not have pain.
I don't know the extent of your injury so perhaps yours is milder then those who experience the pain issues and the overuse.
I have all my nerves involved and my biceps do not function so my arm is really little more than a decoration.... I can use my hand but it is weak... so for all intense and purpose I have been one armed for 65 years... that is a lot of wear and compensation....
I was not suffering in my thirties either. I had back problems all my life and never connected them to my arm nor did my doctors. After years of repetitive tasks, lifting three kids all the time and functioning at an extremely high level my body refused to give up the pain and heal. Over use and severe pain in the so called unaffected arm did not smack me in the face until I was in my 50's and my unaffected arm did not heal anymore and my back and neck remained painful...
Each injury is so different and heals in such a different way that it is impossible to compare...
I hope you always remain pain free...
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Wondering...
I didn't experience any pain until I hit puberty. The pain itself is sorta hard to describe, it's like arthritis or bursitis but with no specific bone or joint to pin-point. as I've said for a few years on this message board, I'm LOBPI but to make things a little more complicated, I'm numb from my elbow to my finger tips and have been for as long as I can remember.
The pain itself can only be described as a "nerve pain", to answer your question.
The pain itself can only be described as a "nerve pain", to answer your question.
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Wondering...
Hey Steve! When I first found these boards about 2 years ago, and was searching around, I saw your name and where you were from. (I think that was you). I hadnt met anyone with a bpi and wanted to contact you. I understand youre obpi? My son is 12 and TBPI, from a 4 wheeler accident in 2003.
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Tanner's Mom
- Posts: 288
- Joined: Sun Oct 03, 2004 12:29 pm
Re: Wondering...
Espiper & all,
Hmmmm....what is the mystery in all of this? Do you guys have any thoughts or ideas why many adults with obpi experience pain and secondary issues, while some have little or none? I would love to know your thoughts. It is a hard one to figure out.
Espiper...if you don't mind sharing, do you feel you have a mild, moderate or severe injury? What makes you categorize it as such? Anything you can think of that might have contributed to your injury involving no pain in adulthood? Anything you do or don't do?
To those with pain...
Do or did you use your affected/injured arm much in daily living?
Did you compensate significantly with the unaffected arm over the years?
Did you play sports, work hard, lift things, etc., in a way that you think made things worse over the years?
I would love to know your experiences and thoughts. There has to be a few specific reasons why some are experiencing pain and others are not. What do you think it is??? Or do you think it is merely a matter of time and aging that will bring pain for most adults with BPI?
Thanks so much!
Lisa
Hmmmm....what is the mystery in all of this? Do you guys have any thoughts or ideas why many adults with obpi experience pain and secondary issues, while some have little or none? I would love to know your thoughts. It is a hard one to figure out.
Espiper...if you don't mind sharing, do you feel you have a mild, moderate or severe injury? What makes you categorize it as such? Anything you can think of that might have contributed to your injury involving no pain in adulthood? Anything you do or don't do?
To those with pain...
Do or did you use your affected/injured arm much in daily living?
Did you compensate significantly with the unaffected arm over the years?
Did you play sports, work hard, lift things, etc., in a way that you think made things worse over the years?
I would love to know your experiences and thoughts. There has to be a few specific reasons why some are experiencing pain and others are not. What do you think it is??? Or do you think it is merely a matter of time and aging that will bring pain for most adults with BPI?
Thanks so much!
Lisa
Re: Wondering...
Like Kath, I didn't experience pain in my 20s and 30s either, except when I overdid something and had back pain as a result (now I know it probably was compensation issues that led to that).
But in my 40s, I started to experience two kinds of pain -- shooting pain up and down my bpi arm and hand, which came on when I moved in certain ways. I esp. got it getting in and out of the car for some reason. And arthritis pain that gradually got worse each year, leading me to take medication for it in my mid 40s. Also in the late 40s, the pain began in the unaffected arm and hand, which the doctors attributed to overuse. As my primary care physician explained it when I was 45 -- 'this arm has done double duty your whole life, so while you are only 45, it is as if this arm and hand is 90'.
Nancy Birk
UBPN President
LOBPI, 52 years
But in my 40s, I started to experience two kinds of pain -- shooting pain up and down my bpi arm and hand, which came on when I moved in certain ways. I esp. got it getting in and out of the car for some reason. And arthritis pain that gradually got worse each year, leading me to take medication for it in my mid 40s. Also in the late 40s, the pain began in the unaffected arm and hand, which the doctors attributed to overuse. As my primary care physician explained it when I was 45 -- 'this arm has done double duty your whole life, so while you are only 45, it is as if this arm and hand is 90'.
Nancy Birk
UBPN President
LOBPI, 52 years