Hi everyone!
Let me start by saying that finding this page and reading everyone's struggles and accomplishments has been very healing for me. I never knew that anyone else even knew what BPI was, let alone that there are others like me out there!
I have a lobpi (see, I'm catching on!) and I have no idea how severe it is, although based on others descriptions, I think mine must be pretty bad. I'm 30 years old, and seeing some of the "aging" problems that many of you have mentioned. I think it is time to try to address this again, but frustration from previous attempts has held me back.
Can anyone give me some advice on how to approach this? My medical history is with me, but it was all performed at Naval hospitals, which are more concerned about covering their you-know-whats than actually helping. All I have ever heard is that it is too late for help. Is this true? Where do you start looking for help? My experience with doctors has been frightening at best - when I was born, the doctors told my Mom to amputate the arm because it would never be of any use to me, and it only gets worse from there. I know doctors are quite often wrong, but how do you get past all the red tape that insurance slings at you?
I'm ready to start the fight again, so any tips or help that anyone can give me would be SO appreciated... thanks, and I look forward to getting to know everyone!
Shelly
Hello to all; need your guidance!
-
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: Hello to all; need your guidance!
Shelly
Welcome to the Message Boards.
I am so happy you found us.
This will be an interesting journey and an educational one for you.
I suggest you read as much of the Awareness material as possible.
Read about prevention, infant information and then you can begin to apply some of the materials to your own experience.
Since you are only 30 you may be able to get your birthing records and all other medical records.
You are entitled to see them by law.
I was 60 when I found UBPN and have been unable to get a hold of my medical records.
When I was young I was not allowed to see my medical records.
The doctors were able to keep them from us.
I have had many tests since I found UBPN but I am the one who insisted on it.
My PCP does not have experience with OBPI but she has been supportive and cooperative when it comes to my needs for PT and medical testing.
That is a first for me but I had to open the conversation.
I did not begin to seek testing until I was educated about OBPI.
Because, I did not want to be brushed off with made up answers.
I had a lifetime time of them from assorted doctors.
My childhood family doctor educated me about my arm and was great.
The average doctor does not have answers for you because:
There are no long range studies on this injury.
They are not taught about long term life long impact of OBPI.
So sometimes ego gets in the way of good advice.
Many doctors still believe "it's only and arm injury"
OK... this is long enough.
No question is foolish so ask away that is how many of us learned from each other.
Kath (robpi/adult 66)
Welcome to the Message Boards.
I am so happy you found us.
This will be an interesting journey and an educational one for you.
I suggest you read as much of the Awareness material as possible.
Read about prevention, infant information and then you can begin to apply some of the materials to your own experience.
Since you are only 30 you may be able to get your birthing records and all other medical records.
You are entitled to see them by law.
I was 60 when I found UBPN and have been unable to get a hold of my medical records.
When I was young I was not allowed to see my medical records.
The doctors were able to keep them from us.
I have had many tests since I found UBPN but I am the one who insisted on it.
My PCP does not have experience with OBPI but she has been supportive and cooperative when it comes to my needs for PT and medical testing.
That is a first for me but I had to open the conversation.
I did not begin to seek testing until I was educated about OBPI.
Because, I did not want to be brushed off with made up answers.
I had a lifetime time of them from assorted doctors.
My childhood family doctor educated me about my arm and was great.
The average doctor does not have answers for you because:
There are no long range studies on this injury.
They are not taught about long term life long impact of OBPI.
So sometimes ego gets in the way of good advice.
Many doctors still believe "it's only and arm injury"
OK... this is long enough.
No question is foolish so ask away that is how many of us learned from each other.
Kath (robpi/adult 66)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Hello to all; need your guidance!
Shelly:
I'll extend my welcome also. You've found a good place for information, advice, and good friends. Start by looking at the medical resources information on this web site and then locate a BPI specialist. You deserve answers from qualified experts.
John P. (ROBPI)
I'll extend my welcome also. You've found a good place for information, advice, and good friends. Start by looking at the medical resources information on this web site and then locate a BPI specialist. You deserve answers from qualified experts.
John P. (ROBPI)
Re: Hello to all; need your guidance!
I, too just found out about this Network. I am 40 and this injury is becoming unbeaable.I need to find out what options are there for adults?