Reality check

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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stanleyars
Posts: 11
Joined: Wed Nov 15, 2006 10:37 pm
Injury Description, Date, extent, surgical intervention etc: I have a LOBPI. No surgeries were performed as the injury was not well known at that time. In 2007 I found this website and was able to put a name with my injury. I debate having surgeries but have never seen a doctor for my injury. The secondary strain on my body has finallly caught up with me. I am only 26 and can't explain the amount of pain I feel in my back or shoulder to none BPI people. They do not understand the physical strain. I was blessed with a beautiful baby boy 10 months ago.....but he has become to reason for much of my pain. I will take pain any day then give up motherhood!

Reality check

Post by stanleyars »

I have not posted for a long time, let alone checked the message board. However, I signed on tonight as I just had my first reality check on over using my good arm. I have a ganglion cyst on my good wrist due to over use and unfortunately is one associated with huge amounts of pain. Thank you once again to my doctor who delivered me. Right now the doctor does not want to do anything thing as surgery will only cause my wrist muscles to be weaker and a greater potential for more cysts. I am taking it easy and wearing a wrist splint to limit movement.

I finally realized that I can not do everything. My husband has had to help me a lot this last week when lifting things as well as I had to talk to co-workers and explain that I can no longer do certain jobs. I cried and cried the first night. All I could think off was having two "gimp" arms (as one of my co-workers puts it). It also does not help that my co-worker is calling me names. I am 24 yeas old but name calling still hurts.

After reading many of the new posts, I think I have come to realize that prior to this week my self-esteem was okay because I would do everything to prove I was normal, and now my self-esteem is at an all time low. Yet I should be proud that I have finally acknowledged the fact that I can't do everything. I just wish I would have understood the magnitude of problems my bull headedness would create later in life.

Sorry I just needed to vent, I am really feeling much better now that I have typed this.
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Reality check

Post by hope16_05 »

Hi Amanda!
Glad to see you back! I was just curious if you have/could get a second opinion of your ganglion cyst on your good wrist.
I had one that was very painful for me and at first we tried injecting it with something that could have made it go away and when that didnt work we did surgery to remove it. Best choice ever!!! I think it comes back ocassionally but goes away now on its own. But the majority of the pain it caused is gone and I have no functional deficits! My strength is just the same or better than before! I was splinted for a week and then I was good to go!
I know how much those cysts hurt and I hope you can get some one to do something to get rid of it!

Good luck!
Hugs,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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: Reality check

Post by Carolyn J »

Hello Amanda,
WELCOME back. Venting here IS a very healthy thing to do.
Accepting ourselves and our need for assistence at times is the 1st step to healing ourselves. I've thought about you many times. Please stay connected with us we are here for you. I 2nd Amy's suggestion of getting another opinon about your cyst.Have you ever consulted a BPI Specialist?...might be time to do that too.

You have alot of company in the "Stubborn.."I can do it myself and better than others" Club.

((((HUGS))))
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
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: Reality check

Post by Kath »

Amanda
I'm glad you feel comfortable here... We all understand our Super-person attitude. Many of us know the high price we pay for trying to prove something to ourselves.

Your arm should never define you! You will have to take a stand with this coworker calling you names.
That is NEVER acceptable under any circumstance!
Most of the time people just whispered when I was working but no one ever was rude enough to make cruel remarks.
That was more a high school, grammar school problem for me.
You need to take this person aside and tell them you don't appreciate there remarks and will no longer allow them to mock you. You can say it nicely but firmly.
The tongue has no bones but the ability to break a mans back and spirit. Words hurt and it's up to you to teach people how to treat you.
Only you can stop them from making you feel bad about you.
These cruel remarks are not really about you but this persons lack of esteem.

I also have a cyst on my left unaffected wrist and my doctor said he would not take a chance with surgery on it.
Some how most of the pain faded and only once in awhile do I have a problem with it.

Your self-esteem should not depend on your ability to prove yourself to others. I learned this, the hard way, very late in life.
I was super-person always trying to prove, to my self and others, I could do anything anyone else could do.
I didn't realize, that others knew their limitations and made no apology for them.
You are a whole person with many abilities and not everyone can do everything. It seems to be hard for us to stop apologizing for things we can't do.
The key, for us, is learning to accept ourselves for who we are and realizing that everyone has limitations not just us.

Please feel free to vent all you want because we all understand or have been where you are now.

I don't know if you have a bpi specialist if you don't please check the Resource Directory.
It is best to see an OBPI specialists who treats both children and adults.
Maybe some PT could help to improve your function. Improving our function does help our unaffected arms. You many need some PT/exercises to help you with both arms.

Over the past several years I have had PT and Chiropractic care and this has relieved some of the overused problems I have with my unaffected arm.

Feel better
Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
stanleyars
Posts: 11
Joined: Wed Nov 15, 2006 10:37 pm
Injury Description, Date, extent, surgical intervention etc: I have a LOBPI. No surgeries were performed as the injury was not well known at that time. In 2007 I found this website and was able to put a name with my injury. I debate having surgeries but have never seen a doctor for my injury. The secondary strain on my body has finallly caught up with me. I am only 26 and can't explain the amount of pain I feel in my back or shoulder to none BPI people. They do not understand the physical strain. I was blessed with a beautiful baby boy 10 months ago.....but he has become to reason for much of my pain. I will take pain any day then give up motherhood!

Re: Reality check

Post by stanleyars »

The cyst has gone away for the time being. I was actually seeing a doctor through work for the cyst since it occurred at work. I had to do physical prior to being hired. As of right now my Employee Health staff at work, are saying it is their responsibility as they approved me to do the work that caused the cyst. I have a wrist splint like those for carpal tunnel, that I wear anytime I am going to be pushing, pulling, or lifting anything that is heavier. However after discussion with my coworkers we have worked out a plan to wear I will not have to lift multiple heavy boxes now.

There is one BPI Specialist that I know of in Kansas Cit, but they don't see adults. As far as going to 1 of Dr. Nath's my issues comes with traveling expenses. My husband and I can not afford the expense.

I feel like my life is a roller coaster at times. There may be a point in life where I am doing good, my arm or back is not bothering me, and then there is a point when it is painful and it is all I think about. When I get to the bottom of the hill and feel there is no way back up I come to the board and get a boost that I am not alone.

I am going to try and do a better job staying in contact in the boards. Also I am excited that camp is going to be in Florida the next time. Maybe I can make that one as I have family in Florida, and two years to save money.

Thanks everyone for all your comments they truly do help!

-Amanda
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brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Reality check

Post by brandonsmom »

Check out Dr. Nath's WEBSITE !!! DR. Nath does satelitte clinics that might be closer to you. I know we are going to the Chicago one on the 16 and 17 of november !! On the events page there is a thread for these clinics, I know there were others listed. That should save you some expense, even if you have to drive a few hours, it is worth it!!!!

GAyle
mom of Brandon 9 ROBPI !!
Sammy22
Posts: 6
Joined: Wed Oct 17, 2007 12:50 am

Re: Reality check

Post by Sammy22 »

Hi!

My name is Sam and I'm 23 Living in Australia. I also suffered BPI at birth. I have never really had any treaments, help ect until just recently as I have started to experience pain and discomfort in my right shoulder. I'm not very well informed on my injury and issues realating to it so I'm looking for people to talk with who can share what they know and have learnt.
Please contact me
Hope to talk soon
Sammy
twatson603

Re: Reality check

Post by twatson603 »

I see there are a couple of people with a cyst on their good arm, is that a common problem with brachial plexus?
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Reality check

Post by hope16_05 »

thats a very good question, I guess I never thought about it. Do you also have a cyst on your good arm Trevor?
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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