Re: hello
Posted: Sun Jul 03, 2011 9:33 am
Dear Erdrix-
I am 43 and LOPBI.
I had the "L'Episcopo Procedure" when I was 6 years old and my musculature/limitations sound similar to yours.
A couple of ideas for you.......
Most importantly, your medical information can and must be released to you at your request. All you need to know is the name/address of the hospital. Contact their "medical records" department and request "all records pertaining to my admission and surgery on/around (insert date) for the purposes of continuing medical care." It may take awhile as it may be so long ago it is archived and there may be a copy fee/mailing fee. I did this when I was 24-25 years old and in medical school and learning about my own "different" body as my parents were not comfortable talking about it with me. If the hospital will not release to you directly, you just need to ask your doctor to sign and it will come to him/her.
Believe what everyone here is telling you about taking care of your non-affected side. I was experiencing that before learning about UPBN ~ 6 months ago but not realizing how significant it was. I am hearing from older and wiser people here that this is of the utmost importance and no longer something to shrug off.
My latest mantra is that "this part of me deserves attention too"...something I did not grow up knowing b/c of the emotions it (still) sparks with my mother. I have been involved in yoga (modified as needed) for the past 6-7 years and it has made a lot of difference on many levels. Visually, my muscle bulk is more equal than it has ever been. Though I still have the contractures (elbow that will not straighten) and loss of mobility (cannot turn wrist palm up nor raise arm above shoulder height. I grew up learning to basically ignore this very significant part of me b/c it kept peace in my home. While this issue does not have to define all of who you are, the curiosity and "itch" that it creates can be unbearable until you get correct information and make a plan for yourself. You deserve this.
I am 43 and LOPBI.
I had the "L'Episcopo Procedure" when I was 6 years old and my musculature/limitations sound similar to yours.
A couple of ideas for you.......
Most importantly, your medical information can and must be released to you at your request. All you need to know is the name/address of the hospital. Contact their "medical records" department and request "all records pertaining to my admission and surgery on/around (insert date) for the purposes of continuing medical care." It may take awhile as it may be so long ago it is archived and there may be a copy fee/mailing fee. I did this when I was 24-25 years old and in medical school and learning about my own "different" body as my parents were not comfortable talking about it with me. If the hospital will not release to you directly, you just need to ask your doctor to sign and it will come to him/her.
Believe what everyone here is telling you about taking care of your non-affected side. I was experiencing that before learning about UPBN ~ 6 months ago but not realizing how significant it was. I am hearing from older and wiser people here that this is of the utmost importance and no longer something to shrug off.
My latest mantra is that "this part of me deserves attention too"...something I did not grow up knowing b/c of the emotions it (still) sparks with my mother. I have been involved in yoga (modified as needed) for the past 6-7 years and it has made a lot of difference on many levels. Visually, my muscle bulk is more equal than it has ever been. Though I still have the contractures (elbow that will not straighten) and loss of mobility (cannot turn wrist palm up nor raise arm above shoulder height. I grew up learning to basically ignore this very significant part of me b/c it kept peace in my home. While this issue does not have to define all of who you are, the curiosity and "itch" that it creates can be unbearable until you get correct information and make a plan for yourself. You deserve this.