Vascular Birthmarks Foundation Forum

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-   -   my story (http://birthmark.org/board/showthread.php?t=3627)

Sarah Ebling 12-17-2009 02:23 PM

my story
 
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I am new to this site. I have actually been on it in the past looking for doctors but was never aware there was a post forum to talk with other individuals living with vascular birthmarks. I am 23 years old and I was born with a vascular malformation that covers the whole right side of my cheek, my right arm and hand. My right arm is physically disabled due to bone loss caused from the malformation. I have broken my wrist 8 times and I'm not going to lie I am still counting for the days to come because the breaks keep coming more frequently. My parents took me all over the place to many doctors growing up, and none of the many many surgeries I had ever made a difference. I went to a doctor during my high school years, not sure the rules on naming names so I won't. He was the first doctor that gave me hope in thinking I may get rid of it at least on my face. I had several surgeries that lead up to my first major surgery that then lead to a year of emotional and physical pain of recovery, to say the least the mass was reduced around my nose. However, I guess my malformation is too extensive and risk taking to do much more so I have come to terms with the fact that I may just be unique the rest of my life. So now that I am going into my last semester of college and about to graduate even if I were to find another doctor willing, I wouldn't have the time, money or medical insurance to deal with it, because yay me I get to be a grown up now haha. As for life in general, growing up looking different has not been easy and defiantly difficult in the whole social world with the looks from people and oh so many questions. Growing up my Mom would always answer to the questions and as I got older I felt more responsible being able to answer them on my own but then started feeling more of the hurt and frustration dealing with the insecurities. Eventually I kinda became bitter about it and would just ignore people or avoid the conversation or just walk away. The past few years since I have been on my own and in college I've some how managed to find some inspiring people to call my friends. Having them in my life has brought me a lot of calm and peace and more at ease with accepting myself for who I am. Life is defiantly a struggle but I have a much better outlook on life and my insecurities have defiantly found its way down on my list of things that affect me in life. I can say tho that there are those days that I come home and feel alone. But I have found myself to be lucky and thankful for my mom and the few close friends that I have who support me and love me for me. Sometimes I still wish I could be able to have surgeries to fix it but I just have to keep on living on and not focus on that. Anyway I was really touched to read so many other stories that people have written and knowing that I am not the only one going through this experience.

missy 12-18-2009 01:03 AM

I love the way you laugh about having to be a grown up now! LOL It DOES suck. Your mom and your circle of friends seem like a nice group to have around.

Welcome and come back often!

Missy


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