Im must be the only youth - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 12-13-2003, 05:25 PM
eprmo eprmo is offline
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Default Re:Im must be the only youth

Hi Hank,

Thank you for your thoughts about treating my daughter's H. I know I feel sometimes I am forcing her, but, I also feel, that as her mother sometimes I need to be strong and determined for her. I know, once she is treated and will have a better looking nose, she will appreciate it...It's a long run "thing". She now wears make-up all the time..

I think what upsets her the most is when we take her to doctors for consultataions and they use the word "deformed". She is extremely sensitive and who wouldn't blame her.

Her third laser treatment is next week at John Hopkins with Buddy Cohen, MD...He is wonderful and takes the time to be KIND/SENSITIVE. We also have a plastic surgeon looking at her.there too. Then in Feb. Dr. Waner,,,,So at that point,,, after seeing the different plastic surgeons, we'll decide what to do,,,She too, will have plenty of influence in the decision.

When we were in NY last summer, having consultations, two different doctors initiated big procedures to us. Graphing skin from her forehead, and reconstructing her nose,,This was all discussed in front of her., When we left the ofice,,,she freaked out!!! She said, NO WAY!!!! I respected her feelings, and we will not even consider that approach,,,,much to invasive!!! If sometime in the future she decides she wants it,,I will be there for her....

But for now,,,we'll do these last few appointments and then who knows.....

Hank, thanks again for your thoughts..

Elissa

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  #12  
Old 01-10-2004, 04:01 AM
x0_katie
 
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Default Re:Im must be the only youth

i'm 13, and i have a hemangioma on my left cheek. it's the same thing with me- *but, i had the laser treatment when i was little, so there is no more redness* i can't get rid of the uneven skin, and she can't get rid of her mishapen nose. if you keep pursuing her to get it treated, she probably feels like it bothers you, and you want it to go away. i think you should let her come to you--if she truly is okay with it, then good for her! if she isn't, she'll probably come to you, asking what other things she could have done.

hope this helped! ;D

<33katie
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  #13  
Old 01-10-2004, 06:18 PM
eprmo eprmo is offline
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Default Re:Im must be the only youth

Hi Katie,

My daughter and I have had many talks about what she feels and what I feel. We have talked about her "thinking" it's only for me, these treatments are being done. But, as her mother, it broke my heart, when she said,, "I feel ugly, or I wish I had a normal nose"... On those days, I could die,,wishing there was a Dr. Waner around 14 years ago... On other days, when she "feels" strong,, and she doesn't care,,,, I feel like I AM pushing her...But, when I weigh the "pro's and the con's"..my long term feeling is...Let's just get rid of the problem,,,and then she can deal with all the other "problems", that life has to offer.. Let this one be,,IN THE PAST!!!

I just let her read this post, and she feels "FINE" about it.

Sometimes, it's very hard to know what is right, but as a mother, I go with "MY GUT FEELING"

Some things I say to her to relate to this "pursuing" of treatment is, "BRACES on her teeth".. She didn't want them, and she fought me,,but, I knew she needed them, and when they were taken off, and her teeth and smile looked fantastic, she knew it was worth it..

Hope this helps you, from a mother's perspective!
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  #14  
Old 01-24-2004, 06:14 PM
sardean
 
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Default Re:Im must be the only youth

Hello there it is great to actually find a website with people that have pws. I have 3 one on my back one on my chest and one covering my right arm. I have looked all over the Internet for UK sites but have had no luck. Anyways just wanted to say that you are not the only youths.

Sarah
Age 17
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  #15  
Old 01-26-2004, 06:44 AM
nospoon
 
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Default Re:Im must be the only youth

hi, new here!

I am yet another 20yr old. I have a not very faded hemagiona wrapping around most of my neck and back of the head. How has it affected me? Well, to tell the truth, not all that much that I am aware of. Not in any negative sense. I had a lot of questions and comments from other kids when I was little but they have trickled down to less then five a year now. I am sure people still notice it, its hard to miss, but they rarely comment. I'd like to think that its because of my intense and charming personality ;D But I think it is mainly because I often completely forget that it even exists (slightly different from ignoring it, ignoring something makes people nosey about what you are ignoring) and so people forget it exists too, or perhaps they think of it as some giant red natural tattoo. I don't know. Perhaps I am just lucky in my friends.

Anywhoo, I considered treatment for it for about five seconds before saying no. Its more pain then its worth for me, phsically, timewise, and moneywise. I think of my birthmark, when I think of it at all, as just something else that makes me a true individual.

Elissa, like several others here I think its best if you let your daughter be on this. One of the things about having a birthmark on my neck I found wonderful, was that I can not see it unless I want to. The ONLY reason I ever reminded of it against my will, is when others remind me of it, which doesnít happen often. I think that what might contributing to your daughters discomfort, is that she is always being reminded of it by well meaning (and perhaps not so well meaning) freinds and family. She can't see the makeup.

My advice is try to completely ignore, forget, in fact, about your daughters birthmark. Donít comment on it. Don't draw attention to it, and if she tries to bring it up, play stupid, maybe acknowledge (only when pushed) that she has it, but nothing more. There are more then one ways to make things disappear then lasers and makeup just ask Houdini! ;D I hope this helps!
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  #16  
Old 01-26-2004, 04:16 PM
eprmo eprmo is offline
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Default Re:Im must be the only youth

I am very confused of course what to do with my daughter. I am never sure I am doing the right thing..Although, after her last laser treatment, (YAG)she was so pleased the way it turned out..Of-course, I needed to persuade her to have it.That is why, sometimes I think, I DO NEED TO DO THIS!!!!

I am afraid, she'll be mad at me, if she doesn't like the way it turns out, but then I am afraid, if I don't do this,,secretly, she'll be mad...that I didn't help her, when help is out there.!!!

At 14, she rarely asks me to do much for her, (except give her money),,but, I do feel, if she was totally opposed to the surgery, I would know....

She has told her friends and they are very supportive of her ..they said they would all come and visit afterwards....

so, yes,,I am at a loss how to handle this perfectly,,,,but, I guess,,, she knows in her heart, I love her no matter what,,but, as her mother, I need to do EVERYTHING I can to make her life as easy as possible, and I know she is truly sick of hearing "What's on your nose"....

I hope you understand!

Elissa
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  #17  
Old 01-27-2004, 10:19 PM
eprmo eprmo is offline
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Default Re:Im must be the only youth

Hi, Nospoon.

Im elissa's daughter (big suprise, huh?). really all im saying is, is ur name from the Matrix? "There is no spoon"? Because if it is, verrrrrrrrrry cool. okay bye.

Kidding!

Okay... so about birthmarks.... okay.... right.... i have one on my nose... you probably already know that.... i wear makeup.... (but barely any now that ive had my 3rd laser thingy).... em.... right. this may sound a little odd, but what gender are you? can't rightly tell by ur wording, and im the only girl in my school that likes the matrix... so uh.... yes. So! I guess I'll be going. Remind my mom to tell me when you write back.

Kay then.
*Elissa's* Daugther.
(It would help if I could spell.)
Daughter. There we go.
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  #18  
Old 01-28-2004, 03:28 AM
nospoon
 
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Default Re:Im must be the only youth

Hi Ellisa's daughter,

Yes, the name "no spoon" is from the Martrix. You are very keen to pick up on it so quickly. I loved the first movie and liked the last two but not nearly as much. I am a guy. I chose the name because it really fits what I think about my birthmark. If you actually think about it, the comment in the movie posed as "truth" is not exactly true. In fact the spoon dose exist, but not as a spoon. It is code that the brain interpreates and in fact expreiances as a spoon. Just as our birthmarks do not really exist as a birthmarks. They are (if i understand it correctly) blood vessals extremely close to the skin (ok I know its more complicated then that and that sometimes it is life threating as it was when I was a couple of days old, but after that, the "problem" is merely apperance). Our brains just expeirance them as big red marks on our skin becuase they reflect the red part of spectrum visible to our eyes. That is all a birthmark is. It is a coded spoon. And like Neo and spoon boy did to the spoon, you can "bend" the birthmark any which way you want... by bending your mind sound crazy?

Let me tell you a secret I learned when I was about your age: most people accecpt reality as it is given to them. They accept, as a fact that such and such clothes are "cool", that such and such music is "good", and all kinds of things regardless of what their own senses tell them. Follow so far? Well the secret is, you can define yourself any way you like in any given person's reality. Just like fashion designer define the "cool" clothes in their "reality", just by merely being a fashion designer that makes cool clothes, you can define yourself in their reality. You can be "the girl with a big ugly birthmark on her nose" (been there, done that, not fun! :'( ), or "That really interesting chick in math class... oh yeah I noticed that red spot on her nose too, wonder what it is? ah who cares? She can do quadratic equations like nobody's bussiness!" or anything in between. It all depends on you and how you present yourself. From what your mom says, it sounds like you have some good friends who already see you the second way. Stick with them. People who dwell on your birthmark are not worth hanging out with... Oh my, I have gone on longer then I expected. I have homework to finish! Hope this helped! And good luck with the laser stuff! Remember, you get what you see, and if you dont see a birthmark, no birthmark you get! ;D

Trust me, as a birthmarked, braced (braces for eight years), ADD, massive underbit (not so much after two jaw surgerys), kind of kid growing up, I know what I am talking about!

Rob.
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  #19  
Old 03-07-2004, 12:14 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:Im must be the only youth

HI folks~
i was reading all your email about experiences w/ your birthmarks!! you folks are awesome and such great support to each other!!

I am helping a lady do some research on the effects of cut or blows to pws areas . She is trying to present information to coaches at a national conference. Can anyone here share any experiences such as:
If you had a sports injury that caused more damage to your pws?
If you have an injury that caused bleeding? If so, how did your body handle it? How did the folks around you handle it? Did the bleeding seem to be "the normal' or did it take along time for the bleeding to stop.??

Plse email me direct if you can. My em is msearp9@jam.rr.com. I will fwd your input to Gail or put u in touch w/ her promptly! thanks alot~

Lisa
Mississippi
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  #20  
Old 11-12-2004, 09:27 PM
Cuety
 
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Default Re:Im must be the only youth

Hey everyone, I am glan I started this conversation.
Hey elissa's mom, elissa should be thankful to have a mom like you that would do that for her, I wish my mother was like that when I was younger. I had to fight for myself and force her to give me a ride to Boston for advice. I guess things work out for the best though because I am determined.
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