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Re: [Neurofibromatosis] Swim wear   Message List  
Reply | Forward Message #5115 of 6809 |
Re: Swim wear

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I think we ALL get depressed about having this disorder. Some days
are worse than others....some real bad, some very good. We have to
remember to look around and see it is not a perfect world with
perfect people. I see people all the time with disfigurements, some
severe and others who have things that alter their appearance. In
general, I really don't think people care about the NF and it is us
who are so self-conscious. I just returned from St. Thomas and ST.
John and although I do not wear a bikini (also have many of the tiny
bumps esp. on back and torso) I have some nice suits that don't look
like Grandmas (c: But, I did not feel like people were staring at
all. People look at other people...we all do. I have never had a
negative occurance from having NF. Cleo....don't jump the gun yet
about your future. It is not worth dwelling on and creating senarios
that may never happen. When I start to feel down, I quit thinking
about the bad and think of ALL GOOD. I think of the beauty in the
world and things that make me happy. We all have a hard time
accepting this. I myself think it is a cruel disorder and one day
will know the reason I have had to deal with it. Cleo...you are a
STRONG person and a LOVELY lady....always remember that. Taking the
time to love others and the fact you have special people in your life
tells me you do love yourself. Sometimes we just need to spout and
have someone listen that can relate. We do not always know how NF
will progress....I too have noticed new rash-like growths
developing. I have many removed by laser about once a year and it
makes a big difference. But, what I was saying is that there is
probably a time when it stops. It did for my father. I just pray
all the time that things do not get out of hand. Well, I kind of
rambled on! Still did not say all I wanted! All in all, when
feeling down it also helps do do something for yourself.....buy
something, take a nice soak in the tub, dress-up in your "good"
clothes, or focus on another person and do something for them!
Okay....I'm done!






Fri Nov 11, 2005 12:39 am

sugarrita1
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Message #5115 of 6809 |
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Hi Paul, How about swimming trunks and a tee shirt.... Jenny ... From: polarman47 To: neurofibromatosis2@yahoogroups.com Sent: Wednesday, November 09, 2005...
Genevieve Seymour
cleo5899
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Nov 10, 2005
12:24 am

hi PAUL i to have NF1 have lots of the bumps on chest back ect but im to the point i dont care if it will bother some one or not i...
carolinacpnter@...
photoguybill
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Nov 10, 2005
2:01 am

You have a great attitude carolinacpnter, I have always been depressed. I blame it on my NF. Can anyone, all of you who love yourselves please tell me how to...
Genevieve Seymour
cleo5899
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Nov 10, 2005
3:01 am

... I think we ALL get depressed about having this disorder. Some days are worse than others....some real bad, some very good. We have to remember to look...
Rita
sugarrita1
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Nov 11, 2005
12:40 am

I too, have lots of little bumps on my back and torso, and hardly any external ones anywhere else. not sure why that is... I worry about it more too, I think,...
littlenloud
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Nov 12, 2005
3:28 am
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