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#19328 - 06/20/03 02:02 AM Re: worried about the future.....
Margaret Offline
Member

Registered: 10/14/02
Posts: 42
Loc: Virginia
Thanks Becky...
I'm 16 and I've had some of the same worries. I have another question. Wouldn't the dead skin start to annoy the guy after a while, espesially in bed?

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#19329 - 06/21/03 04:35 AM Re: worried about the future.....
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I am not a woman, and I don't have tips about dating ... but a few points, especially for young people. Becky, whatever happens in your social life in the future, you still need to make a living!!!!!!And the best chance, not guarantee, of making a good living would be going to college and studying a marketable major. I lost track of that fact, and it's been an uphill climb ever since.

Academically, I excelled in high school. It wasn't until college that the social problems of having ich hit me full force. To compensate, I drank and started to smoke grass when I never even knew what grass was in high school!!! Eventually, I quit grass, and graduated, but I wasted a lot of time, and did not get a MARKETABLE degree. I came out to Hawaii in my late 20s, and had to go back to school in my mid 30s to get a business degree. And I am still struggling with debt from years of spending more than I could afford from bad jobs. Moral of the story??? Can't let the social pressure of ich let you wallow in misery and self-pity, as I did, and lose sight of the fact that you still need money to live!

Margaret, one way to deal with the dead skins on the bed is the color of your bedsheets. For me with severe vulgaris I use white sheets, and try to change them often.

Good luck to you, Kiddos!!!
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#19330 - 06/22/03 01:35 PM Re: worried about the future.....
Anonymous
Unregistered


Margaret,
I wish I could answer that for you. When I first met my wife I was terrified of her seeing the dead skin in the bed or shower or anywhere I had been sitting. To this day I still ask her occasionally how she can stand it or if it bothers her. She just rolls her eyes and shakes her head and makes me feel like an idiot for even asking. I guess when you find someone who loves you for who you are none of that stuff will matter.
Keith.

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#19331 - 06/22/03 03:34 PM Re: worried about the future.....
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I asked my husband about how he can stand all the skin flakies around in the bed sheets, etc. He looked at me with his, "Honey I love you but you're being an idiot," expression and then said "Chandra, it's not like you can control it, and in the grand scheme of things, you are more than worth putting up with a few dead skin flakes in the bed. Get over it, because I have." Ooooh, how I love that man. What really used to embarass me was when I'd be cooking a meal and some flakies would fall in to whatever I was making (come on, admit it, I know it's happened to everyone with LI and other types of Ichthyosis) and he just laughed and said "No worries, it's just extra protein."

It is just another example of creating a problem another person might have without giving the other person the chance to come up with a reaction on their own. We worry too much!!!!
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#19332 - 06/23/03 02:58 PM Re: worried about the future.....
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Dear all

I would like to add something to what Promiseland mentioned. There was a time when I thought I would never meet a guy who would put up with the condition. At some point I realized that whether you have Ichthyosis (or any other special condition) or not, you will never know or have a guarantee that you will meet someone and get married. It took me a while to accept this and to sort of 'let go'. It is more important to find out what you like to do in life, what you are good at etc. than to think 'If I can't do this or that in life I will be unhappy for ever'. I hope you can understand what I am trying to say. I tried to decide to be happy, whether I get married or not.

Regarding the flakes in bed (and all the other places): My husband does not mind at all. As e.g. Chandra described: He thinks my worries are cute and not necessary. He says that it is great that I am every where at once and that I am around even if I am not at home...:-) Additionally: We only have light color sheets etc. as well. We change them often and in between simply shake them out.

All the best,
Sofie

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#19333 - 06/23/03 04:10 PM Re: worried about the future.....
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Becky,

Sorry I am so late in replying to your post...Your unique personality is what counts most....I am afraid we live in a world that forgets that very important characteristic, and we are all obsessed by enternal looks and youth....

I am married now, but the closest male friends I had as a teenager, loved being around me, for my cheeky sense of humor, and because of our common interests and special bonds...

Don't worry you only need to wait for that special connection, that has nothing to do with your skin condition....

I only worry about my husband's acceptance of me on such rare occasions, when I have had bad experiences at University, other than that, I don't feel like I even have a skin condition most of the time, where my husband is concerned....

I think that is the most rewarding/special aspect about finding your mate, it is at that time, that I believe many of us truly feel comfortable with ourselves, and allow our confidence to shine through...

As Laura very succinctly told us about 1 year ago....that people who have ichthyosis are able to weed out the frogs from the princes....because the really special ones will want to be with us, and any others, are not worth knowing anyway....

SO BE VERY PATIENT, AND JUST ENJOY YOUR YOUTH...YOU WILL BE RICHLY REWARDED....

And Sophie, I laughed at what you said about being glad to have the flakes around, because part of us are still there....That is so true, and funny....I still have a very close male friend, who when I visit him, we always hug goodbye, and I automatically, brush his shoulder down, and he tells me off, and says "he feels like I am still there, if I leave the skin on his shoulder"....

As for our sheets, I don't worry about the colours, just buy the ones I love...I just keep a shovel and broom by my bed, and sweep it out every morning...And make sure I brush out both sides of the bed....Mine more than his most of the time....You can all guess what the 'Most' means....or should I say 'least'....

Lots of Love
Pauline.

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#19334 - 08/06/03 03:04 PM Re: worried about the future.....
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
Hi Becky,
I just saw your post too and just wanted to say...I fell in love with my daughter Jordan's Dad and he has Ichthyosis(I don't )...though we are no longer together (which had nothing to do with his skin condition, we just didn't get along) I fell in love with the person he is, not what he looked like physically. Physical may attract some but it doesn't keep them and some people stay together forever while some people grow apart. Please don't ever feel like you will never find someone...just be patient and always be true to yourself.

[This message has been edited by Robin (edited August 06, 2003).]

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#19335 - 08/06/03 06:21 PM Re: worried about the future.....
Diane Albone Offline
Member

Registered: 07/08/03
Posts: 38
Loc: Tongeren/Belgium
Hello Girl,

I am Diane, 24 years old and oh i really do know what you are talking about! I also thought i would never find a suiteble guy who would love for who i am and not for how i look. Well i did, i met tom and i can say i am married for one year and almost 1 month ;- He had it hard in the beginning, people asked him what he saw in me, his parents said nasty things... Well when i asked him the same things he said he loved my sence of humour, my smile,... just diane he said. i just want to say there will come a day and then you will meet mister perfect... I know now that if we will ever seperate it will not be for my skin but fore different reasons. (Now we are so happy!) Start dating girl and don't forget to enjoy yourself! big kiss

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#19336 - 08/20/03 10:07 PM Re: worried about the future.....
thicket Offline
Member

Registered: 05/22/02
Posts: 9
Loc: Washington
I felt the same too, I am now 32 and have been in 2 serious relationships. My current BF is great, he calls me dry girl and loves to lather me up with lotion [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]! So it comes down to you, confidence can win almost anyone over. Learn to have it and your golden!
Good Luck!

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#19337 - 09/16/03 01:48 PM Re: worried about the future.....
Mafalda Offline
Member

Registered: 09/16/03
Posts: 5
Loc: Lisbon, Portugal
Quote:
Originally posted by Becky:
Hi! This is Becky Hudson, I am 19 and I have llem. Ich. But anyways I know that I am young right now, and I should not even be worrying about it, but I just can't help it, and i was wondering if some of you could share some advice or stories... I am ALWAYs afraid that I am never going to get married, and that's my dream. I always think, no guy is going to want to marry me, I mean what guy is going to want to sleep with a girl everynight that has to have greesy lotion on every night, and someone that has to cream up twice a day, and just stupid stuff like that, but it does bother me!!! But I was thinking that if i heard some good stories, it might make me feel better you know??!!!! Thanks so much!!!



Hello Becky! Im a new member. Im portuguese and i suffer from icthiosis all my entire life. Im 24 now, and i have all the same fears during muy adolescence, that you haver right now. My relationships all broke down... and i had the same toughts that you have.. "nobody loves me", "nobody will never love me"... but i was wrong! my mother has the same problem, she also suffers from icthiosis. She is the only one of five brothers and sisters (all very wealthy!) and she got married, and she had me. I came with the same stuff. Its not a very pleaseant thing to live up to... but whe have to be strong and have faith. I have someone very special right now. Hes very sweet, and understands my problem. Its not easy for someone to acept, but right now i just tough that i was blessed. I have a icthiosis lamellar, one of the very worst types of icthioses. I have it in all my body, in my hands, in my knees, foots, elbows...and so on, and so on...
and i have to do all those rituals of lotions.... that probably you also have. One day, if i get preagnant, i have to think take my son probably will suffer from the same desease, but thats something that i have to accept. You have to be strong. To try to accept you how you really are. Thats your only way to try to be happy.

And thats your first step to hapiness!
thing positive!
a very big kiss,
Mafalda

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