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#19468 - 01/04/05 09:54 PM Living with my skin
ILUVKERMIT Offline
Member

Registered: 01/04/05
Posts: 6
Loc: Covington, LA USA
Howdy, y'all from the land of crawfish pies and red beans and rice. I have never participated in the board, but I feel as though now is the time. I am 30 yrs old, married, mother of 2(ages 5 & 9). I have lived with my L.I. all of my life. I have NEVER really dealt with it. Recently I have been thinking about icthyosis and how it has made me both more critical of myself and how it has probably made me an overachiever. Kids are cruel and I, too, had my share of names like "lizard" and "snake girl". Those wounds are still there and everytime I think of those days I really have to ask the Lord to get me through the feelings. My wonderful Mom has always thought that she could have done something different to prevent me from having this-like something she should've done while she was pregnant. I know she doesn't say it alot but I know she thinks about it. I have a wonderful husband who accepts me for what I am and what I have. He has never made me feel inadequate, unattratctive, or unloved. I guess prayers do come true. I have my own hang-ups: I worry about my physical appeal to my husband and how he could want me, WANT ME? So, we have been married for over 10 years and I just deal with my worries, but I want others out there to know that there is someone for everyone and that GOD has a plan for us all. Don't get me wrong, I am not preaching to you- but I feel compelled to say that I know we don't always know why things happen to us, or why God does give us this awful condition, but he meant it to be.

A new twist to this in the last few years- explaining to my kids what icthyosis is and why I am different from other mommies. But you just grin and bear it.


Well, thanks for listening.

------------------
Kermits Piggy
_________________________
Kermits Piggy

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#19469 - 09/20/05 09:56 AM Re: Living with my skin
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Hi, I don't know if you will get this posting anytime soon. But, I must ask how are you doing since Hurricane Katrina? I hope all is well for you and your family. I have always wanted to see Louisianna and of course, like many people are doing at this time, I keep the many people there in my prayers. However, I agree with you that have LI has made me somewhat self cautious at times, especially with my husband of soon to be 21 years. I am usually somewhat confident. But, my husband was hurt on the job years ago and he became self cautious too and I guess now I understand how he can be attracted to me regardless of my skin disorder since I still find him as attractive and sexy as he always has been to me. So, I guess we need to remind ourselves that love is truly more than skin deep. Beyond that, we should just lotion up and put on things that we feel attractive in.

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#19470 - 02/22/06 12:04 AM Re: Living with my skin
rdodge Offline
Member

Registered: 02/21/06
Posts: 7
Loc: Minnesota
Reading this was like reading something I had written. I don't have children but so many other things were the same. I too have lived with LI all my life. In my younger days the pain, the teasing almost unbearable. With God's grace and strength it has been the one and only constant in my life that I could depend on. I never knew anyone with this condition, and back in the day the web didn't exist. Doctors didn't really know how to treat this condition, I was just and odd ball. Life certainly gets easier. I am looking for people to connect with and help in any way I can. Thanks for your words of encouragment as well.


Quote:
Originally posted by ILUVKERMIT:
Howdy, y'all from the land of crawfish pies and red beans and rice. I have never participated in the board, but I feel as though now is the time. I am 30 yrs old, married, mother of 2(ages 5 & 9). I have lived with my L.I. all of my life. I have NEVER really dealt with it. Recently I have been thinking about icthyosis and how it has made me both more critical of myself and how it has probably made me an overachiever. Kids are cruel and I, too, had my share of names like "lizard" and "snake girl". Those wounds are still there and everytime I think of those days I really have to ask the Lord to get me through the feelings. My wonderful Mom has always thought that she could have done something different to prevent me from having this-like something she should've done while she was pregnant. I know she doesn't say it alot but I know she thinks about it. I have a wonderful husband who accepts me for what I am and what I have. He has never made me feel inadequate, unattratctive, or unloved. I guess prayers do come true. I have my own hang-ups: I worry about my physical appeal to my husband and how he could want me, WANT ME? So, we have been married for over 10 years and I just deal with my worries, but I want others out there to know that there is someone for everyone and that GOD has a plan for us all. Don't get me wrong, I am not preaching to you- but I feel compelled to say that I know we don't always know why things happen to us, or why God does give us this awful condition, but he meant it to be.

A new twist to this in the last few years- explaining to my kids what icthyosis is and why I am different from other mommies. But you just grin and bear it.


Well, thanks for listening.





------------------
Blessed From Minnesota

Rachel
_________________________
Blessed From Minnesota

Rachel

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#19471 - 03/10/06 06:14 AM Re: Living with my skin
rabia Offline
Junior Member

Registered: 03/09/06
Posts: 3
Loc: pakistan
hi
i m new to the board i m really very surprised to see alots of people of my condition
i m 21 year old and i have a lots of question in my mind
1)i should marry or not
2)what will be effect of my disease on my child
this is the most irretating question in my mind
plz any one of u can answer this question
with regards
Rabia
_________________________
rabia

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#19472 - 03/30/06 09:38 AM Re: Living with my skin
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
Rabia,
I am sorry that I didn't get to your posting sooner.
I know that the questions that you have are pretty common amongst this group of women.
Should you marry? Absolutely, everyone deserves to be loved and have a relationship. We are humans, we are not meant to be solitary creatures!
Should you have children? I would never presume to tell anyone whether they should or should not, but your decision may be based on what type of Ichthyosis you have. You didn't mention what kind you have, but this would be something you would want to talk to your doctor about...the odds of passing it on, etc.
Please, feel free to bring your questions and concerns to the board, that's what we are here for!

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#19473 - 03/30/06 02:40 PM Re: Living with my skin
Kelly2006 Offline
Member

Registered: 03/29/06
Posts: 8
I was the same about years ago thinking will I marry? will guys want me? But I know I will have guys wanting me in the future - im single and enjoying it [img]http://www.ichthyosis.com/ubb/smile.gif[/img] - as they always flirt with me in nightclubs etc ( loving it hehe ) I always forgot that i got KID Sydrome unless someone stare at me a lots then I remember. I often worry if my future kids will get KID Sydrome but im too young to be having kids [img]http://www.ichthyosis.com/ubb/smile.gif[/img] anyway just chill, have fun and think postitive

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#19474 - 03/31/06 04:21 AM Re: Living with my skin
rabia Offline
Junior Member

Registered: 03/09/06
Posts: 3
Loc: pakistan
hi,
i have ichthoysis vulgaris,i have no problem with my skin i m living happily but i dont want to pass it on to my childern,so what should i do plz reply me
Quote:
Originally posted by Glori:
Rabia,
I am sorry that I didn't get to your posting sooner.
I know that the questions that you have are pretty common amongst this group of women.
Should you marry? Absolutely, everyone deserves to be loved and have a relationship. We are humans, we are not meant to be solitary creatures!
Should you have children? I would never presume to tell anyone whether they should or should not, but your decision may be based on what type of Ichthyosis you have. You didn't mention what kind you have, but this would be something you would want to talk to your doctor about...the odds of passing it on, etc.
Please, feel free to bring your questions and concerns to the board, that's what we are here for!
_________________________
rabia

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#19475 - 04/03/06 09:31 AM Re: Living with my skin
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Rabia, unfortunately, you have a 50/50 chance of passing on IV, and since the gene is unknown there is no way to detect the problem in a fetus, nor can you undergo in vitro procedures to prevent it.

I'm in the same situation. I'm sorry.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#19476 - 04/11/06 04:04 PM Re: Living with my skin
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Adoption is always an option! You don't have to give birth to be a parent and there are so many kids all across the planet that need homes.

If you don't want to adopt but you want a child in your life, consider volunteering in your community to work with children, volunteer in the schools, maybe become a childcare provider... there are many options out there.

Do not let your ichthyosis stop you from getting married and having a relationship with someone else. You are a human being who deserves love and companionship just as much as anyone else, so don't sell yourself short.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#25307 - 10/22/09 08:00 PM Re: Living with my skin [Re: Kelly2006]
Jemimasmum Offline
New member

Registered: 01/31/09
Posts: 2
Hi Kelly
I don't know if you still visit this forum, but I would love to email you. I have a daughter with KID. Or are you on facebook?

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