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#15778 - 07/27/04 09:16 AM The best and worst with LI????
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
I was wondering if I was to ask you what is the best thing about having Lamellar Ichthyosis and the worst thing what would you say? Advantages different from people with normal skin and disadvantages. If you know what I mean!!!! I was looking at Winson my little boy with LI and that question came to me but he is too little for me to ask him, so I thought who better to ask than you lovely bunch. Interesting question, looking forward to your answer. Thanks for helping....
Carmen

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#15779 - 07/28/04 05:02 AM Re: The best and worst with LI????
Nadine Offline
Member

Registered: 06/23/02
Posts: 20
Loc: Raleigh, NC, USA
I would say that the best thing is that it makes you unique. It helps shape who you are and who you want to be. Its a part of you. I don't know if i would trade it in for different skin.

The worst is...that it sucks...not gonna lie. It wears you down...sometimes i get really bummed out about it...the repetitiveness of lotioning...the worrying about overheating.

But thats life....and the main thing to remember is that this doesn't have to define you...or run your life...only You can do that. *grin*

Hope that helps.
Nadine.

PS. Thanks for letting me get all poetic for a moment. lol.

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#15780 - 07/28/04 08:44 AM Re: The best and worst with LI????
Ant_Hayward Offline
Member

Registered: 09/18/03
Posts: 20
Loc: UK
Best Thing?
I may be unique, i may be different from everybody else, but i dont want to be.
I think the best thing about LI is that everybody who knows you, absolutly adores you.
"Your so brave" "You cope really well" "Your always happy" "You never moan about things"
This is always good to hear - but if you suffer from it you dont know any different so you just get on with it.

The worst thing about LI -
Waking up each morning nad putting creams on, cloths on which wont dry skin too much, trying not to get cream on everything you touch. Waking up each morning hoping you havent scratched yourself during the night, talking to new people and see there eyes wondering around your looking at your skin,

At the moment Im finding things a little tough, just split up from long term relationship (well, long for me as first proper relationship) and self confidence is slipping a little - time for a dark room and a nice cuppa i think.

Have i moaned too much? Sorry. I will probably to totally different next week. Its that lovely roller coaster of emotions again. Hehe
Take it easy


Ant
_________________________
thank all
anthony

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#15781 - 07/28/04 11:58 AM Re: The best and worst with LI????
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
I think the best and worst things are usually different sides of the same coin, it's all how you look at it. So here's my take on some of the same things Nadine and Ant already said.

Best and worst:

  • Not being able to perspire (for me, not at all). Obviously, overheating is an issue; but that's mostly an issue in my personal life. In my professional life, it's really a good thing. I'm usually in a climate controlled office (or at a conference, where the hotel/conference center is almost always too cold). I always look cool, calm and collected (remember all those commercials: "never let 'em see you sweat?"). And, absent issues with my creams, I don't need to have my suits dry cleaned as often as other people, precisely because I don't sweat and therefore don't have much body odor (on the other hand, silk shirts I DEFINITELY can only wear once and then I have to have them cleaned because my creams almost always stain through the silk in a single wearing). At the office, a lot of people are jealous of me that I can't sweat--they think that's the luckiest thing in the world.
  • Looking different. You definitely know very quickly a lot about people's character based on how they react to you. As a child, it was a much simpler "you know who your friends are" (and didn't have to spend as much time sorting through superficial phonies who weren't going to be real friends to you when it counted--they already filter themselves out). The worst thing about looking different is trying to hard to look "normal," thinking that you're succeeding, and then having someone comment (did you get sunburned? do you have allergies? have you tried xxx?) Very sweet, well-intentioned inquiries, but an immediate reminder that I am not normal, I do look different, and people do notice. In a weird way, sometimes that bothers me more than the outright name-calling I got as a child (maybe because that was so clearly something mean-spirited and unfair, I just reacted to it differently, whereas this other situation is someone who is genuinely trying to be kind in their inquiries).
  • Having ectropian and no eyebrows. I think this is one of things that is most noticeable to people, even if they can't put their finger on it right away, about what makes my face look so different (red eyes from the ectropian and no eyebrows). I always draw in my eyebrows with a brow pencil these days, which really helps fill out my face and frame it in a more "normal" way. And so long as I scrupulous remove all makeup at night and sleep with a night-time ointment in my eyes, the ectropian is controllable. On the good side, a lot of people think this is all kind of cool, particularly when I was younger. I've had people think I shaved my eyebrows as a fashion statement, people who've told me they have considered shaving their eyebrows so they could draw them in anyway they wanted, and all around lots of compliments on what beautiful eyes I have in general.


Alright, I'll stop here; I'm going further down the list than best/worst. I'm generally a "glass half full" kind of person, so I see mostly advantages. Overall, I'm glad I was born with ichthyosis. I like the person I'm becoming and the opportunities I've had, and clearly having ichthyosis has been a big part of that. Who knows where I'd be if I didn't; I'd surely be a totally different person. When you look at the struggles lots of other people, emotional or physical, there are plenty of worse things you could have to deal with than ichthyosis.

But what a fabulously cool question, Carmen! I'm so glad you asked this! I can't wait to see what other people say.

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#15782 - 07/28/04 12:27 PM Re: The best and worst with LI????
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Hi! I asked this question becase I wanted to see how people see themselves. I myself has normal skin and my little boy has LI. I often wondered if I could be anyone in the world who would I want to be? And the answer will always be "myself". I think it is because no matter what, we are comfortable with the knowning and as Ant said you don't know the differ anyways. I am very interested in all your answers. It is food for thought.
I read a story about a man who was given a horse and it was a good thing. Than because of his horse he was called to go to war so the horse is now a bad thing. When he was at war he fall down from the horse and hurt himself that was a bad thing. Due to his injury he was allowed to go home, now his hurt became a good thing. And this story want on and on where the same thing is both good and bad. So interesting, so rich and deep.
I believe it makes you all a better bunch. You learn what not to become: superficial phonies, rude, non-understanding (by choice), uncaring etc. From what I have seen and what I have read from all the posting, is you all have something others don't. You have the get up and goes. You don't have self pitty parties, you move on with life. I am sure you have your down days but you soon get up. I have much to learn from you all.
Keep up the good work and don't let Ichthyosis get in the way.
Looking forward for more wonderful answers.
Carmen


[This message has been edited by Bare Carmen (edited July 28, 2004).]

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#15783 - 07/28/04 04:18 PM Re: The best and worst with LI????
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
I myself don't have Ich, but my 6 year old does. She has LI, she also complains less then her sister who doesn't have Ich. As a parent I would say the best thing of Ryley having it is that she has a personality unlike any other childs. She is accepting of all people no matter what, she has a big heart with lots of love. She has brought everybody closer together in the family because of it. The special spirit she brings into any room she walks in. And we have got to meet some really great people at conferences and on this board.

The down side is the splits in her feet get so bad she has to be pushed in a stroller and as a mom you want to make it better but can't do much other then keep them clean, gooped and wrapped. Her hands split the same and even coloring is painful for her. People pointing or saying things as if your eyes are closed and you can't hear. Ryley doesn't sweat at all so family trips need to be well planned. We have to not go to places like Arizona or Vegas during the hottest months or times of the day and we have to pack a whole extra suite case for her cooling vest cooling packets, mister, neck wraps and lotions. Even with the downs I am still like Laura though the glass is half full, and there are far worse things she could have been born with then Ich. Hope everybody has a good day!

Shauna

[This message has been edited by ShaunaJ (edited July 28, 2004).]

[This message has been edited by ShaunaJ (edited July 28, 2004).]
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#15784 - 08/04/04 09:17 PM Re: The best and worst with LI????
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
The Ups:

-No zits since my skin doesn't produce oils
-No body odor due to sweating
-My skin will never sag - which means even once I'm a senior citizen I'll still look younger than I truly am
-Ditto on knowing who your friends are
-Sparse eyebrows so I don't have to worry about plucking the "unibrow" that some women in my family have to deal with!
-Sparse body hair so I don't have to shave
-Limiting my sun exposure is a great excuse to wear fantastic looking hats all year round
-I can't wear makeup which some might think is a down, but I don't because think of all the money and time I'm saving!
-while it is a down to have to be very selective about the clothing I can wear due to both how the fabric affects my skin and how much sun exposure I get, I also don't feel obligated to have to fuss over my appearance and wear uncomfortable clothes just to look good like a lot of women do.
-having a good excuse to soak in a hot bath for hours at a time

The bad:
I'll skip this part as I think about it WAAAY too much [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15785 - 08/04/04 09:25 PM Re: The best and worst with LI????
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Chandra - I so enjoyed reading your list! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#15786 - 08/11/04 04:28 PM Re: The best and worst with LI????
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Why thank you! It took me a long time to come to this conclusion, and I still have to work very hard to maintain this philosophy:

Life is so much better when you recognize the good you have instead of grumping about what you don't have. You waste energy being negative, and by not wasting energy, you have more ability to work on changing things for the better in your life.

It also makes you a much less grumpy person! Have you ever seen interviews done with people who are living extremely long lives, especially the ones past 100 who have been very active during their entire lifetime? They really tend to follow this philosophy of enjoying what they do have and working to change what they can to make things better rather than lamenting the things they don't have or can't change. These people are also incredibly healthy in spite of whatever ailments they've ever had or disability they might have had since birth. These people take care of themselves, and they give what they can to others, whether it be a smile and a wave each day as they walk by, or helping feed the hungry, clothe the poor, etc.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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