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#15653 - 08/13/03 01:12 AM lets make a really informative post so we can better help each other
tyler Offline
Member

Registered: 06/27/02
Posts: 7
Loc: canada
after reading a lot of the posts here ive got to say that i dont really feel like ive learned much as far as caring for my skin goes.

theres plenty of posts about products people use but thats only a small part of it in my opinion.

i think it would be really helpful to discuss things like:

what is your skin like if its left untreated, and for different lengths of time like say a few hours since treatment, a day, a few days...

what is your skin like when its at its best

what do you consider good / bad as far as your skin goes

what treatments do you use, and i dont just mean what lotions, i mean showers, baths, how long, how often, do you do specific things for your hair, scalp, ears, hands, whatever.

the more you can share the more chance there is for all of us to learn something and have a better life for it so hopefully people will contribute to this.

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#15654 - 08/13/03 02:22 AM Re: lets make a really informative post so we can better help each other
tyler Offline
Member

Registered: 06/27/02
Posts: 7
Loc: canada
ill start, this might get long but i think the more specific we are the better this post will be.


well i guess ill start with how my skin is if its left untreated... pretty terrible. as a kid when neither me, or my family, or doctors really knew what to do for my skin it was pretty terrible. i had really thick scales of skin on the fronts and backs of my knees and elbows, i remember my lower legs were pretty much covered with thick brown scales. i cant remember exactly but i had scales in other places too, hips, knuckles, ankles, neck, armpits.
my skin would crack, badly, the worst spots were always my feet and the fronts of my hips (at the joint). and when i say bad i mean really terrible, like split right open and making it painful to move. sometimes to the point of bleeding.
my skin gets really tight when its dry, causing me to be stiff, just because my skin physically doesnt want to stretch. like not being able to straighten my arms or reach up high at all.


thats pretty much the terrible end of the spectrum. on the good end which is definately something that's come with time but what id consider to be a really good day for my skin is to go a full day without any sign of flaking, and losing only very little flexibility.

i guess i should add that over time ive gotten rid of all the thick, scaly areas that i used to have. as a kid i would have a long bath and then after getting out id scratch and scratch trying to get all the scale off. that probably wasnt the best way to go about it as far as pain is concerned but i guess its always going to be toughest the first time. and over time your skin gets to breathe and the scale is less thick and it only gets easier. im not sure if the scaling is a problem for anyone here but ill leave it at that for now.

as far as treatment goes that is the thing im really most interested in. knowing how my skin is now compared to what it once was im kind of reluctant to try a lot of the things a see mentioned on this site.

compared to how i was as a kid now the thick scaling is completely gone, the cracking is gone, my skin stays flexable enough to not really worry about it, the only thing now that bothers me is some light flaking sometimes happens if my skin is dry and also my skin seems to lose a lot of its elasticity over the day to the point where what will flex in the morning will wrinkle at night. the routine i have to go through to keep my skin like this though is what im hoping to improve on.


right now to maintain my skin as what i described as good before i need to have a long bath, every day. when i was younger i would stay in the water for about an hour, maybe 90 minutes but as i got older (i think mainly because i kept striving to get my skin better and better) the baths kept getting longer. now im in the tub 2.5 to 3 hours a day.

i should probably add that if im not able to keep this routine up, like say i miss a day or 2 it takes at least a couple days before my skin is back to being really good.

so to start i usually just sit in the water for roughly an hour, letting my skin soften up. at that point i remove any loose skin i can just by rubbing the areas where it builds up. i start with my legs as they tend to soften up first. then after ive removed any easily removed skin i lather up my legs with dish washing soap (liquid, i like to use palmolive) after doing that i will usually keep my legs out of the water until my skin dries right out with the soapy lather on it. then ill put them back in the water and rub off the soap. once ive done my legs ill start on my upper body the exact same way, first rubbing off any loose skin and then soaping up, letting that sit and rinsing it off. the soapiness of the water seems to help in loosening up any other loose skin so after soaking for a little longer ill again rub off any loose skin. at that point im pretty nearly done. i wash my hair just before getting out. i find that rather than lathering up the shampoo in my hair im best off just lathering it up a little at first and then just scratching at my scalp as i shampoo my hair to get rid of any flakes on my scalp.

having been in the water for so long i find this is also a really good time to shave, cut finger/toenails, clean out ears, things that maybe arnt as easy as they could be otherwise.

so thats basically it for the bath, the last thing i do is rinse the shampoo out of my hair and then i proceed to get out. immediately after getting out i put on lotion. i use vaseline. its not much fun being all greased up but its the only thing i can find that works this well. just after getting out of the water my skin is basically as not dry as its going to get so immediately i apply vaseline to my face, neck, arms, hands, joints (knees and hips) and my feet. the rest of my body i use vaseline cream which is basically a cream lotion with i think 30% vaseline mixed in with it. i use that for my chest/stomach, back, and legs.

after that its just a matter of letting it soak in. thats the real problem with vaseline is that it takes forever to soak in, and it takes that much longer becasue your skin is so moist underneath. i find it usually takes about 4 hours for it to soak in completely. in the meantime it helps to make sure that it is soaking in evenly everywhere, because some areas soak in faster than others. the slowest spots seam to be my forehead and on my cheekbones (maybe because the skin is thin there with little tissue underneathe?)

so yeah thats basically it. if i can i like to lay out in the sun while the lotion soaks in to open up my pores, get a little brown color to my skin (which is otherwise always red) and it also seems to speed up the process of it soaking in. you do have to be careful to avoid staying in the sun too long since with the vaseline on its easy to burn.


other things i can think of... drinking plenty of water definately is good. i dont really see a noticable improvement in my skin but i do feel better when i drink plenty of water.

alcohol... i saw this mentioned here before but when i drink my skin just goes to shiet. thats not to say i dont drink but it is at least something im aware of no matter how drunk i am because the only thing worse than an ugly drunk is an ugly ugly drunk with super dry skin.

so yeah this is a super long post but hopeully it can help some. and hopefully more people will contribute and help even more.

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#15655 - 08/13/03 02:24 AM Re: lets make a really informative post so we can better help each other
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Ryley looks her best when I use the Tazorac. Her skin appears normal, still tight but pretty close to normal. She will still go through a small peeling phase but she doesn't mind it. Her eyes close lots better.

She looks her worst usually in the winter or when she doesn't have the tazorac. She gets lots of splits in her hands and feet. Her scale are dark and cover her legs, arms, hand, feet, face, and scalp. Her eyes don't close very good either.

Her ears are cleaned every 30 days by the ENT. The rest of the time we use drops.

Baths are done in the morning and night. She is lotioned after her baths and through out the day with Eucerin plus lotion for body cream for her face. The Tazorac is only used once a week. In her bath we put a special mix of oils sea salt and much more that helps soften the scales. Then with a loofa and brown sugar scrub we scrub the scales and flakes off. She soaks in this until she wants out, wich is sometimes an hour. I can send samples of the bath mix. A friend of mine did research on different oils and oats and stuff so she could find something for Ryley. What she made works and smells great.

Her scalp we still struggle with. She has so much hair it hurts to get the skin out. We just use baby oil Gel. Then a shower cap. To comb it out we use a metal dog comb. You can get it at any pet store. We use the fine tooth one. Hope this helps a little. If I missed anything or you have a question let me know.

Shauna Johnson

P.S Ryley is 5 and she has LI
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#15656 - 08/13/03 08:27 AM Re: lets make a really informative post so we can better help each other
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Shaunaj,
Can you post the ingredients for the bath scrub so that I can try it? Thanks.
The main thing I do for my skin is to take hour long baths with salt in it, scrub my skin with a face cloth and put dermal therapy or vaseline on when I get out. I feel better in the morning if I've used vaseline, but it does feel gross, so I don't use it every time I bathe.
I shower in the morning and use the dermal therapy lotion and bathe at night. That does the trick for me.
For my scalp I alternate between T-Gel and T-Sal, which I leave on the entire time I am in the bath.
For my skin it's just a matter of keeping the flakes off so the moisturizer can work.
I, too, get wrinkly by the night time. That's why both the shower and bath combo work the best.
Lisa

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#15657 - 08/13/03 02:08 PM Re: lets make a really informative post so we can better help each other
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Here are the ingredients.
One is the Milk Bath. It has Powdered Milk, Goats Milk, Oat Flour, Sea Salt, Mineral Salt, Colloidal Oatmeal, Neem Pwdr, Corn Starch, Essential Oils of Lavender & Peppermint.

The people I know that make this make alot of soaps and bath needs. They have a cool soap the make with a loofa built in. Ryley likes this at times to because she can lather up an loofa at the same time. They also work good when the scaling is soft. We use the brown sugar scrub also. I lost the ingredients for that. If you try making it and can't I will send a sample if you would like.

Shauna Johnson
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#15658 - 08/16/03 11:52 PM Re: lets make a really informative post so we can better help each other
Sirena Offline
Member

Registered: 05/04/03
Posts: 57
Loc: Wasilla, Alaska
Hi Tyler,
The only time I go with out treating my skin is when I am out camping. Then I feel like the tin man on the wizard of oz "OIL! I NEED OIL" During my worst times is during the coldest and dryest part of winter when my skin can crack so badly that I look like an old lady when I am walking. It is at it's best during the summer, especially if I am at the beach. As to treatment,

Lots of baths often with salt water, lots of soaking and scrubbing, I actually use a dull knife to scrape scales off sort of like you would when descaling a salmon.(My friends and I often joke around about me being a mermaid, I spend so much time in the tub, I am part fish (ichthy) and part human, I have quite the mermaid collection now.)

I use lac hydrin once or twice a day mixed with vaseline intensive care or nivea or sometimes body butters. I constantly try different things when it comes to lotions these days. In the morning I top off the lac hydrin with a layer of glycerin which I have recently found works much better than the vaseline and aquaphor I have been using all my life. I have found that now my skin can breathe easier and I have much less scaling, it is much smoother now. I have tried and like protopic but have to use it sparingly since I have a sensitive liver. My skin doesn't interfere with my job or my life much just occasionaly does it become a problem for me. I am curious about the soritane everyone has talked about but don't want to trade one problem for another. I will be checking into the tazorac/protopic pill when it comes out since I had good luck with it but will do some more research before I do. That is all I can think of for now. Take care
_________________________
Michele Menzia

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#15659 - 08/17/03 08:57 PM Re: lets make a really informative post so we can better help each other
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Sirena,

Your bath routine is exactly as mine is...long soaks, salt, and scraping off with a knife...SO FUNNY...

And I too look like an old lady in the winter months, when stiff, cracked and dry...

I can't add much more to this Tyler...
Regards Pauline.

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#15660 - 08/20/03 01:25 AM Re: lets make a really informative post so we can better help each other
Sirena Offline
Member

Registered: 05/04/03
Posts: 57
Loc: Wasilla, Alaska
Hi Pauline,
Great minds think a like? [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
I thought I was the only one crazy enough to use a knife. Not too many scars! I left the knife out though and my 10 year old used it to poke holes in the shower stall so I have to make sure I put it away. Take care,
S
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Michele Menzia

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#15661 - 08/20/03 05:12 AM Re: lets make a really informative post so we can better help each other
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hey Sirena...

Regards the knife using...As Paul Hogan would say Mine "is not an ordinary knife"...I use a Surgical Scalpel...but luckily for me I don't have any kids running around the house....I keep it on an envelope just behind the bath taps...

And I remember one time last year, when my scraping judgement was so poor, that I DID HAVE quite a few slash marks over my arms and legs...It kind of freaked my Psychiatrist out....And my mother told my husband to keep those scalpels out of MY SIGHT....LOL...it was so funny...

No one trusted me with that scalpel...and my dermatologists were not too happy either....They asked me if I realised how fragile my lower skin layers were...and they also said that the scraping can have an opposite effect in the long run...as they felt that it could promote callouses to form (elsewhere aside from my thick hands and feet)...

Now I have the salt working wonders, I don't need to scrape the body with a knife anymore...except for hands and feet....

Sirena, do you ever tell lay people what you do with that knife...People almost faint when they hear that we can cut our skin off...it cracks me up that they think we would be in excruciating pain like normal skin would be...

I had a relative who just couldn't watch when my mum spent 1 hour cutting the skin off the soles of my feet...

Has anyone who has EHK...(thick hands/feet) ever tried to cut a long piece off without it breaking....JUST LIKE PEELING AN ORANGE?
it is great fun...

HAPPY SCULPTING... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Love Pauline...

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#15662 - 08/20/03 01:30 PM Re: lets make a really informative post so we can better help each other
Annamarie Offline
Member

Registered: 07/22/03
Posts: 64
Loc: La Mesa, CA.
When reading the skin care regimens I noticed many use a knife to get the scales off. What my son has been using for years with great results, and much safer than a knife, is a plastic putty spatula. It has an uneven edge, and lifts up the scales easily. Recently though he began doing the salt bath soaks, and the scale buildup is decreased dramatically. I think now he is just using a wash cloth. I am truly amazed at the difference the salt baths make. So far he has been using regular table salt, but I have ordered some dead sea salt that I must just add with the table salt. At my local Smart N Final you can get a 20 pound bag of table salt for around $5.00. The dead sea salt with cost me $70.00 for the same amount. I want to see if the minerals in the dead sea salt make a bigger difference.

Annamarie

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