Page 2 of 3 < 1 2 3 >
Topic Options
#15663 - 08/21/03 01:50 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
Pauline,
Actually that was the first time I told anyone, I figured everyone would think it was too weird. I have nothing as fancy as you and probably a good thing since I can be a clutz. I don't do that everyday, once or twice a week and I usually just get the dead skin off and try to stay away from the lower layers, mainly cause it really hurts if I don't.
I am going to go check out some of the salt websites you posted next. Take care
_________________________
Michele Menzia

Top
#15664 - 08/21/03 04:13 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
Sirena,

it is not that I deliberately sought out the surgical scalpel....as I have owned it since I was 5 years old...that is 34 years old...

My mother used to have District Nurses come to our home 4 nights a week, to bath me, and scalpel my hands and feet...they would sit there for 1 hour 4 days a week cutting the thick stuff of my skin...and they did this until I turned about 16 years old...and then I took over...

But I hardly use it now...just scrape the soft surface stuff, when I hve been soaking too long....

And AnnaMarie you are so right...it is remarkable...and I swear that the salt must be capable of slowing our skin growth down...I just feel that the scale stops growing thick again....

You know before I started the salt baths, I put one application of 12% Lactic Acid on my legs and arms, and wrapped myself in plastic for 12 hours, and after that I haven't needed to touch the acid cream...The salt has just stopped it in its tracks.....ABSOULUTELY AMAZING STUFF....and I am glad to see that it is not just my imagination...or exaggeration....

And this is why I don't need the scalpel on my body anylonger, like your son, a facewasher rub is sufficient enough....

Top
#15665 - 08/21/03 10:00 AM Re: lets make a really informative post so we can better help each other
mary bellucci Offline
Member

Registered: 09/29/00
Posts: 67
Loc: Edinboro, Pa. USA
How much of the salt do you put into the tub? I have some dead sea salt and would like to have my son try this. Thanks!

Top
#15666 - 08/21/03 01:40 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.
I just put an old plastic laundry soap scoop in a big container of salt for my son to use. I have him put in 2 scoops. It probably comes out to about 2 cups, maybe a little more. Try to find a place that sells bulk table salt, it's much cheaper than the dead sea salt. I want Ryan to try the dead sea salts because of all the minerals, and maybe I will just mix half and half with the table salt.

Annamarie

Top
#15667 - 08/21/03 07:49 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
I have been looking for an alternative to the steak knife, thanks! I will try to puty knife next.

I was wondering where you got a scapel Pauline, I thought that maybe you were a nurse. I have not been using as much salt as you guys but what I do use helps a lot, I will try to double it and see what happens .. Has anyone checked to see who has the cheapest dead sea salts or maybe we should change the name to "dead skin salts" [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Too bad we don't all live closer, we could start our own little ichthyosis co-op and save some money on all these products we are buying all the time. I know one thing, thanks to this website my skin has improved dramatically since this time last year thanks to all of you and your ideas. I appreciate it.

You know everytime I put in salt into my bath I look at my mermaid art work on the wall and chuckle. I am beginning to think we really are decendents of the original "mermaid" people.
[img]http://www.ichthyosis.com/ubb/smile.gif[/img] Just wished I looked like Daryl Hanna from the movie "Splash"!
Take care.
_________________________
Michele Menzia

Top
#15668 - 08/25/03 01:15 AM Re: lets make a really informative post so we can better help each other
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I seem to recall that some manufacturers will give you discounts on their medicated lotions if you order direct from them and identify yourself as a member of F.I.R.S.T. I could be wrong about that, so check their web site at www.scalyskin.org If it isn't shown on their web site, email them or call them to double check.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

Top
#15669 - 10/06/03 12:11 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
hey thanks for all the replies everybody

those of you using salt baths, what effect does it have? i know i tried salt baths when i was young and didnt really like it.
then again i can understand how it can make your skin softer faster than water alone so maybe its worth another try. i can keep my skin from scaling/flaking as it is as long as im able to tend to it every day but if this lets me do it quicker then that'd be a big plus. its not going to leave my skin tasting all salty is it?

to those using knives i can relate, i use a pointy nail file to get under the thick skin on the soles of my feet. i havnt really found a good way to keep the soles of my feet good though, its more like wait til its really bad, get everything off, repeat.

for hair i use outrageous brand shampoo (for normal hair)... nothing special. i just make sure my scalp is plenty soft before i shampoo (i do it at the end of a bath). i had fairly long hair at one time and did have trouble with flaking. i also found that a metal dog comb worked good (used to have 3 of them). now i just shave my hair short, its definately a big improvement. also with short hair i can massage some lotion (vaseline usually) onto my scalp and then just wash out my hair with soap & water later on.

one question i have for all of you is what do you do about showering at the gym/after working out or after going swimming. i find that just applying normal lotion (say vaseline intensive care) my skin will eventually dry out much worse than it was before. problem is that it needs to be something that soaks in quickly... cant really chill in a change room waiting for lotion to soak in.

thats about all i can think to add, well i guess one change. i used to always have baths at night, before i went to bed. i always hated that because it choked off my social life and also because i would always be feeling my worst, that being the longest time since id cared for my skin, in the evening when i wanted to be doing things. so this year i set up my schedule so i dont have classes til 11 every day, ive been getting up at 6, having a 2.5 hour bath, then i eat, take a bit of time to relax, watch tv, whatever and then ill work out for about a half hour and try to leave myself about an hour or so to make sure my skin isnt greasy before i get dressed & go out.. its definately tough getting up but this way im feeling my best for the day to come so im happy with it. i just need to find a way to bathe while i sleep and id be set. =)

Top
#15670 - 10/09/03 06:19 PM Re: lets make a really informative post so we can better help each other
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
When my skin is left completely untreated for six hours or more, the peeling starts increasing dramatically as my skin is drying out. As it dries out, my skin tightens, making walking and movement painful. If I can get into a bathtub within 8 hours after the last time I bathed or showered, the ill effects are immediately remedied.

When I was a child, I participated in a study where I was not to bathe or moisturize for two weeks. By the time the third day passed, I was in agony just sitting. Any contact with anything - a hug, trying to move to pick up a toy or a book, hurt immensely. My mother told me to go take a bath but not to moisturize afterwards. I felt better for only an hour before I was just as dry, and I went to bed at my grandmother's (where I was to stay the weekend). My grandomther didn't have the heart to keep me from moisturizing and bathing after seeing how much I was still hurting, so she called my mother and told her I was just as bad the night before, so we eneded my participation in the experiment.

On very rare occasions I have gone 20 hours between a bath/shower, and that is usually if I am travelling, or there has been some sort of emergency situation where I needed to drop my normal routine, such as if someone has had an accident or illness and I need to go to the hospital to be with them, etc.

When my skin is at its best, it feels relatively soft, with little peeling. It is pale (for me, pale is rather pink compared to most caucasians) and somewhat supple. I still cannot abide having much pressure strike my skin - such as one feels when dribbling a basketball, or running across pavement of some sort.

I consider my skin good when there is very little visible peeling on my face and neck, when my skin does not hurt, when I have a free range of motion with my hands and legs (because the skin is not so tight I can't move all the way) and when I am pale due to not being either overheated or sunburnt. I do have to stay covered from the sun at all times as I burn in less than ten minutes, even on overcast days. The only time I don't have to cover up from the sun is when it's raining or foggy.

I bathe or shower two to three times a day, depending on my schedule and how I feel. If I feel poorly, I may bathe up to four times a day. Baths are always better than showers, I think it's because most of my skin gets immersed in water and can absorb more.

I use a scalp treament to help keep scales off my scalp at least once a week, and use a special shampoo anywhere from 1-4 times a week.

I clean out the skin flakes from my ears roughly every other day or three times a week.

As we don't have a dishwasher (other than me) I wear disposable latex gloves whenever I wash dishes to protect my hands. If my skin gets wet and I do not moisturize it with both oil and ointment, it dries out very badly and becomes painful. I use the disposable gloves instead of the reusable ones because I am very susceptible to skin infections and using gloves only once cuts down on my chances of giving myself an infection.

If I have been doing something with my hands that has exposed them to friction - like folding clothes, sewing/quilting (my hobbies) or handling a lot of paper, after I'm done with whatever I was doing, I will wet my hands, put aloe and then petroleum jelly on them and put them in gloves for at least an hour. I should do this more often than I do, probably at least once a day, but I only do it a few times a week as my hands get so hot and stinky in the gloves.

I have to clean the rims of my eyelids several times a day as I have severe ectropian. My eyes produce what I and my family call "eye goop." If I do not clean it off frequently, my eyes start to sting and my vision gets fuzzy. To clean it off, I wet either a cotton swab, washcloth, piece of toiletpaper, etc and gently rub it across my eyelid to remove the goop. If I don't wet something and the goop is dried on, my eyelid will get scratched and bleed. I am told I am fortunate in that even though I have ectroprian so severely, my tear ducts still work well enough to keep my eyes moist. My tear ducts actually have to be overactice (which they are) to keep my eyes most as the ectropian is bad enough that the tears don't stay in my eyes, often making it look like I'm crying to people who don't know me.

So that's my routine.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

Top
#15671 - 11/03/03 10:35 PM Re: lets make a really informative post so we can better help each other
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
Well, alot of questions but good one's to answer.
First, my skin is dry right around my menstral cycle probably the week before my period. I am assuming harmones. The 3 weeks after my cycle my skin looks normal but of course with the help of Lac Hydrin. I can control it know which makes me happy. True it a ritual every morning but at least I look half way decent by the time I am done. I, particularly get dry in the afternoon so I take a moment in the bathroom lathering up with Nivea cream. I feel better once that is done. I guess the better months are the warmer months for my skin and the worst are the cold months. However, I did notice right before it snows my skin get somewhat soft. Ironic, huh! but true. I feel on good days (emotinally) my skin is at its best and the worst days it is just horrible. I hope that this winter in NY will be an easy one so my skin is somewhat decent. What I do get upset about, with my skin, is when its very dry. Boy does it hurt and it flakes like crazy. Those days I just pray it will get easier as the day goes on.

A small note that I have been using for years pumice stones to scrub my skin. I find that once the skin is soaked for at least 10 minutes the easier it is to rub with the pumice stone. Dove, makes a great soap which definently does the trick and it smells great. I also use Mineral bath salts which help the skin soften up.

I also lather up at night if I feel extremely dry with either Vitamine E cream or Nivea and use a cotton pyjama. This helps enourmously at night and especially in the morning.

I also need to take care of my eyes now more than ever. The deterioration of my cornea due to the ichthyosis and the pulling of the my skin has put me in a routine. I put an ointment called muro ointment and than I use aquaphor to close the eye that somewhat helps to help soothe that dryness.


Hope that helps a bit.



[This message has been edited by sofia (edited November 03, 2003).]

Top
#15672 - 11/26/03 06:52 PM Re: lets make a really informative post so we can better help each other
Korthaln Offline
Junior Member

Registered: 11/26/03
Posts: 1
Loc: Dundas, Ontario, Canada
Hi All..

Im am just starting to look into this condition.. I think I have some form of it, but I am not sure which one.. It is not as bad as any of yours. The worst I get just some slight flaking on the face and arms.. And black scales on the back of my legs.. I shower once a day in the morning and scrub with a hard sponge and then just put some curel cream on afterwards and my skin will stay soft. I find I have to switch creams every 4 months as my skin seems to build up a resistance to them.. Then after about a year, i can go back to them and they work again. I can go for a couple of days before the flakes will be noticable by others. The worst spot is my hair.. I just cant keep it flake-free, I just wanted to know what is a good product to use in your hair to help??
I have pretty short hair and the only way I can ever get rid of the skin is when i buzz my hair away..
I also live in Ontario and the climate has effected me in the past, but It seems that my skin is getting better on its own..During the summer, My skin is perfect and I dont have to apply anything to it to get it to be soft and my fingers dont crack up anymore..
The sun really seems to help my skin and I dont know what vitamin the sun gives out..

Umm.. I think thats is all I have to ask and say.. Thanks for listening to me ramble along!
-Kevin

Top
Page 2 of 3 < 1 2 3 >

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information