How do you mask your skin involvment?
Posted 01 February 2010 - 04:33 AM
How do you mask your skin involvment? Do you wear gloves in public even in summer, can you wear short sleeves, skirt, sandals...
Additionally, how do you mask your facial involvment? Special cream, powder...
Posted 01 February 2010 - 06:04 AM
That scleroderma can cause changes in the appearance ranging from slight to disfigurement is one of the most difficult aspects of the disease to accept, particularly for women. My calves look wasted and scarred, my thighs look burnt and lumpy (some skin has softened but not evenly hence the lumps!)my feet have patches of skin about a centemetre thick but my hands and arms are the best. I have the sclerodactyly hands, wasted forearms that also look burnt and lumpy upper arms that again look like they've been burnt. Oh yes my mouth is smaller and my lips thinner, thank goodness for lip liner!
Although I keep my legs covered, long standing habit, my hands and arms are usually on view and why not! I think of them as my scleroderma war wounds and I wear them with pride. I know people look at my hands and arms and I often wonder what they think. A friend of mine with sclero went to have lunch out with her husband and a couple at another table were so obviously looking at and discussing her hands that she went over to the table and gave them a close up.
For issues like telangiectasia there are special cosmetics, I don't have telangiectasia, thought I did but the spots went away, so have no experience with these.
I guess you can approach the changes in different ways, cover up, bear all or a combination of both, whatever works for you. We have a page on emotional adjustment that you may find helpful.
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Posted 01 February 2010 - 10:53 AM
It's hard to be open and discuss the disfigurement of this disease, but it's something I need to think and talk about.
For years I have worn long Capris or skirts in summer.
Frida Kahlo was a painter who had a wasted leg from polio as a child, and then had a horrendous traffic accident that left her with very scarred legs and arms after 30 operations.
She favored long colorful peasant style skirts and blouses, with lots of jewelry.
I don't wear rings or bracelets any more, but I'm thinking I'll adopt Frida's look.
Thanks again for sharing ideas and experiences.
Posted 01 February 2010 - 03:54 PM
Until this past autumn I wore the brand of makeup recommended in the link Amanda provided (Dermablend), when I bothered at all. One of my friends talked me into going to a free class put on by one of the famous high-end brands of make-up. I sure did not want to go, thinking that it wouldn't be much use since I couldn't stand the feel of a heavy layer of makeup that seemed to be the only thing that covered the red spots and I didn't want to buy any of the products, already having a basket full of stuff that I rarely use.
Silly me. Turns out I just didn't know how to put the stuff on. So what I do is use the liquid foundation from the Dermablend brand (not the cake concealer) and a small, long-handled concealer brush. After putting a spot of the foundation on a warm spot on my wrist to warm it and make it easier to apply, I dab a touch of it on the red marks and the discoloration around my eyes and blend in with the brush. Then I use a drop (all it takes of either foundation, so it should last long enough to make it worth the cost) of the brand of foundation that sponsored the class, again warmed on the wrist, and a bigger, still long-handled brush and holding the brush at the end of the handle, lightly flick it over the areas that need the colour evening out. The man that taught the class was absolutely adamant about using brushes, not sponges or fingers (or a trowel ) to apply make-up and to only use it where you need it. Most people don't need foundation or concealer on their foreheads, so he said not to use it there if you don't need it, etc. He also tended to jump up and down if you choked up on the brush handle, you had to hold it at the very end.
I was flabbergasted at how well it works!
So what did I buy? Two brushes and their foundation since it was a great match for my skin tone (the unblotchy areas!). I think you could probably buy similar brushes for less at an artist supply shop.
I never thought I would wear make-up very often. I'm too lazy for a start. I didn't like how it looked either. But like I said, it's all in knowing how to put it on. I can't believe I'm saying this, but if you have a chance to take such a class, it's worth the time.
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Posted 03 February 2010 - 03:51 AM
Posted 03 February 2010 - 12:54 PM
Posted 04 February 2010 - 09:34 AM
Off to buy brushes....
Thanks for the details.
Posted 05 February 2010 - 03:48 AM
Posted 06 February 2010 - 05:14 AM
I'm soon to be 20-year-old girl who has had scleroderma for about 14 years now, also during my teen years which are supposed to be worst time to suffer for cosmetic flaws. And here's my story:
About 40% of the left side of my body is totally covered with scleroderma, and the pigmentation changes are very, very visible. It's like I'm having a really bad bruise or dark, dark tanning on my tummy, and all of my left leg is shiny and browner compared to the right one. Also on top of that the left leg is visibly smaller than the right one hence the lack of fat-tissue.
And yes, people do stare at me on the beach when I'm wearing just bikinis. But it does not really bother anyone.. So why should it bother me?
I'm considered as one of the prettiest girl in our town (among 37000 habitants) despite the scleroderma, and I think that in the end it is the self-esteem that really matters. I do wear bikinis whenever I have a chance; When I go clubbing I don't wear long pants very often. Basically, whenever I have the chance to wear small clothes, I take the opportunity. Too bad it's under +15°C in Finland most of the year.
I don't really know how I got over this: It's a huge thing for a teen girl to look so different compared to the others, but I guess it was just me being so open about it. My friends are OK with it, and if people wonder what's that, I just simply explain this all to them briefly. This is probably the only thing I feel totally confident about in me - scleroderma.
This topic kind of made me feel sad: Why should we cover up the changes? I might not understand how you guys feel about the changes that might happen more rapidly than in my case, but the conclusion is the same in any case. Some of YOU GUYS once said in here that "We are not ugly, scleroderma is." This has really made an impact on me: I don't think I'm ugly, I don't even think my scleroderma is. I'm just me, and if I'm confident about my appearance and my scleroderma, my shiny personality and smile will radiate from me shiner than scleroderma ever will.
Posted 08 February 2010 - 12:04 AM
You attitude is valuable to us all who visit this site. It is the only right one, but very difficult to achieve.
Posted 08 February 2010 - 06:36 AM
thank you for your comment. I just wish that everyone can cope with sclero the best way they can and hopefully will accept it after some time. This was just my story, just one case among many others, but I can assure you letting scleroderma be part of you will make your life a lot easier.
All the best wishes,
Posted 09 February 2010 - 04:14 AM