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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 BlueJeen

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Posted 25 January 2011 - 04:17 PM

I know we're all dealing with our own struggles, but I was wondering what some of you do for beauty upkeep? I know that when I get a good haircut or facial, I feel better about myself and the way things are going. That may sound superficial, but sometimes treating yourself with these little things can do wonders for your self esteem. :fairy:

My sister recently bought me a spa certificate for holiday, and I was thinking of doing an ultrasound procedure for my saggy double chin (my only skin issues right now are mild tightening on my right hand). Have any of you done a proure such as this? There's no research online about doing this procedure on people with autoimmune conditions like sclerosis.

Any insight on your beauty routines - what you do and don't do would be so helpful? (If they entail brand names, please send me a PM on them.) I was recently diagnosed in December and trying to adjust to my life with this diagnosis.

Thanks for your help!

Erika

#2 Shelley Ensz

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Posted 25 January 2011 - 05:32 PM

Hi Erika,

I'm sure with you on the thinking that beauty upkeep is good for the spirit. I consider regular beauty routines to be part and parcel of my medical care, in fact, it's more important to me now than it was before I became ill. Even a bad hair day can drag me down much more than it used to.

Generally speaking, I think systemic scleroderma is going to eventually do enough skin tightening that we really don't need to go out of our way to encourage it. So I invest my beauty dollars on non-skin-tightening procedures, instead, figuring that the mere passage of time is likely to resolve facial sagging without any extra effort or expenditure on my part. Plus, I'd really hate to do anything to encourage the development of more skin fibrosis, and the resulting inflammation from any procedure has the potential to increase that.

Of course, I pretty much fall on the nervous-ninny end of the spectrum when it comes to any elective procedures. I try to avoid anything that doesn't have to be done.

A tip I have though is to ask around to some of your good friends. Say you are considering a procedure for your skin, or a makeup makeover, or some new wardrobe pieces (perhaps different styles or colors or fit), or a new hair style or color. Whatever, just give them a selection of items to pick from, and ask them which item they think you'd benefit the most from doing. You could always use the spa money for a new hair style or color, for example, if that ended up at the top of the list, plus you get other beauty ideas, too.

By garnering input from those around me, I've discovered that I was often not seeing what would benefit me the most. I'd spend money on more black outfits; but when I asked my friends about it, I found out that black tends to make me look old, washed out and tired. So I switched to more of a brown-based wardrobe. A beauty makeover specialist let me know that I'm an autumn, not a winter as I thought, and that pink and rose makeup does not enhance my skin tone. I take friends shopping for fabric with me, because I don't like the colors that look best on me, but they can zero in on them every time.

So unless you're absolutely certain that this is the only route left to improving your looks, I'd favor avoiding any skin procedures and looking around for other ways to get a similar (or perhaps even better) boost.

But whatever you do (even if it is a skin procedure), I hope that you truly relax, enjoy and indulge yourself without a care in the world so that you get the absolute maximum enjoyment out of it all. You go, girl!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 BlueJeen

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Posted 25 January 2011 - 07:20 PM

Thank you Shelley! Such great insight and understanding. I have to say, I was about to go in and get the procedure until my boyfriend stopped me thinking that might not be a great idea! I've never had to think about stuff like this before, but I guess this is me slowly realizing that life has to adjust in order to live comfortably with this condition.

Thanks again!

#4 Joelf

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Posted 26 January 2011 - 01:27 PM

Hi Erika,

This is a very interesting thread; I agree with you and Shelley that it really does raise the spirits to have a good ongoing beauty routine.

When I had to have IV Cyclophosphamide every month for six months, I would always visit the lovely shops in London afterwards and usually treat myself to something a little bit special (hopefully without spending an absolute fortune! ;) ) Nothing, not even when I was feeling a little bit queasy, ever put me off shopping!! :rolleyes:

To be honest I'd be a bit dubious about having any surgical procedure; I had my varicose veins injected with foam once which was an unmitigated disaster! (Long and unbelievably tedious story with which I won't bore you now!! ;) ) Suffice to say I've realised I can live without legs to rival Betty Grable and I'd rather indulge myself now as Shelley has suggested with some nice clothes and some new make up.

Enjoy your time at the spa!! :VeryHappy:

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#5 ladyhawke

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Posted 26 January 2011 - 03:58 PM

This "is" a good thread. I hope that more people pipe in here. I find what gives me the most lift is to get my hair done with highlights and a trim. I lost most of my hair for a time and had to wear a wig. I loved the color of the wig. I have very dark brown hair and so did it, but it had copper and red highlights in it. So many people didn't know that it was a wig and now that my hair is back, I highlight it the same.
For holiday my son gave me a spa gift certificate. I used to get massage's when I worked and haven't had one in a couple of years now and that's what I'm going for. I can hardly wait! Usually I don't go out without makeup on, but some days if I'm not feeling well, and I know I'm staying home, I'll still take the few minutes that it takes and put some makeup on, just so that when I look in the mirror, I don't "look" sick. It just seems to help on "those" days. Hope to see some more suggestions here. - Cheers to all! - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#6 Amanda Thorpe

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Posted 26 January 2011 - 05:33 PM

I love my make up and I love having my hair done, I've always been a girly girl. I have been wearing make up for nearly 30 years and during that time I've got in a lot of practice which is just as well as these days I have to create a top lip as part of my make up regime! :girly1-by-lisa-volz:

As fatigue is an ever present issue, if I have an early start I actually put my make up on the night before, it's a slow process because of my hands and the fact that I have to create a mouth and most of the time eyebrows! Foundation, concealer, powder, blusher, eye shadow, eyebrow make up and lipstick all goes on the night before and trust me it stays in place perfectly. I am a long established napper so I am used to sleeping with full make up and not smudging it. When I went into hospital for my pacemaker I knew I wouldn't be up to putting on make up whilst in hospital so I put it on at 5:00 a.m. Monday morning and it came off at 9:00 p.m. Tuesday evening when I got home, it was still perfectly intact.

I recently had my teeth whitened, via my dentist, to give me a little pick me up. I want to get my eyebrows tattooed as they have a habit of falling out and I get fed up with filling them in but I know tattooing is a no, no with scleroderma. :angry:

Since scleroderma I have had issues with puffy eyes and I could use a good, safe product to help reduce puffiness, please pm me with any suggestions.

Take care.
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#7 ladyhawke

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Posted 26 January 2011 - 05:58 PM

I just remembered something and wanted to share this with you all.

Years ago, I knew this wonderful older woman named Cathryn. She was a very proper woman. In her older years she started to wear makeup. She looked at me one day and said, "You know, I never wore makeup when I was younger. I didn't need it. But when the barn door needs painting..."

Usually when I'm putting on my makeup, I think of a barn door <sigh> Anyway, just a conversation from years ago, that has always stuck with me and I still find funny. She was an amazing woman.

Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#8 Lynnie

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Posted 26 January 2011 - 07:45 PM

This thread is a very good one and raises a valuable point :emoticons-yes:

I have always loved makeup and clothes, and "making" the best of myself. I am not a skinny jean, I'm a rounded woman with curves :VeryHappy: but I like to dress nicely and have my short blonde hair done in a nice striking easy care "choppy" cut. (which is suffering a bit with the thinning issue at moment) and doing my makeup. I still work two days a week in a hospice, and it helps me to make the effort each day to "put myself together", not in a vain way but as a self respect thing! And in my work for my patients to see that even me with a chronic illness can look well and smart.

My husband and people who know me still say "Lynn you're still a strikingly attractive lady," makes me feel fabulous.

Any of you who want to know any of the products I use that help with moisture and comfort, I use a range that's completely natural with no parabens. You can PM me as I'd be happy to pass on the information.

For me personally, if I give up on myself and stop making the effort to take care of myself it would be saying, "Okay, scleroderma has won." And that, for me, is not an option :VeryHappy:

I believe in doing whatever makes you feel good girls!! But keeping within the bounds of being sensible to our issues, surgical procedures would definitely be a no no for me, too. :happy-day:

Hugs to all and keep it together :VeryHappy: ,

Lynn

#9 BlueJeen

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Posted 26 January 2011 - 08:13 PM

Thanks for all the wonderful replies - so great!!! :jump-for-joy:

#10 judyt

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Posted 26 January 2011 - 11:34 PM

Hi Girls,
Yes this is a great thread. Last winter when my husband and I went to Queensland for a winter break I was really looking forward to the warm weather and Ian was keen to go out on the Great Barrier Reef because he had never done that (I have).

So on the day he went off on his $200 trip I went across the road from our accommodation and treated myself to an equivalent value of pampering. I came away after a full leg wax, pedicure, manicure and facial feeling ever so much brighter. Like Joelf I have troublesome varicose veins which started to show when I was only 22 and of course now I know why - Sclero! Anyway these days I wear thigh high support stockings and have to take good care of the skin on my legs. Having a good leg wax is vital for comfort and a pedicure helps no end too because I seem to have cuticle problems on my toes as well as fingers. Now that my vision is not what it was I have to get my brows done too.

I have been thinking lately that I should be more consistent with makeup too because as somebody just said - when the barn door needs painting!! I will remember that with a chuckle in between creaming my legs, putting on my stockings, blow drying my hair. It takes me at least 40 mins these days to get from bed to breakfast. Just as well Ian is good at getting the breakfast going or we might never get fed.

Keep up with the good tips - they make excellent reading.

Judyt