Author Topic: 32 Months in  (Read 295 times)

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Offline Carrie223

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32 Months in
« on: May 18, 2017, 08:38:37 AM »
Hello Everyone,

I am feeling great.  I can sleep all night!  Last parts to heal is my neck (tightness "strip" under my chin) and my wrists->hands.  I still have some small patches of elephant skin at the bend of my armpit, bend of my elbow and wrists->hands.  Once in a while my hands swell around my fingertips/top knuckle area but for a short time.  I still have not had a manicure but I have had a pedicure and it felt fabulous.  My feet are totally healed.  They were a mess for so long.  I wake up every morning and look at them.  They are so "new" looking.  It's the little things in life that keep you going.

My face has some blemishes but otherwise I am wearing makeup and getting out.  I just finished a certificate program in technical writing so I will be starting a new job search.  I left my last job - mostly to take care of my father who has had some serious health issues - so, with me being the mess I was it sort of worked out.  My employer was very sympathetic and I shared photos with them of my situation back in 2015.  I still could not get any form of disability.

I mostly used and still use petroleum jelly (vaseline) and wash with Yardley soap, lavender scent and oatmeal and honey.  Ponds cold cream to remove makeup.  A little witch hazel to calm any inflammation. It worked for me. I wear gloves when cleaning and washing dishes.  I find I was extremely sensitive to cleaning agents and had to hire a cleaning lady to clean - ammonia or bleach would send me swelling up like a red balloon.  I am over that but still very cautious.

I realize our situation arose from steroid creams, but I believe eczema is an allergy.  I notice I am (have become) really skin-sensitive to beer and wine and stay away.  Yeast also.  I find I feel best on a high-protein diet.

I'm glad to share photos if anyone is interested. 

This was/is a long road and unlike anything I have ever experienced.  It was the worst.  But what kept me going was knowing there were/are others going through this and ITSAN, and reading stories of healing.  Anger also keeps me motivated as there are still so  many doctors prescribing this crap.  I realized that many doctors don't have any answers, but what angered me most is their unwillingness to listen.  And they don't apologize.

My eye swelling caused me quite a bit of grief, but they are "back to normal" and I am thrilled.  I was so distraught at one point I visited a plastic surgeon because my eyelids looked so bad.  It took many more flares for this to subside.  I don't think I need plastic surgery anymore.  I may get it though as just a little tug-up to keep me bright and awake.  Who wants to look droopy?  I'm also at the age where things start to droop.

Yours in Strength, Fortitude and Healing,

Carrie
Carrie223 stopped desonide, fluocinonide and betamethasone valerate on Sept 1, 2014 after using intermittantly throughout teen years and a few months after mom passed in 2013. I have RedSkin Syndrome now and realize I had been in withdrawal for months and did not realize it until I found ITSAN.

Offline AYID

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Re: 32 Months in
« Reply #1 on: May 18, 2017, 10:09:54 AM »
Carrie, great to hear that you are getting there and feeling so much better!

Just a note about beer and wine: Alcohol is a vasodilator. In other words, it opens up the veins, increases the blood flow, and bingo! rash.

It seems many people with TSW cannot tolerate alcohol. Before I realized what TSW was, I'd had literally a shot of vodka and went full-face red within three minutes. This happened twice.


Offline AYID

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Re: 32 Months in
« Reply #2 on: May 18, 2017, 10:14:57 AM »
Some articles from a quick search about vasodilation mechanism of alcohol.

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Offline Leeboy80

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Re: 32 Months in
« Reply #3 on: May 18, 2017, 11:16:21 AM »
Carrie,

So glad to hear you are doing better. This encourages me as I am in hell currently in month 27. And I tend to totallly agree with Rapaport on the food avoidances being pretty meaningless, but alcohol absolutely causes me issues, in my experience.

Offline Carrie223

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Re: 32 Months in
« Reply #4 on: May 19, 2017, 08:57:59 AM »
Yes, I find beer and wine especially inflame my sinuses - so there is the sulfites and other stuff.  Easier to continue on healthier choices, but during a great flare, it did help keep me calm and somewhat sane!   I'm not a big drinker but yesterday it was over 90 here in Massachusetts, and I did have a margarita with no marked change.  Speaking of high temps, I did break a sweat and did not break into a full crazy itchy rash.  Which means I can start exercising again.  I haven't exercised regularly in a couple years, and I feel it and have put on weight. 

Further, I am cautiously optimistic and don't want to "tickle the monster" with anything too outrageous.  I cook all my own food, and do not eat out anymore.  I'm too worried about the food and whatever they are doing to it.  There was a law passed an the US is now going to buy chicken from China.  I know the restaurants keep food prices down because the don't buy local seafood either.  This worries me.  I buy local whenever I can.

Another mention - I lost quite a bit of hair.  I can't say if it was from stress of everything, or the steroids but it happened over the course of a month.  The brush was just full of hair, more and more.  It's scary but I knew this could happen.  Doesn't make it easy.   But, I did use the supplement Viviscal and it does work and there are formulas for both men and women.

On another note regarding allergies.  There has been significant talk about allergy cures here in Massachusetts for the last few years.  There is a business called AllergyArt  You are not allowed to view links. Register or Login in Lexington, MA and the woman (Amy Theiringer) has a 4 year waiting list.  A local "celebrity chef" Ming Tsai (former owner of Blue Ginger in Wellesley, MA) brought his son who was cured.  I'm not advocating or promoting - just putting it out there.  If you do a google search there are available articles.  I think the website was taken down due to the waiting list.  Not sure on that.

I will have more updates until I am fully healed.  I don't believe I have any true answers and Dr. Rapaport's wise guidance helped me immensely through his video interviews and website.  There needs to be more Dr. Rapaports in this world.

Cheers,
Carrie
« Last Edit: May 19, 2017, 11:55:27 AM by Carrie223 »
Carrie223 stopped desonide, fluocinonide and betamethasone valerate on Sept 1, 2014 after using intermittantly throughout teen years and a few months after mom passed in 2013. I have RedSkin Syndrome now and realize I had been in withdrawal for months and did not realize it until I found ITSAN.