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Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by summersunny on March 27, 2017, 01:40:42 PM »
Hi burning hands, I'm so sorry you feel that way about yourself. Remember it isn't the real you, only a masked version which the steroids have made of you. The real, chatty you is still under there and will come back when your body tells it to. It's so, so hard, I know but you can fight against it and when you beat this poison you'll come out much stronger. I used to be similar, I wouldn't think of going out and chatting to guys, although I've improved alot the experience has still left me very withdrawn. I'm not healed but much better. It's taught me to value health and that's more important than anything In the world. No one or anyone should try and compromise it. Take care and keep strong.
Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by NBWB on March 27, 2017, 12:53:14 PM »
Burning Hands,

I can certainly empathize!  Am at 49 months now.  Skin everyplace else except my hands is pretty well healed, though a bit dry and scaly in spots.  Hands, where I used TS the most for 30-40 years, still flare occasionally, as they’re doing right now.  When that happens, I turn to my trusty 50:50 solution of Bragg’s apple cider vinegar and filtered water, which is antiseptic, calms the itch, and facilitates healing.  I also apply The Home Apothecary’s zinc balm (available on Etsy), which achieves much the same result and moisturizes at the same time.  When the cuts become pronounced enough that I fear they might be vulnerable to infection, I don white cotton gloves under disposable nitrile gloves and wear them everywhere, inside the house and out in public.  Not only do they hide the appearance of my hands, but they offer protection and make my hands much more comfortable during big flare-ups than when they’re “naked.”  The gloves also offer sufficient freedom of movement to enable me to tackle just about any task.

At this point I realize that my hands might be vulnerable to occasional flaring forever, but I’ve accepted that possibility.  They’re still fragile and react to various stressors easily.  However, over the years I’ve dealt with TSW I’ve been blessed to find tools that enable me to treat the flare-ups pretty effectively, and for that I’m extremely grateful.

My biggest corticosteroid-related issue remains the extensive damage the steroids inflicted on my gut.  Healing is extremely slow-going, resulting in the need to adhere to a very restricted diet and the inability to travel, but I trust that eventually my gut will be restored to good health.

When discouragement sets in, I remind myself that God knows what’s best for me and has designed a plan for my life.  It’s different from the plan I had crafted for myself, but in the eternal scheme of things, His plan will lead to a far more satisfactory outcome than any plan I could have envisioned for myself.  Trust that He knows what He’s doing with your life and that you’re doing the right things in toughing out TSW and right now devoting your attention to helping your parents at a critical time in their lives.

One of the silver linings in my own experience with TSW and the limitations it has imposed upon me has been an enhanced capacity to discern, appreciate, and savor blessings in the tiniest of circumstances.  Best wishes as you, too, allow your own divinely customized trials to temper and refine and mold you into your best self.
Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by AYID on March 27, 2017, 07:59:04 AM »
I know of someone that almost died after suddenly stopping acupuncture, because his cortisol was destroyed. The practioner had been putting it on the needle in order to have "magic results." Was one of those Chinese places where they make the "herbal" creams that contain steroids.
I feel for you..,My hands were the worst part of my TSW journey.. They were completely scabbed, cracked, bleeding, swollen etc.  Looked absolutley horrible.  I had to work through all of this.  After 2 years, I only have 1 patch on my palm that is healing slow.  The rest of my body is 100%.  No magic potions or tricks.. Only thing I did is moisturizers. (which made things worse at first).
It was exteremly difficult to do anything when your hands are this way. Changing diapers, putting hands in pockets, going out in public.  I was always wondering if I would ever heal..but I did.
Hang in there..not much option at this point anyway.
Long Term Vets Still in TSW / Wheatgrass
« Last post by Paul b on March 27, 2017, 05:39:42 AM »
Hiya I'm coming up 4 year now off tsw and I've been flaring pretty bad lately. Last year was the best I've been in a long time but since I've gone back to work after Xmas I've been breaking out a lot. My girlfriend came across wheatgrass powder which I've been taking for a week now and the results have been unreal. I'm mixing a tablespoon of powder with water and making a face pack which I leave on for 15 mins. Then drink the rest. I've order some wheatgrass moisturizer cream which I'm using on a nighttime. I'm over the moon with the results but worried will I have to rely on this all the time. I don't know a great deal about this product and I don't want my skin to get addicted again considering I haven't used anything for 4 years now. I would appreciate any advice you could give me. I feel and look great at the moment it's like a miracle cure for me. so was steroids and look what happened to me there
Methods of TSW Comfort / Re: Cyrotherapy?
« Last post by daniellephoto on March 27, 2017, 03:43:20 AM »
Just wanted to chime in on cryotherapy. I know it is increasingly popular since Lebron James and other athletes swear by it for quick recovery, pain and inflammation.

I have been getting full body cryo twice a week for almost 2 months and it's amazing. When I had my first treatment, it stopped a flare that I was having and after the 3 minute treatment, rough skin flared areas were flat and soft and my itch stopped for days. It's not cheap and I wished my medical insurance paid for it. I have a monthly package that cost $199 a month which entitles me to 2 full body treatments a week (8 total). Well worth it for me, since I benefit in other areas. In addition to the red skin thing, I benefit from back pain relief, I sleep much better and a boost in my metabolism.

I am on the dupilumab study drug, but you still get flares in spite of clean diet and being able to pinpoint mostly all of my allergies. Just not the hell based ones we are accustom to.

I also find that this drug causes me to get frequent cold sores if I don't take lysine everyday and i am stressed. I did a facial cryotheraphy session when I had a cold sore breakout and it stopped the spreading in it's tracks so I can use my tea tree oil cream and take lysine to clear it up quickly.

Please note, I only have a shower in my condo, so no ice baths for me. Even so, I would do cryo over ice baths, since it is just three minutes in the freezing cold. I can't stand being cold. It does go by fast since your attendant talks to you. The spa location I go to has spot treatments too, so I don't have to get full body. I prefer the full body since I feel really good afterwards.

Of course do your due diligence by researching it and make up your own decision to try it. Spas are popping up all over and you can find cheap packages on Groupon to try it. The initial package I bought on Groupon was 5 treatments for $89 (with additional savings coupon).

I am going on 4 years in this madness in May.

Anything helps because this thing can bring you to your knees!

Happy healing.
Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by readytoheal on March 27, 2017, 02:11:24 AM »
AYID..where have you heard that? I am a licensed and board certified acupuncturist. Doing something like that would be completely illegal and a practitioner would most likely lose their license and ability to practice by doing something like that, especially without the patient's knowledge. I have never heard of that in my profession.
Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by AYID on March 26, 2017, 11:20:17 PM »
Ready to heal: I just want to issue a warning: Some acupuncturists put cortisone on the needles! You need to be really careful!
Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by Burning Hands on March 26, 2017, 10:54:59 PM »
Thank you, everyone. I'm just really depressed about a lot of things, and a flare is something I could have really done without! I know you all understand.

The first year of TSW was brutal. My hands looked like they were dipped in acid. After that year, my hands improved. I just don't know how much they have improved since then. Like many of you, I truly thought it would be over by now and my hands would be back to normal.

This really and truly is hell. Life if hard enough without this.

Long Term Vets Still in TSW / Re: 3.5 years in and I've hit a wall...
« Last post by readytoheal on March 26, 2017, 08:56:00 PM »
Oh Burning Hands, also acupuncture can be amazing for anxiety and depression. If you dont have insurance to cover acupuncture, and regular prices are too high, there are community clinics in many places now that offer awesome high quality acupuncture for affordable 15-20 a treatment! I go to one almost every week, and it has helped me tremendously with stress, anxiety, depression.  Just let me know if you or anyone else reading this wants more info.
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