Saturday, February 1, 2014

Quick Post

I know I said I was going to stay away and give my hands a huge rest, but typing with tips of fingers is slow but manageable.

Just wanted to share pictures of my macerated hands after 2-3 days of using oil/fat on them covered with gloves. I know I shouldn't have done this, but desperate times leaves one brain foggy! I am now dealing with moisturizer withdrawal again....very painful and tight hands! OUCH! I have not had this much pain since my first 6 months! I wish I could take it back, but I can't.  So I have taken this week off to see if I can heal them to a point where I can work again.

As for my next kept saying I really should  go to Florida for a week to get some sun and ocean healing.  Well the price tag was too much for something that may or may not work at this point. I am 100% sure it would help most of my body, but not so sure about my hands given just how bad they are.  And it's my hands I need help with as the rest of my body feels like it is almost healed.  So instead here is what I am planning.....

Ordered a facial UV lamp....not as strong as the tanning beds, but should be sufficient.  3-4 times a day I will soak hands in dead sea salt water for 20 minutes. Then without drying or rinsing, hold hands in front of UV lamp for another 20 minutes. This should mimic the beach as much as possible in a home environment.   I also plan to do this 3 times a week full body....take a DSS bath, pat dry, get dressed and go directly to tanning salon with the salt water not having been rinsed off.

If anyone has tried the above technique please comment and let me know how it worked!

Now here are those lovely pictures:


  1. Please be very careful.
    About 40 years ago I spent a month camping on the banks of the Dead Sea. Maybe I got too much sun, or (more likely) I went in the water and did not rinse off well enough and then got too much sun.
    By the time I left, my skin was a mess. I went to Greece and the doctors there told me I had "sun poisoning" and probably gave me meds--I don't remember. I do remember that I had to sleep straight through a couple of days before I felt better and I kept my body out of the sun for quite awhile afterward.
    I think you should be very careful about going "in the sun" without washing off the DSS first.
    IMO the minerals,etc are great for your skin, but you don't want to "bake" them in.

    1. Thank you Rose! I don't get my bath to the same concentration as the Dead Sea....the regular ocean which is not as concentrated burns my skin when its raw. I get my tub water to a point where there is slight burning only so I am basically bathing in a very dilute dead sea salt bath. Every time I have ever been to the ocean my skin always cleared up. Tanning alone or DSS baths alone never did clear me up like going to the ocean so I want to mimic that as much as possible. I appreciate your concerns and will test this out with only my hands...will save the full body experiment if I flare on a larger part ofmy body in the future. Thanks for bringing this to my attention. :)

  2. Dear Tracy, so sad to see how raw your hands are looking. You are a real trooper typing these updates despite your painful fingers.

    Be assured that your blog readers are thinking of you and wishing you well, hoping that this current flare will be very short lived indeed.

    I'm glad to hear your body is doing well. On another note, have you heard from any others who have tried the gene testing and had results back yet? I know a few were trying it out. I am really excited to see whether patterns start to emerge. Hopefully this will bring us one step closer to finding answers for this TSW beast.

    Thank you so much for sharing your experiences as you ride this roller coaster. Much love to all out there suffering right now. X

    1. Thanks so much for the love my friend! Much and appreciated!! I am so very frustrated....feel so good and have so much to do yet I can't use my hands! Blast it all!!
      As for the gene mutation - so far about 3-4 people are getting it this week that I know of and at least 10 more have toldme they plan to ask their doctor in the next few weeks. The results take 2-4 weeks so we are in the waiting period. Some people may have already gotten the test but are waiting to say something when the results are in.
      I too am very anxious to hear other people's results. Some have shared other medical problems with me that point even more to the gene mutation. Hopefully this month brings us closer to understanding TSW more!

  3. I am wondering if this test is available free in Canada? That would be a bonus. Thank you for sharing your journey I have begun my own and boy is it turning out to be scarey!!!!!!!

    1. I know it is available in the US for anyone,but only available to certain people in the UK (like pregnant women)....not sure about Canada. Hang in there....make sure to read as much as you can on the forums and other people's blogs....I did nothing but read for months and I still had's scary and overwhelming, but you can do this!