Thursday, November 21, 2013

More good news to share and looking better by the day (pictures!)

I received this email last week and wanted to confirm with the recipient that I could paste it on my blog - I only changed the age of the TSW warrior as to protect  identity!  I may be willing to go out on a limb but I will always protect any and all identities - AND I would never paste any private emails on a public blog unless I received permission first.  So with great excitement, I will provide the email that gives some hope in my recent endeavor!

"hi tracy. today I read your post about supplements. I have a (X) years old in month (X) from TSW it has been very difficult , I haver tried some supplements with him with not much luck but last week I began sulfur ionic  form eidon ( very similar to MSM) and since that I noticed the oozing has stopped a lot, and the swollen also. he is in better mood, the itching is worst but the skin is improving. the other sup that i tried was vitamin E and it help soothing the skin but I think that he is more red when taking."

Just an FYI: this warrior is less than 6 months into TSW.  The bolding was added by me for emphasis!  As you can imagine, this has helped me to be more excited about all that I am working on.  There are a few other people who privately email me about starting the supplements as well.  It took me 7-10 days to see any improvement so maybe in a few weeks we will have more good news  - keeping my fingers crossed!

Going to personally get the testing done.  Already put a phone call into my ND today to find out about getting the gene testing.  I would try 23 and me but NY will not allow me to submit my DNA from NY state to an outside lab....silly NY (I have other choice words, but I try to keep those to myself!). Will keep you all posted!!!  If I test positive, then I plan to start asking for donations to have a number of TSW warriors be tested....I plan to put my money where my mouth is.  I will personally make a donation of $1000 to help with this.  I will petition genetic testing labs for a reduced price on that specific gene mutation.  It may reduce the costs significantly if we are only looking for one gene mutation.  I will also get a lawyer to draw up a release form stating anyone getting tested does so at their own risk (haha) and the results are to be interpreted only by their personal doctor.  And so forth. It will take 4-8 weeks for my own results to come that time I am hoping to hear back from a few who have tried the supplements to see how they work.  Please keep in mind that with the variations in the gene mutation, the supplements needed may be slightly different....apparently a few of the other variations do not convert B6 and B12 into their active form as well as folic acid.  Could explain why many people end up getting B 12 shots. (Things that make me go hmmmmmm).

OK - was supposed to work today but did not sleep a wink last night so hubby went to work for me (he's so sweet).  I think I have taken Benadryl for too long and it just stopped working.  Hubby suggested I take one of his left over valiums (from his car accident).  Neither of us do well with heavy medications. So I tried 1/4 of 1 pill and was awake the whole night!  It made me feel awful!!!  Lesson learned! But even with no sleep my skin continues to look better! However I think my face looks a bit puffy.  :p

Left hand and arm looking better!

My face feels baby smooth!!!  Loving it!!!

Other than the slight dry patches, my feet feel baby smooth as well!!!

Thinking once those few sores are healed I may just go get waxed (instead of shaving) - waxing actually always kept the eczema off my legs as long as I went every 4-6 weeks. 

Other than some dry skin and left over sores, there is no redness at all on either arm - redness was always evident at the wrists. No more!  :)  (at least for right now - always the realist!)

Top of right hand and arm - just dry where my reptile skin used to be!  These are taken in the same lighting - same camera - and about the same time of day as the other pictures from the last few weeks.  


  1. Looking fabulous! The skin on your face has improved so much. Really happy for you. x

    1. Thank you my friend!!! Hopefully I can get my hair to do something after all these months of just being "up". :)

  2. Interesting info on the supplements! On the Valium, I used it the entire time during my tsw as a sleep aid and it worked great for me. I don't know how I would have made it without it. Tried innermezzo once and it did nothing. Hydroxyzine seems to help if used sparingly as in once a week. The Hydroxyzine only worked for me if I took 40-50mg before bed but I didn't like the effects of waking up with a pool of drool all over my bed. Strange drug. Anyway, Valium works best for me. I started out with 5mg at night. If you took a quarter of a 5mg tablet I can understand why it didn't help. That's not enough to help anyone fall asleep unless they are very young and under 50 pounds in weight I would imagine. I usually would wait until I went to sleep first, and waken after an hour or so, and then took it to get back to sleep. You know how that is in the first couple months or so.

    After building a tolerance to it I upped the dose to 10mg, and then to 15 and finally 20 at a time. Not every night, but often every other night. I used Hydroxyzine once a week, and medical cannabis brownies occasionally so I wouldn't have to rely on the Valium every night. Now, my sleep patterns are nearly normal again so am weening myself off the Valium slowly an not taking the Hydroxyzine any longer.

    I can sure tell whether one is moisturizing or not by looking at their pictures! I can see you are not and am happy to see that. When I look at others and see that shiny skin with skin splits after many months, or even after a year of tsw, I just want to scream. Godspeed in your healing!

    1. Thank you Dan!! I am terrified of Valium and all those drugs! After all 3 C-sections I had a ton of Hydrocodone left over - they tried to give me Percocet which is a bit stronger and I refused. I would take 1/2 a pill of pain med and be able to function for a few hours. I deal good with pain and I only take things if absolutely necessary. The valium is not necessary (at least not yet). Going to try melatonin tonight, weaning off the raw adrenal slowly, and even some homeopathy sleep aid before considering valium again! But everyone has different tolerances and tolerance is just not there for the stronger meds I think. Maybe it's just my own personal issue interfering with it all :).

      I know what you mean about the moisturizer! Wish I had heard about it in the beginning. I tried to go without a few times because I would itch horribly an hour after applying anything....but couldn't deal with the pain. But a few months ago I was in a better place (relatively) and I had seen the evidence so I went for it and am so glad I did!

      Hope you are doing well! Will catch up with your blog in a few days after my stretch of work coming up! :)