Tuesday, April 22, 2014

Cleansing the soul and a larger than normal mini-flare...

First off - the last 2 days I have experienced a larger than normal mini-flare.  Can't call it a true flare in my opinion as there is no redness, swelling, or ooze.  I just had more than normal itching and irritation to more than one or two areas.  Plus my typical mini-flare lasts not even a few hours anymore - yet this has lasted 2 days and finally died down this morning.  I think it may have had to do with the extra stress I experienced the last few days.  I will post pictures later today or tomorrow.  I do not see this as a step backward as the skin is already starting to heal and it seems to be healing faster than normal.  So I will have to snap some pictures soon!  Areas affected:  neck, top of chest, fingers, forearms, wrists, and right ankle.  My hands were already irritated as I made the mistake of doing dishes 4-5 days ago as I was giving my kids a break from their chores.  My hands itched horribly within an hour of washing dishes and only calmed down last night.  I did quite a bit of damage to them with all the scratching but compared to how they have been in the past, they really don't look too bad. 

As for my previous controversial post - all I can say is I thought long and hard about the comments - especially those from Kristina - one of ITSAN's board members.  Again, I did not write this post in haste or as a knee-jerk reaction.  I am all too aware of how hard the volunteers have worked to get ITSAN going and spreading the word about TSW.  While I am grateful for their message, I cannot agree with some of their policies and their belief that only time heals.  This is a big thing for me as when I first joined the forums, I searched frantically for an answer to help speed up the process of TSW.  I used topical steroids for 30 years and I felt my "sentence" was too long and to be honest unnecessary.  I had suffered so much already - I couldn't imagine suffering on and off for 3-4 years.  I looked on everyone's blogs and was horrified by what I saw - the suffering was horrendous.  I felt completely hopeless that the only answer was time.  I was told time and time again that at least I have my answer and I just needed to be patient and eventually I would heal.  I even repeated that message many times to those new people who appeared so hopeless.  This did not sit well with my soul.  Any spiritual person will agree that this is not a good feeling to have.  While ITSAN opened up their forum to having an experimental treatment page, it still in my opinion did not change their stance.  Even before I found out about the MTHFR gene mutation, I was still perplexed on why they were not being more aggressive in finding an easier way through TSW.  Dan's moisturizer withdrawal "program" would have been a HUGE asset to ITSAN and the people dealing with TSW.  Yet instead of choosing to work with him and figure out a way past their differences in opinions, they just banned him.  I know there is more behind the story than that, but working together instead of against each other can only help.

So my decision to leave was not based on the donation thing alone - it was something I had thought of many times for many months.  And it was based on principals that I felt too strongly about.  I plan to branch out with others on creating another website and/or forum where ideas can be freely shared.  This is not something people will have to make a choice on - there is no choosing sides.  It will be open to everyone.  Again, ITSAN has a very important message that needs sharing - myself and quite a few others just believe that another message needs hearing as well.  This will only benefit those suffering with TSW - our main goal is to help alleviate that suffering as best as we can. 



  1. I totally agree, the more the word gets out about TSW the more there will be further support groups and communities and that can only be a benefit to us all. The more people can share their experiences, share what works for them the more we can hopefully prevent further suffering.

  2. Tracy, in reference to what you said about me "I know there is more behind the story than that, but working together instead of against each other can only help". There really isn't much more behind the story than that. All I did was privately email Joey several times over a period of a few weeks pleading that Itsan stop telling people that nothing heals other than the passage of time. I explained how the placebo effect works and what I saw in peoples blogs. I told her I felt people need to feel self empowered. Things like that. Constructive things. Most of my emails were met with me being treated like a child that didn't know what I was talking about because I was not a vet and hadn't experienced tsw for as long as the vets had. Many were kind exchanges too though to be fair to Joey. I've always respected her and feel she has been misled and taken advantage of by certain people. And way overworked. That is just my opinion. Everything I say is only my opinion.

    But Itsan would not budge. After a while Joey replied to me and quoted Itsan policies stating that members can not attempt to contact staff or owners in any effort to effect policy changes. I pointed out that the policy contradicted itself by stating to email the owners instead of posting these things on the forum, and the policy was immediately changed to no longer say that.

    After being ridiculed, discredited, and marginalized on a public forum for a couple months on my views on healing and MW I finally had enough and so when the info came out of the Japanese conference 6 weeks after I did my own MW stating the same thing I had been saying for 6 weeks and being ridiculed publicly for, I sent a very long private email to the board telling them that it confirmed what I had been saying all along and I demanded a public apology for the way they treated me on their public forum. I also demanded they admit they have been wrong and adjust their policies. They immediately banned me. Nothing more, nothing less.

    I waited for almost 4 weeks to see if they would try and patch things up but nothing, so I then began to talk about my experience with Itsan on my blog and started prodding other people on their blogs to try MW. Keep in mind I gave financial support, offered to work as a volunteer, tried to set them up on an eBay charity program, made many meaningful and informative posts on their forum, showed them in real time how to do MW, and explained in detail why it was necessary, etc etc. I was cast out from everyone like a piece of garbage after what I did for them because I would no longer stand for what I perceived as them causing more harm than good. To this very day they have made no attempts to contact me and try to patch things up. It's far too late for that now but they had many months to do just that.

    1. Dan....it really is such a sad thing given how much you have helped people. I had been on a break from the forums I think during the time you were on trying to get t hang en word out about MW. ...I'm glad you were persistent as it helped me dramatically and still does. Will be contacting Andrea next via email. Hopefully we can get things started soon. :)

  3. you are welcome on http://www.reddit.com/r/TS_Withdrawal and http://www.reddit.com/r/eczema

  4. Tracy,
    Your children are beautiful! I know mine really encouraged me (as well as my very supportive spouse) throughout last summer and into the Fall and dreadful Winter months...but I am on the other side now as are you! I look forward to whatever new site you put together. Please include me. Off to workout now. Back at my normal workout patterns, despite itch attacks afterwards that don't last too long. Still hate taking showers--and activity I used to love. Using a sparse amount of moisturizer now. Email me. I had a massive infection last week I want to tell you abut (not publicly.) Be well!