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.