Wednesday, January 22, 2014

Too Late Now For Desperate Attempts To Discredit The Benefits Of MW - Sorry!

Well, well, well! It seems Joey still doesn't get it and is still trying to discredit myself and others who have shown the benefits of MW. She ignores all information on how moisturizing damages the skin barrier, inhibits healing, and very possibly slows recovery. She still ignores the fact that for most people MW makes their TSW journey a much more comfortable journey than it is via moisturizing. Now she has taken to attacking me and others on her blog and spreading more confusion. It is Joey and people like her that is confusing the issue, and the way she worded her post and and her question to Dr. Fukaya shows just that. It is very apparent that she does not understand the issues. Here is her recent post on her blog. Below are two comments I posted in response to her attacks and her obvious general lack of understanding, on her blog that I know she won't publish. So, I wanted to put them here so everyone can see both sides of the story instead of the one side that is so commonly shown by people like her. Sorry Joey, and the rest of you long time suffering vets. The cat's out of the bag now and you won't be able to stop people from finding comfort any longer. There are enough people doing MW now, and enough who are having success at it, that you will no longer be able to fool the majority any longer!

UPDATE 1/27/14: As noted by Leslie deep into the comment section of this post, Joey has deleted her post so the link above goes to a dead page. She made a new post on her blog saying...

"I deleted my last post on moisturizing or not during TSW because it was written during a moment of knee jerk reaction to complaints from bloggers about feeling pressured to stop using moisturizer."

Firstly, one has to ask themselves why she didn't leave it as is and update it? Could it be because she also had a long rant on there about how moisturizing isn't possibly addictive and Dr. Fukaya's answer didn't fit in with her complete lack of understanding of moisturizer addiction? Secondly, I have never pressured anyone to stop using moisturizer. I don't even know how that is possible. I have only posted occasionally on others blogs about the benefits of not moisturizing. Thirdly, if bloggers have contacted her about me advocating moisturizer withdrawal on their blog you have to ask yourself what was the motive behind that, and why would they complain to Joey and not to me, or just not publish or delete my posts? I'm not a member of ITSAN and these blogs are independent of ITSAN.

Her replacement post further shows her clear lack of understanding of the simple fact that we don't all have severe burn unit type cases of TSW, and how not using moisturizers can be extremely beneficial for many of us who have milder cases. It seems Joey is running more of anti MW crusade rather than a true support forum for TSW sufferers. Why someone would complain to her about my advocating the benefits of not using moisturizers is very telling of the kind of dangerous group think atmosphere that exists on the forum. Joey is viewed as the "sheriff" and in the eyes of most forum members. She is also the ultimate authority on how best to deal with TSW in the eyes of the forum members. She controls what information is showed, what views are allowed to be expressed, and influences the conversation to reflect what she believes. The problem is, her approach is very wrong. But she is also reflecting the views of the entire ITSAN board, let's not forget that. ITSAN needs to find a more constructive approach if they truly care about people suffering through TSW, and not just in defending their outdated points of views on how to best deal with TSW.

UPDATE 2/4/14: Someone had inquired with me as to what Joey had said to warrant my seemingly personal attacks towards her on this post. This is unfortunate in that without Joey's original post where she viciously attacked my character, my post here appears like I am attacking her. I want to make it clear that I am not. I have spoken the truth, and what had actual happened since she wouldn't allow me to defend myself on her blog where she attacked me. The two posts below are copies of what I sent to Joey which she did not publish. Was I to just not defend myself? No, she left me no choice due to the egregiousness of what she did. She could have contacted me privately, which she hasn't done since banning me, and/or she could have published my response to her character assassination and allowed me to defend myself. I may have a few personal viewpoints expressed here and there, but please keep this all in context of what happened and what led to me writing this post in the first place. Joey replaced her "replacement" post again and took out the image she had of people "blowing their own horns", in effect making some things I had said to her in my response below even more confusing to people who read it now. I don't think that was the intent but that's the residual effect. Again, for people who didn't see her original posts before she deleted them, please keep this all in context. Reading the comments below this post from others will shed some light as well.


I followed up your question to Dr. Fukaya with what should have been asked. But no matter what he says, it seems some people misinterpret his answers and are not understanding him. So, if you don't understand his first answer you probbaly won't understand his next. He speaks in somewhat broken English and is from a different culture. But if you read carefully what he says you will understand what he says. The following are my two responses to Joey on her blog that I know she won't publish. She has already published a post by a pro moisturizing person which was done after my comments. So, even though I say I "know" she won't publish my comments on her blog, she may yet, but it definitely appears that isn't going to happen. And Joey, moisturizer addiction is real. The skin stops moisturizing when it is moisturized externally. There IS a short period of withdrawal before the skin "realizes" it needs to start moisturizing itself again.

My first post to Joey in response to her attack on me:
"Since your post is an obvious personal attack on my character I feel compelled to defend myself. You were very disingenuous, even borderline outright dishonest, and omitted key information in your question to Dr. Fukaya. You failed to mention people who have completed TSW in under a year via not moisturizing, and all the people currently finding good success, and you presented a distorted version of the truth. More importantly, you failed to mention my main thesis of MW making the journey much more comfortable to endure than moisturizing does. That has been my main contention all along, not so much that MW speeds up recovery, but that it makes recovery many times more comfortable. And this is a very important distinction since there is so much pain and suffering endured during TSW.

Why don't you ask him what his experience has been with the comfort factor for his patients that have not moisturized during TSW compared to the ones that have?

I hope you understand that in his answer he basically said that yes, MW speeds up TSW. He also said Dr. Sato believes in the method even more so. He eluded to the "hard landing", but if you were to ask him how long the hard landing lasts he will tell you up to 4 weeks at most. I think he has already written about that in his blog. His answer about admitting it is fruitless for others to refrain from moisturizer was also already given in his blog and by that he means people who want to use moisturizers and feel a need (addiction) should by all means do it that way if that is the way they want to do it. Again, all he is saying is yes, some people are addicted to moisturizing, and it's fruitless for them to attempt MW if "they" think "they" need them. Kind of like it's fruitless to stop TS if you think you need them. He goes on to say "Dr. Sato recommends disuse of moisturizers more strongly than me from his own experience."

2nd post
"Like DR. Fukaya told you "It's not complicated". So, why are you trying to complicate the issues? You obviously exaggerated your own use of moisturizers by saying you used very little when you and I both know that's not true. You made it sound like you've seen just as many people get through TSW via moisturizing as you've seen via not moisturizing (not true), and in general were very misleading in your comments to Dr. Fukaya. Also, you are misleading in saying that people such as myself advise others, and especially new ones to TSW, that no moisture is the ONLY way to help the skin, speed TSW up and prevent flares etc. The title of my most recent post on January 16th on my blog is "Clarification On Why Moisturizer Withdrawal Is Best For Comfort". NOT "Clarification On Why Moisturizer Withdrawal Is Best For Speeding Up TSW"!!

And your advice to people is still "Carry on in the way that suits you best with comfort and patience my friends". Well, that's fine except for the fact that the Itsan site and it's vets like yourself promote the use of moisturizing as THE way to find comfort! If you truly wish people to carry on in a way that best suits them then you wouldn't be promoting one method over the other. You would be neutral, and allow people to see all information available and encourage them to do what works best for them like DR. Fukaya does. Instead, you continue in your lame attempt to discredit the fact that MW is a much better way to get through TSW for "most" people.

As for blowing horns, I don't need to suffer for 3-4 years like you and your buddies to understand that MW makes the journey much more comfortable than moisturizing does. I experienced it firsthand as have others. There is plenty of research and studies available for those who wish to decide for themselves whether moisturizing is a better way to go or not. Your condescending and arrogant attacks on me and others only show your true nature. I'm not blowing horns, just trying to undo what damage YOU manage to do with your very definite lack of understanding of just about everything when it comes to healing.

You don't even understand what moisturizer addiction is and you made that very clear by what you said. And, as for flares many months or years into TSW. MW has little to do with flares other than if not moisturizing the flares are less intense and clear faster lol. The only one that should be embarrassed here is you my friend. Your clear lack of understanding of just about everything when it comes to TSW is appalling for someone in the position that you are in."

39 comments:

  1. Just a reminder for JOEY and the rest of you who seem to have either not read this or refuse to believe it. There are many other studies showing the same thing but this is a simple and easy to understand study which sums things up quite nicely.

    http://www.ncbi.nlm.nih.gov/pubmed/10086859

    Effect of long-term use of moisturizer on skin hydration, barrier function and susceptibility to irritants.

    "Moisturizers are often used in the prevention and treatment of irritant contact dermatitis. The present study was to determine whether long-term daily use of a moisturizer on normal skin would affect skin barrier function, hydration state, or susceptibility to sodium lauryl sulphate. Healthy volunteers used a moisturizer on one forearm 3 times daily for 4 weeks. The other forearm served as a control. Afterwards both forearms were challenged with a patch-test of sodium lauryl sulphate. Skin barrier function was evaluated by measuring trans-epidermal water loss and skin hydration by measuring electrical capacitance. Electrical capacitance was significantly increased on the treated arm during the treatment period. After challenge with sodium lauryl sulphate, transepidermal water loss was significantly higher on the arm treated with moisturizer than on the control arm. The results suggest that long-term treatment with moisturizers on normal skin may increase skin susceptibility to irritants."

    Now just imagine what long term moisturizing does to hypersensitive skin during TSW and you'll get the picture! As Dr. Fukaya put it. "It is not a so complicated problem". Joey talks out of both sides of her mouth when it comes to this issue. You can't have it both ways Joey! It's misleading to say "do what's best for you", and at the same time promote moisturizing as what's best. And that is exactly what you and the rest of the non healing vets have been doing, and continue to do.

    ReplyDelete
    Replies
    1. Joey tells Dr. Fukaya "My concern right now is that the ones who are less than a year into TSW advise others and especially new ones to TSW that no moisture is the only way to help the skin, speed TSW up and prevent flares etc. but I'm also seeing long-term users who no longer moisture and still get a nasty later flare of a week to months with redness, oozing and rashes after months of nice skin."

      Far from the truth. I have never said it was the ONLY way. I said it was the BEST way. Big difference! The only one I know of who has said it was the ONLY way ended up 100% recovered in 9 months lol! And again, there is no mention of comfort which has been my main contention all along. And, I have never said MW is a way to prevent flares! Again, not true! Is that the best you can do Joey? Have you not seen my many posts about my flares? Spending 3-10 years doing TSW is NOT what most people want to do, and you and your like minded friends experiences are definitely NOT something to aspire to.

      Rather than ask Dr. Fukaya direct questions like "how long does the hard landing typically last", or "does MW make one's TSW a more comfortable journey for those that choose that method", you purposely set him up with leading questions and comments designed to get the answers you were hoping for. You didn't get them yet you still think you did lol. You put him between a rock and a hard place by the way you asked him what should have been basic questions and then expect clear answers? You know damn well he doesn't want to alienate Itsan. It appears to me you purposely injected "concerns" and misleading comments in your question solely for the purpose of proving your point. A point you don't even acknowledge exists. Example: You end your triad with "Maybe you clarify more on this topic for those who "panic" over the moisture topic?" Panic? Give me a break! How misleading is that? There has been very little panic. But there has been a lot of open discussion, FINALLY!

      Dr. Fukaya's answers are not as difficult to discern as they may appear if one looks closely at his answers.

      Joey, the comment you did publish by Stacey, which concurred with you, shows what effect you have on people. If you look at her blog, she is now using several moisturizers, out of which at least two of them I have seen many controlled studies showing they damage the skin barrier in as little as 4 weeks. They have very toxic ingredients. Great job! see: http://itchyskinjourney.blogspot.com/

      Delete
  2. Have read her post.
    In terms of adding value to the TSW community, hers has none.

    Let people decide the best outcome themselves, our role is to share what we have been doing. We are practitioners, been there (on both sides, moisturizing and not), done that and knows what is best for our body.

    Please keep up the good work in spreading the message, it is important.

    ReplyDelete
    Replies
    1. Thanks Leslie. Waiting for Dr. Fukaya's response but he has been put in a difficult situation. Not sure how he'll respond to this. Still, no matter, we both know the score when it comes to this stuff.

      http://mototsugufukaya.blogspot.com/2013/06/is-moisturizing-really-help-to-cure.html#comment-form

      Delete
  3. he has posted a very favorable reply for MW advocates. I'll share his replies on my blog too. tks!

    ReplyDelete
    Replies
    1. Yes, although he was very diplomatic, he was pretty clear on everything if one reads carefully. Notice he said "initial hardness". Key word here is "initial".

      Delete
  4. I felt compelled to jump on my disused laptop to reply. Certainly I would never say MW is the only way to do TSW, but having done this three times, in my humble experience it was the difference between hell and mild discomfort. First two times never touched a moisturiser and aside from a few hard weeks at the beginning, I never really "flared" just felt fatigued for 9 months and itchy in spots. After 21 years of CONSTANT heavy steroid use. This third time around, I was healing, found itsan and started slathering on moisturizer. Instant nasty infections. Stopped the moisturizer and began healing. Around 6 month mark, still inspired by all this moisturizer talk, started it again. WORST experience of my life!! Red, peeling, hellish flares and progressively drier skin. My husband is the one who said, just get off the shea butter. Within 4 weeks my skin was strong. Now it's not just strong, or "calm" it is absolutely beautiful! So much that friends keep touching my face and arms in awe. The post by Joey is not only abrasive it is very discouraging. I have met several people in recent months, a male friend just last week, who have gone through tsw in a matter of months without even knowing it. These people don't blog and in the case of this friend, never ever moisturize. To say, that we will be flaring years down the line is not only inaccurate, it is very cruel. I can say with absolute certainty that I will not, since I did not the other two times. I also never ever moisturized before, during or after tsw. Itsan is making a spectacle of themselves with these sorts of nasty attacks. And I agree with Dan, I can think of no worse label than to be a TSW "vet".

    ReplyDelete
  5. I think what is important is for us to get the message out.

    I hope those vets can sleep well at night, when they advice people on methods of comfort that could potentially be iatrogenic. (not just in terms of moisturizer usage, but as well as other type of applications or supplements/pills and etc).

    ReplyDelete
  6. I wanted to start anew post subject on this but think I'll keep this one up for a while first. I don't want this one to be buried just yet. I just wanted to say a few things. If people find moisturizing such a comfortable way to get through tsw, then why the hell are all of you pro moisturizing people complaining and whining so much about how uncomfortable you are? I don't see any complaining or whining about being uncomfortable from the pro MW people!

    This is the only reason I bother to take my time to post my beliefs about the ill effects of moisturizing on others blogs. Believe me, I have much better things to do. Like tend to my own health for one thing! When I see people in tsw for many months or years and literally crying out for some kind of relief, it's difficult to not want to offer help when I can clearly see what the problem is.

    Also, if Itsan would just get their shit together in how they tell people to handle their tsw symptoms, I would not also try and catch people early on in their tsw in an attempt to save them from making the same mistakes I made when I was a member of Itsan. Any so called support forum for people going through tsw should never say the only path to healing is the passage of time, and to do whatever makes you feel comfortable when it comes to moisturizing. That is just my opinion of course. But I think a very valid opinion. And that is exactly what I told Itsan at the time, among other things. People who support their body's functions, and especially their skin's functions, surely can recover sooner if they do the opposite.

    What is needed going forward is for someone to open a different support forum so people have even more choices of meeting and sharing ideas and such. A true support forum where veterans don't push their agenda or belittle others for their opinions, but instead, offer meaningful support and information. At this point I have zero interest in doing it myself, or in helping anyone else do it. I am burnt out from many months of trying to effect needed changes. I hope someone else will pick up the ball when I go. It's only obvious that Itsan will never change as long as the same vets who reside there remain there.

    As for moisturizing. If it's bad for all then it's bad for all period. The idea that we are somehow different and we should moisturize if that's what make us the most comfortable is BS imo. A little sun is good. Too much is bad and burns you. Same way for moisturizers. Same way for ts. Same way for just about everything under the sun. It's not that complicated.

    It was just a few months ago that people would have never accepted the fact that tsw can be sped up. Now people are accepting that fact. Same goes for MW. In spite of this, Itsan and it's vets continue to do everything in their power to disprove the disprovable. Too sad. They have been like dragging a wounded lion through a jungle on a rope on these issues. I'm tried of dragging, but will never allow anyone to belittle me, ridicule me, discredit me, and attempt to make me look like a fool on a public forum and get away with it. You have made some stupid decisions Itsan. Don't bite the hand that feeds you!

    ReplyDelete
  7. I forgot to mention, even though Joey acts like Itsan has changed their stance on moisturizing (see her revised text and post on her blog), click on Itsan's "Partners" tab on their front page and see how they are promoting moisturizing by allowing companies that sell moisturizers to advertise on their site. Hah! Enter promo code "ITSAN" and get a discount on the price! Now ain't that something!

    ReplyDelete
  8. Dan you need to chill out. Seriously. Take a deep breath.

    ReplyDelete
    Replies
    1. Uh, just how long should I hold it?

      Delete
    2. Anonymous, do you have anything half way intelligent to say? All I ever hear is put downs from you pro Itsan people. Chill out? How can I consciously sit by and watch people be led down a path of misery when I know there is a better path? Month after month. Year after year. And you want me to chill out. How about some evidence that the placebo effect doesn't exist? That would satisfy my disgust in the way the Itsan vets tell everyone the ONLY way to heal is "the passage of time". And how about some evidence that long term moisturizing DOES NOT damage the skin barrier? That would shut me up real quick.

      Facts are facts. I use facts and common sense to make my points and draw my conclusions. The Itsan vets use condescending and arrogant put downs, ignore the facts, and always say things like there is no real data, we need double blind studies, etc etc. Here is an excerpt from Joeys recent post where she did her best to try and discredit me once again. And all she accomplished was to create more confusion amongst people that don't know any better. And then blame the confusion on me. Besides making herself look very foolish and showing her complete lack of basic knowledge of healing and how to effectively deal with tsw.

      "For clarity, no one has a corner of scientific truth on how to get through TSW the best and quickest way from what I've seen in the two plus years of managing the ITSAN forums. If you think you do have the answer and are less than a year into it? Do your thing and wait for another three years to brag on it because blowing horns loudly before your time can be an awful sound and embarrassing, in fact blowing a horn is really not that attractive to see or hear only when one has great skill in doing it. ;)"

      Delete
    3. Well, JSAN thinks she has the answer, which is the exact same answer as mine, and she is 100% recovered in 9 months. Joey is overlooking that fact with that condescending and arrogant statement. Is it OK for her to blow her horn now Joey? Does anybody really require your permission for anything? I think not! It's not a matter of blowing horns or waiting for anything. You guys are so wrapped up in your egos, and are so judgmental, that you just can't handle the truth. Gee, I think I told you something to that effect on the forum at one time. Nobody needs a corner on scientific truth to see and understand the obvious. When I was on the forum it was said as "two months" by one of the vets. Now, apparently it's under a year since I'm almost at 8 months. I will never be a vet and have no desire to be one. And I certainly don't have to wait even one day into tsw to have basic knowledge on healing, or anything else for that matter. I wasn't born the day I started my tsw and don't appreciate being treated like I was! I can read. I can do research. I can use common sense. I don't need to damage my skin for 3 years with moisturizers to understand that people shouldn't moisturize during tsw lol. Just a little research shows what's needed. I don't put gasoline on my skin for 3 years to find out if it irritates my skin lol. No, I happen to have a brain and happen to use it.

      Joey also has edited her whole post since I called her on her BS for attacking me. So, now people can't see everything she really said. I guess old habits are hard to break. She is a master at showing what she wants people to see and at hiding what she doesn't want them to see. She honed those skills very well on the forum. Funny thing is though, she left the part in her post where she shows just how clueless she is on moisturizer addiction. I don't even think she understands what Dr. Fukaya said in his response!

      And, she goes on to say....."Update: BTW, we recently edited the forum Q&A as I've seen both ways done (my own granddaughter did not like moisturizer for many months of her TSW) and not favoring one over the other if the person likes their method, that is just fine. ;)"

      Now that is a joke! After Dr. Fukaya set things straight on the matter of moisturizing, she says that? She can't even give him credit but instead says she is changing her stance on the issue due to her granddaughter? Like I told you before Tracy, (if this is you, the male Itsan board member - if not then I suggest you post here with a name) in my letter to the board, it is like the blind leading the blind. You guys are nothing but a joke and everyone is starting to understand that fact.

      And very naive to even think that the National Eczema Association or accredited doctors are going to help with our cause. What a clueless bunch of people you truly are. The lengths you folks will go to in an effort to NOT admit you are wrong is appalling! Simply appalling! Peoples lives are at stake for Christ sake! Does everyone need to suffer like you have? I think not!

      Delete
    4. Oh, and I forgot to say, look how she edited Dr. Fukaya's response. He addressed his response to "Dan & Joey". Here is his response in it's entirety.

      "Dan and Joey.
      When I saw patients with TSA , I used to recommend the use of moisturizers (white petrolatum or zinc oxide ointment). So all photos of the procedures for example in
      http://www.xtosis.com/chapter12.htm are of moisturizer use. Some patients did not seem to successfully withdraw from TSA (For example in http://mototsugufukaya.blogspot.jp/2013/06/how-long-does-rebound-period-continue.html). I admit some of such patients might be suffering from so called “moisturizer addiction”. In fact, I have an experience that one of my patients, who was hard to improve after TSW, visited Dr. Sato, was advised withdrawal from any moisturizer and successfully improved.
      On the other hand, some patients dropped out from Dr. Sato’s way from its initial hardness. Such patients visited me and successfully withdraw from TS with the use of moisturizer. It is also a truth.
      There are many obstacles which make natural healing of atopic dermatitis hard. Long term use of topical steroids and dependence to moisturizers are both difficult to be noticed. Such obstacles are different in patients."

      Delete
  9. Remember when Dr. Rapaport's videos disappeared "because of a site overhaul."
    ITSAN is concerned with controlling information...it will give us what it wants to, when it wants to. It will discredit or marginalize others. The fact that it accuses OTHERS of "conspiracy theories" is laughable.

    ReplyDelete
    Replies
    1. I wish I could say the same things with so few words like you just did. Yes I remember well. Other people who were banned from Itsan have said the atmosphere there reminded them of a concentration camp in Nazi Germany. I found it sickening when I was there and voiced very politely as to the whys, and what positive changes I felt Itsan should and could do to bring about balance, many many times in private emails to Joey. My concerns were always met with being treated like a child. An attitude of "you don't know because you haven't been where we have been yet". Just condescending remarks. After a month or so of this, and after showing MW in real time on the forum, and then several weeks later the Japanese conference info came out, I had finally said "now will you change policy?" Answer was "will consider it" (not those exact words but it was half way encouraging remarks), but action was more of the same so I waited a few weeks and one day just lost it and sent an email expressing my feelings in my usual crude way and was banned. They have had every opportunity since banning me back in October to change policy and still haven't.

      I imagine one day this blog will vanish and I want everyone to know it will not be by my hand. It is owned by Google so I have no control over certain things that can happen. However, I do back up the files daily and have other domains where I can open a much better site than a blog site has to offer. An if this site disappears one day, look for me as I will be back up within a few days time. Most likely as topicalsteroidfree.com

      Delete
  10. Hey Dan,

    It's Swanky (Mo) Butters again and I wanted to say, I'm not sure if you have it right about Joey. Recently she has presented the other side and mentioned Dr. Fukaya research and did not speak ill of not using moisturizer. As a matter of fact, she even mentioned about not over drinking too much water, I believe that was also from Dr. F.

    I'm sure since you guys parted on bad terms, it's hard for you to see it but Joey is open to choice but is also watchful of people who push "THIS IS THE WAY, THE ONLY WAY TO HEAL." or heal quick schemes. I know when someone is passionate about something, as I am about suing Phama, it can become all consuming.

    I always hated moisturizer and used when I felt I had no choice. Doesn't matter if it helped or not. It could be one of the reasons I have had such a long road and as a matter of fact, this flare started a few weeks after I started using Lard on my skin, so maybe there is something to it. I'm not suing now, just cause I hate it so.

    Here is the issue, until you can prove that not using moister works for everyone, 100%, without fail, you have to take a more measured approach at how you get your ideas out to the suffering public, that is just my opinion. Since I have been on the forums, both the old and the new, I heard of a million different things that pull you out of this nightmare faster. Like vitamin shots, tallow, oils, working hard, saunas, sweating, Chinese medicine, etc, etc. A lot with a heft price tag and some with no price tag that just seemed painful or unreasonable hopeful. So I listen to it all, think about it and about my condition, see if it makes some sense and if I think it does, I try it.

    Anyway, I just think you will get further by having a bit of humility, stating what you know and let the people judge for themselves.

    ReplyDelete
    Replies
    1. Hi Swanky,

      Please come join our new forum and help us get some discussions going. It would really be appreciated and very helpful for the entire tsw community. Thanks, and hope to see you post something there soon! No pressure to post if you want to lurk though just so you know. I'm sure you will eventually see a discussion you'll want to chime in on. If not, no problem.:)

      http://forums.nomoresteroids.com

      Delete
  11. No this is not Tracy. I am neither for it against moisturizer. I just don't understand why you cannot drop the subject. Every post someone makes you need to go and follow it up with three posts babbling on about the same thing. We get it. That's why I say relax. You could be the bigger man and stop all this fighting. We should just be supportive of people in this mess. We do not need to cause people more stress than needed. I am not trying to attack you or anyone. I'm tired of the fighting

    ReplyDelete
    Replies
    1. I too am tired of the fighting. I don't understand why there such a fuss over me telling 2-3 people per month about the benefits of not using moisturizers. My original post above was only done in response to a viscous attack on my character by Joey on her blog. Since she didn't publish my response in my defense I put it here. The old wounds aren't healed because the sores are still open. In other words, nothing has changed. I'll gladly stop now as I've said enough. But I won't be muffled by anyone and will continue to get my message out. Hopefully in a more effective way :)

      Delete
  12. Hi Swanky, I respectfully disagree with your premise. Joey isn't the tsw police outside of the forum and people are wise enough to make their own decisions. How I get my message out should not be of concern. The concern should be the message, not it's delivery. Don't shoot the messenger comes to mind here. I can't possibly have much influence over very many people compared to the influence that the Itsan vets have. If my message is not delivered in a way that is not acceptable to the few that hear it, then maybe they aren't putting enough emphasis on the message, and too much emphasis on the delivery. That's not my problem.

    I don't go around demanding everyone stop moisturizing. I point out the risks, give information, and suggest to some people they might try it. Sometimes I do get a little strong with some people at first, but some need to be jolted out of their stupor sometimes and it works. People are so conditioned to use moisturizers that they are difficult to reach sometimes.

    MW is the talk of the town now. It used to be completely off the radar. If MW doesn't make tsw more comfortable for the majority of people who go through tsw then it wouldn't be such a hot topic. I do appreciate your advice though and do find it useful. Thanks.

    ReplyDelete
  13. Fair enough Dan but what is the more important goal? I would assume it's to get your info to the most people and doing that at itsan would reach a lot more people and as a matter of fact, I'm sure cause you have brought the info to light a bit more than it was, it has gotten more attention.

    I mean, of course you can stay here and say it anyway you wish but I guess you will reach less people, I don't agree with the idea of laying that hard into itsan, if not for them, I might very well have killed myself by now. The main thing is with us and with itsan and with the medical community is not to get trapped in dogma.

    You goal, should be to reach more people that moisturizer is not a necessity and that it's totally viable and works for a large number of people. Since the early days I was telling people I hate moisturizer, over and over but yet, cause I where I have it, on my waist, there have been a time or two I couldn't have done without it, cause of pain, itch, cracking and bleeding. Maybe if I was like Rambo I could have taken it but I'm not.

    Now I am stronger in a lot of ways and in general better than I was. I can take not using moisturizer much better now. So you see what I mean, not everyone has the same journey.

    What would have been really helpful for me is seeing that as an option on the boards early on, which I only learned about reading Dr F's work. To me, that would have helped me a lot.

    Look, I don't even like getting wet or bathing at all and have gone HUGE stretches not doing so. In that case, your idea of dead sea soaks go against what I feel works for me. I would not tell anyone, bathing is bad or good but I would say, don't worry about it as much. I've had no infections that I know of, no real ill effects from it, short of odor and in that case I would wash with a washcloth in the main areas 'as George Carlin is fond of saying' "Armpits, asshole, crotch and teeth."

    I hope you see my point and in all honestly, I have no stake in it other than to help all of us folks dealing with this. I just think you could make more headway with a more level approach.

    Either way, please keep the word spreading cause people need to know of this option.

    ReplyDelete
    Replies
    1. Swanky, I was banned from Itsan in October of last year. Before that I was spreading the exact same message and was met with the exact same resistance by Itsan as I am from the outside looking in. My message hasn't changed and neither has Itsans.

      You never saw info like this on the board because it either gets deleted, or discounted and marginalized. I did MW in mid August and posted my experience in real time on the board. That was before I ever saw anything on Dr. F's site other than his study about mice and moisture. I had little to no information to go on other than what I saw on his site, and studies I had found that showed how continuous moisturizing damages the skin barrier. After two months of seeing the open cracks in my palms not heal I deduced that it was due to being kept wet via continuous moisturizing. Stopped moisturizing and my open skin splits and cracks healed, and my discomfort was reduced drastically. The studies I had read on the effects of moisturizers didn't say they apply to Dan. They said "people".

      It's not about Dead Sea salts or whether people like baths or showers etc. It's about how moisturizers damage the skin. Like topical steroids do. The key for the skin to heal is to allow it to heal. Putting ts or moisturizers on it only breaks the skin barrier down further. People don't need to take dss baths to stop moisturizing. That is just my own personal method of healing open wounds and supporting the skin. Other people have other methods, but the important thing is to not continuously moisturize.

      I agree that there are exceptions and some people need to use moisturizers. But they should be limited if they want their skin to strengthen and heal. Otherwise, TSW goes on far too long and they end up suffering way more than they would have if they had not used moisturizers, or had at least used them in a limited way. I see people all the time complaining about minor skin splits that don't heal for months and years. Most of this is solely due to continuous moisturizing. And, to make things worse, many use very toxic moisturizers. I only offer an alternative. Most of what I see can be healed in less than 3 weeks. Not healed as in no more tsw, but healed as in no open wounds.

      I get it. I truly do. We're all different. Some have a higher pain threshold than others. There are many differences in perception. I appreciate your well meaning comments and understand what you're saying.

      Swanky, have you ever gone 4 straight weeks without using any moisturizer at all? If you say no because you would have killed yourself I just can't buy that. There is way too much unjustified fear about not moisturizing. So much so that people keep themselves in a very uncomfortable state for a very long time all the while believing it's more comfortable than it would be if they didn't moisturize that dry skin.
      Even in some of the worst cases I could imagine where hospitalization and painkillers given during the initial 3 weeks of TSW would allow that person to spend the rest of their recovery in relatively good comfort. What a difference that could make.

      But my message is aimed at people that don't have extreme cases. people that are not that bad off. The majority of cases are pretty darn mild to in between. I don't believe the majority of TSW's need to use moisturizers, and I do believe using them is causing the opposite of what they are after. I attribute this misguided belief to the Itsan vets, as the same exact thing happened to me before I wised up.

      Delete
  14. I have this to share. And I'll state it bluntly:

    Joey has zero intellectual capabilities in terms of proper comprehension and logical debate shown in her latest post.

    She cherry picks selected arguments and fail to see the important message from Dr Fukaya on the issue of not-moisturizing : key message being:

    1) People can be potentially addicted/dependent on moisturizing
    2) MW is an alternative to faster, healing if all else fails.

    Instead of highlighting this important message, she goes on to her main message that TSW sufferers should not be forced to do anything else otherwise. It is a non-committal message, one that makes sense but misses the point.

    This is not a personal attack on Joey, but a critique of her intellectual faculties.

    If you guys want support, go to her, go to ITSAN. Engage in conversations with her that does not value add anything in the community. Sure, support is important, by all means use it.

    If you guys want to heal, be open and listen to alternatives presented by MW advocates. Engage in meaningful, logical debates, sharing of experiences. Experiment with it. Rather than shutting them up, banning them in ITSAN forums, post meaningless blogposts like Joey's (which selectively cherry picks and putting people down).

    Are you afraid you may be wrong, because your years of healing with moisturizers has put you in unnecessary pain? Be the bigger person and accept that you may be wrong.

    I respect people who are open to new ideas, challenge them in a logical, rational manner. I hate (yes, a strong word, but it is true) ppl who are closed minded, ban ppl for opposing views, writing valueless blog posts with no logical arguments, character assault.

    To add, I think Joey has no right to comment on issues related to MW, since she has not done so and has no experience at all. How will she know and understand the benefits of MW? So, continue to do your job, tell others to moisturize based on your limited experience, as a vet, as an ITSAN moderator.

    I hope you sleep well at night. Karma bites. Do consider iatrogenic properties of moisturizing.

    (This strong message is written in this way to hopefully induce some form of reflection in you Joey. I'm still waiting for your reply to my open letter with regards to my banning. Nonetheless, arguing with someone who has limited capabilities in comprehension is always doomed to fail, so I don't expect much from you).

    ReplyDelete
  15. I want to say that early on when I was a member of the forum I had exchanged several private emails with Joey and found her to be a very generous and caring person. I know she means well despite things said out of anger in the past between us. I hold no grudge against her what so ever. She is a very sweet person who would give a person the shirt off her back.

    This is not personal for me even though it may sound so at times. To me Joey represents the entire Itsan board and their combined consensus. My take is Joey and the board have been wrong in their approach to healing and need to make changes. I think her job requires her to execute the consensus of the Itsan board, of which I believe she has limited input. Joey is over worked, understaffed, overwrought, and I imagine she has been easily influenced and doesn't even realize it.

    Joey is taking the brunt of the criticism here and it should be shared equally by the entire board. That is only fair. She doesn't make the decisions on policy, the board does. She just carries out their wishes. But, then again, if that is the position she wants to maintain, she must bear the brunt of the criticism I guess. Now I think I'm just dead beat and tired and should go to bed.

    I just want Joey to know I am sorry for the way things turned out. All people are good and this is an unfortunate situation. But hey, to this day noone at Itsan has attempted to reach out to me and mend fences. What do you expect? You can't just discard people and pretend they don't exist. You did that to me and others in the past like Leslie. That is cruel and people will strike back as you have witnessed. Treat people with respect and be respected. Treat people with disrespect and be disrespected. Treat people with love and be loved. You get the idea.

    ReplyDelete
  16. Part One: Maybe this whole problem with the itsan vets is due to the following reason. This is just a theory. When itsan was formed in the early days many of these vets had what I would call "extreme" cases of tsw. I know from Joey's early pics she had it bad. I assume Kelly did too, and Tracy, Kristina or her kid I forgot which, and others. And to top that off, they have seen many of the very worst cases since the early days. Especially bad cases with very young children.

    Possibly they formed their consensus on how to treat tsw via with these cases in the forefront of their minds, and not with milder cases in mind? This would make sense as to why they have been so adamant in their stance on the use of moisturizers, all the while not realizing that a "one size fits all" approach isn't necessary, and even downright damaging. These people have experienced severe cases but on average I wonder what approximate percentage of all tsw's have extreme cases like they did and have seen in others. From what I've seen in my 8 months looking at blogs and from my time on the forum has been mostly mild cases compared to some of the really bad cases I've seen.

    In trying to understand why these people are so stuck in their beliefs, this is the only thing that makes sense to me. A small group of very well meaning people who simply don't realize that a "one size fits all" approach is not the correct approach. I think they are so concerned about the people with severe cases that they have simply overlooked the fact that not everyone that goes through tsw has a severe case, and these less severe cases can all be more effectively treated via no moisturizing. I think the majority of people have milder cases than what their consensus is based on. It seems plausible.

    ReplyDelete
    Replies
    1. Part Two: So, if my theory is correct, they need to recognize their flawed approach and readjust. In my opinion they should not guard everyone as carefully as though everyone has a severe case. To date, their adjustment has been feeble at best with the line of logic of "do what works best for you", while at the same time saying how beneficial moisturizing is for them and others who have been through this. They treat everyone as though they all have very severe cases like they had and have seen in others. They should accept the fact that not moisturizing is a much better way for all non severe cases. The evidence is overwhelming on this. No matter how severe, we each feel our case is severe because we haven't experienced anything other than our own pain and condition. So many people that have mild cases end up feeling they are just as bad off as people with severe cases, and fear they will experience the same hell ride. Which in fact is not true. But when you are subjected to a "one size fits all" approach mentality, you end up feeling that all cases are the same and all people experience the same hell ride.

      Maybe it's past time to set two protocols. One for severe cases and the other for less severe cases. I can see the need for limited moisturizing in severe cases for sure, but I also understand that in milder cases it is not only not needed, but actually causes more suffering in the long run. Since studies do show that continuous moisturizing damages the skin barrier, people with milder cases should not use moisturizers at all. That is pretty clear now. Actually has been to me for many months. And because their cases are not severe, they should be encouraged to do what's best for them, as in don't moisturize at all. There is a huge difference in telling people to do whatever makes you comfortable and telling them if you have a mild case you will suffer less if you don't moisturize. And, heal faster.

      The everyone is different approach doesn't help at all because everyone's case IS different, and by saying we are all different is very misleading as it is used to describe the wrong differences. Treating everyone with the same method does not make any sense at all with what we know about moisturizers today. Some cases are extremely mild, some are mild, some are a little more than mild, and some are extreme. Nearly everyone has this all wrong. Yes we are different in our perceptions and our likes and dislikes etc., but no we are not different in how our skin reacts to continuous moisturizing. Therefore, saying we are all different is only confusing to people if done to show why moisturizing can work for some and not for others. If done for the purposes of making the point that we are only different in the severity of our symptoms, it is then constructive and people wouldn't be so confused over such simple things.

      Delete
    2. Part Three: Which brings me back to the key word here "perceptions". If everyone is treated on the forum like they all have severe cases and are all told the same things then they all will perceive this to be the reality when it's actually far from it. That would explain why people with very mild cases often act as though they are literally dying from the pain and itching. They identify with everyone else and everyone identifies themselves as all having the same thing with just differing symptoms at differing times. A "one size fits all approach" can easily lead to this kind of group behavior or "thinking".

      So, obviously the "everyone is different" line needs to be put into perspective and not used to confuse people. I don't think it is done purposely, just that the vets approach is from a perspective of people with the worst cases and they unknowingly push their views onto everyone no matter what the severity of their case is.

      If the Itsan vets would just realize their errors and correct them, things would be so much better for all. I have personally taken people who literally felt like they were going to die from this and showed them a more positive approach and have seen their whole perspective and attitudes change practically overnight by using a much more positive approach with them and making them realize that their cases are extremely mild and they are being babies. I remember being shocked at one person who I and JSAN had helped out for a couple weeks only to discover her symptoms were practically non existent when I finally was sent photos. My jaw dropped to the floor when I saw the photos. All I had to do was give a few words of encouragement, point out that her symptoms were extremely mild, and show her pics of my symptoms. She has moved on with her life since and has had a completely different attitude. Her original "I'm dying and can't handle this any longer" attitude came from her exposure at Itsan.

      So, itsan vets, how about saying what the differences really are and stop confusing the issues for these people. Realize your errors, and accept the fact that what is needed is two basic protocols, rather than just the one you currently use. Once you do that you will see a completely different atmosphere come about with a completely different outcome. And it would be very positive. By not changing with the times and adjusting to new information in a timely manner you vets are losing credibility very quickly.

      Delete
  17. Well, I guess there is no peace in the valley.

    I understand your point but I understand theirs as well. Sadly this is not going to be settled here.

    You surely are passionate about your position, maybe it's time you start your own organization. Maybe it will do some good.

    Personally, I'm on the fence about lack of moisturizer helping but I guess time will tell. I'm doing it cause my body feels like it could handle a little extra dry and I always hated it anyway. I'll let you know how it turns out. All data is good data.

    Good luck on your quest man, time to go after my own.

    ReplyDelete
    Replies
    1. Does peace mean allowing itsan's vets to run roughshod all over suffering people looking to them for help? We don't need that kind of peace. We need reasonable people to make reasonable decisions.

      I asked you a very direct question and as you have done in the past you avoided it. I asked "Swanky, have you ever gone 4 straight weeks without using any moisturizer at all? You didn't answer.

      Back on January 9th when I last asked if you were moisturizing you said "Yes I used moisturizer on parts of my body, at times is almost seemed like I had to. I do use soap from time to time as I really don't know what else to use to get clean."

      If you aren't willing to stop moisturizing, and stop using soap, and do a dss baths every 2-3 days for 2-3 weeks then you really can't make a judgment on my methods. If you hate water you hate yourself. Your body is 60% water. Do you want your nuts to stop itching or not!? I gave you a gift my friend but it's up to you to accept it. You really had nothing to lose. Maybe our nuts are different? You are still focusing on things that don't matter imho.

      Delete
  18. Well, I just want to say that "why cant we all get along" LOL
    I really think , as horrific as this is for us and all involved we could at least learn from each other and make a positive difference for these poor people that are afflicted with TSA. This is why people wreck things. I like your blog Dan, lets move on...the peeps that want to heal faster will try your method. Thanks for the info. Peace....

    ReplyDelete
    Replies
    1. Agree, At this point it's a waste of time if people aren't willing to take a little time to understand the science and logic behind my MW method. It seems nobody is willing to listen to reason. Apparently reason, common sense, and simple logic is not a part of the conversation.

      I would estimate that 99% of everyone that tries my MW method changes it so it's no longer the same method, which in effect makes it ineffective, or not as effective as it can be. People that try the salts use too little salts, or try them once or twice and give up. Most don't use the dss salts at all and fail to find the comfort MW brings due to that alone. I just don't understand how anyone can read the benefits of dss baths to the skin and not "get" it. Not to mention the studies that have been done that shows how effective they are.

      The dss are simply a tool to make the initial few weeks of MW effective and complete. As is the tree tea oil, to get broken skin to heal and stronger than it was before. It's not difficult to understand to me but apparently for most it is. MW makes the skin stronger. Dss baths aid in healing the skin. Tea tree oil heals small persistent skin splits the salts don't get right away. Simple as 1,2,3.

      I really don't think people are reading the info and connecting the dots. Out of everyone that is doing MW right now, none are doing it in a way that will give them the most optimum results, so we have people saying either MW didn't work for them, or they didn't see much of a difference, etc., etc. These people haven't taken the time to understand the science and logic behind my method. They just focus on the mantra of everyone is different so do whats comfortable for you. Moving on...

      Delete
  19. I have no idea why I can't post a comment longer than 4,000 characters on this blog so here is part one. Part two will follow.

    Itsan is a non profit entity which takes advantage of the tax code's benefits of being such. If they are to hold their hand out for donations in the name of "providing resources to help eczema patients withdraw from their topical steroid medication to cure their addiction", then they have a moral responsibility to provide those resources. Not hide them or discredit them.

    Excerpt from Itsan's mission statement:
    "The organization is made up of an international community that provides support and resources to those going through topical steroid withdrawal. ITSAN is devoted to providing resources to help eczema patients withdraw from their topical steroid medication to cure their addiction. Each passing day the organization works to fulfill the hope, of having a healthy and itch-free life, for thousands of eczema sufferers worldwide."

    Why does Itsan so readily discount what the Japanese doctors have learned about MW by saying they need better studies? Especially in light of information that I and others have provided to them as well. This is, at a minimum, morally wrong. When there is that much evidence showing that MW leads to a much more comfortable recovery as compared to moisturizing, why would they not embrace it and be the biggest advocate of it, and go about helping people do it? Instead, they are the biggest advocate against it. Why? Because you need more evidence? What evidence do you have that shows continuous moisturizing during TSW is more beneficial than not? None.

    Excerpt from Itsan's latest revise Q&A statement:
    Q: What about moisturizers during topical steroid withdrawal?

    "There is a faction that believes in "moisturizer withdrawal". ITSAN's position on this is neutral as there still needs to be much more evidence in this area. ITSAN has seen many people fully heal using moisturizers and they never became addicted to their moisturizer. The number that have healed without moisturizers within our network is unknown, as yet, no one has come forward saying they have healed without moisturizers . Just as TSW effects different people differently, so may moisturizers. Only you can select which approach to take. If more evidence in this area is available we will certainly post it. ITSAN wants to support you through the best process possible."

    Firstly, becoming addicted to moisturizers is not the issue here! Good lord! This is about comfort! Really? "no one has come forward saying they have healed without moisturizers". JSAN healed 100% in 9 months without the aid of moisturizing. That's part of the reason it only took 9 months! If more information becomes available you'll post it? From what I've seen you go out of your way to discount any information that becomes available in this area.

    ReplyDelete
    Replies
    1. Part two:
      If ITSAN really wants to support people through the best process possible then stop going out of your way to discount valuable information. I have quite a bit of information on my blog that is a great resource for people who want to try MW. There are many potential pitfalls and mistakes people can make in attempting MW with no information available to them, and having the experiences from others who have done it would be a very valuable resource don't you think ITSAN?

      ITSAN has now changed their stance on the issue from "moisturize all you want" to "do what makes you comfortable because we are neutral on the subject". It is all too apparent that ITSAN is still very anti MW. They aren't open to it one iota. The language they use and the way they communicate on the forum makes this abundantly clear.

      In the meantime, many people are trying MW without the aid of my and others knowledge and experience with it while ITSAN stands by and watches. Why would ITSAN want it's members, who they act like they care so much about, experiment on their own with MW without the aid of such valuable information? Seems very cruel to me. There is no need for these people to have to reinvent the wheel and this is what's happening now. Many will fail. Is that what you are after ITSAN?

      How about swallowing your pride in the interest of your members and accept the fact that not moisturizing in mild cases of TSW, and very limited moisturizing in severe cases is a very valuable tool in finding comfort, healing open wounds, reduced itching, and possibly speeds up TSW, among other benefits. Accept the fact that continuous moisturizing damages the skin barrier. Admit you were wrong and do the right thing.

      People look for me and others that have the answers they need yet you ban people like us and do everything in your power to discredit us. Most ITSAN vets don't have my blog link in their blogs on purpose. If you guys truly care about people then why not embrace such valuable information?

      If I am wrong about MW then why is it that it has become such a controversial issue? I'm not on ITSAN's forum and my blog is only linked in a few other blogs. Let's face it, if MW wasn't as beneficial as I say it is then there wouldn't be so much resistance to it, and so many attempts at discrediting the idea by so many people. I am just one person and I don't reach that many people. Why am I such a threat? Possibly because I've been right all along and you don't want to admit it? Well too bad, grow up!

      Post a link to my blog for people who want information and I'll shut up. Hell, make an attempt to work together like I did with you before YOU banned me and I'll shut up. As many have said, we need to work together. But most importantly, people need access to all information to make their own decisions for themselves.

      Delete
  20. A read of the Q&A shows ITSAN are ran by monkeys. Look at this poorly worded statement bereft of any logic:

    " ITSAN has seen many people fully heal using moisturizers and they never became addicted to their moisturizer. The number that have healed without moisturizers within our network is unknown, as yet, no one has come forward saying they have healed without moisturizers ."

    1) Do people heal because of moisturizers or due to other factors i.e.> lower IgE over time as shown by Dr Rappaport, Lower NO levels over time, time allowed for underlying base layer of healthy skin to grow in the absence of TS, cleaner diet, better weather etc? How do they know ppl heal with moisturizers and not due other factors? Does that Q&A statement mean that if I use moisturizers I'd be healed? If so, you are giving false hope and bluffing the community because people have been slapping on moisturizers and their skin condition remain sub-optimal.

    Even Dr Fukaya stated that ppl could be dependent on moisturizers just as they were dependent on topical steroids. How clear does it need to be, before those monkeys realise this.

    2) "Number who has healed in the ITSAN network is unknown". Absence of evidence does not mean evidence of absence. Why unknown, because you banned all those who spoke out about MW. Many have reported improvements with MW, yet ITSAN fail to recognise this. Dr Sato research figures showed this, yet ITSAN fail to recognise this again. So what does ITSAN need? I suggest they do more research, read more blogs, pay attention to the facts/logics/evidence presented.

    Lastly, even real monkeys don't do harm to humans via their actions and behavior.

    ReplyDelete
  21. It appears Joey has taken down her original post. I applaud her for what could be a case of self-reflection in knowing how skewed her message was. I also applaud her for her self-censorship, something that she and her crew of ITSAN Mods do alot in their forums too. Removal of information that portrays badly on them is their forte apparently.

    As to what she has done (removing of her post), I'm no less puzzled as to why she needed to do that. It shows a lack of integrity, taking potshots at people, then removing the posts upon understanding the backlash from it. All this shows poor consistency and conviction in what she believes in. While her original post showed her lack in quality thinking, her newer post does not make it any better too.

    Joey, your world does not consist of yourself and your granddaughter, your honey research or your limited understanding on dry skin. Be more open to others experiences, others knowledge. You want to live in your own world, by all means fine. Just don't harm others with your limited knowledge.

    You are right about being supportive. Thanks for banning me and Dan and a couple of others when we tried to share our experiences and perspectives. How is that for supportive? Hypocrites. You want good support, try engaging in meaningful debate/discussion that produce value for readers. Not just "comfort/support" that does not help to improve knowledge on how to better our skin condition. If you just want to provide "support/comfort", then do that. Stop preventing information from being shared. Stop filtering information that could help others. Stop banning others when their views are opposite to yours. Be open and ready to say "Yes we screwed up, now lets move on and improve this community together".

    I believe you are a good person. You just need to think on critical issues more deeply and improve your worldview/perspectives. I believe the group of us here are more open to reason than you think. Be confident in your views, share them, subject them to intellectual rigor (as my blog is always open for critique). You will find that at the end of the day, your views/arguments/conviction become stronger for every wave of criticism thrown at it. If you make a wrong opinion, admit it, apologize, learn and move on! This is how we grow as a person. It is weird for me to school a grown adult, you may find it offensive. That is your problem and not mine to deal with.

    This is the way I'm brought up, to add value, regardless if you are older or younger.

    ReplyDelete
  22. I see now Joey has taken her "blowing horns" image out of her "replacement" post. I appreciate that. However, when talking about moisturizing between her and her granddaughter she says "Neither one of us ever pressured each other to do a certain method of withdrawal and just trudged through it each day with prayers for each other.". One has to ask why she used the word "pressure". Where has this concept of pressuring people to not moisturize come from? There is a huge difference between encouraging and pressuring. She then goes on to talk about how it could be dangerous for someone to tell a person in a condition like she was in to avoid a safe barrier for their severely compromised skin. Does she not realize people are responsible for themselves? I have made it quite clear that people with severe conditions need to use caution when considering not moisturizing, and have also talked about how it can still be done in severe cases if one does it properly. I'm sure the Japanese do it all the time even in the most severest of cases.

    It all depends on the severity as to how it would be approached. I can easily imagine the most severe cases being hospitalized and treated with occlusive bandages for a time and then put through MW and taken care of until they are able to go home. However, the majority of TSW cases don't require hospitalization. Everyone feels their case is severe for a long time until they have seen enough pictures of more severe cases than they have. I have seen people with extremely mild cases act like they were dying. This comes from identifying with the "groupthink" mentality and "certain" people who push their views on them in that group. Once they see others with much worse symptoms their attitudes and expectations completely change.

    And of course she always refers to her concern for children. I have never advised a child to not moisturize. I wouldn't hesitate to advise a parent to not moisturize their child though. Joey focuses her advice and opinions on how to deal with TSW with a one shoe fits all approach. Not all people have the most severe cases and shouldn't be treated as such! She goes on to say "I have read medical studies that say dry afflicted skin is more prone to infection and the only time not to use it is if there is already an infection." So what? I have read studies that say skin that is kept moist for long periods of time is a perfect breeding ground for bacteria and fungus. Again, she only pushes her views on the need to moisturize while contradicting herself when saying "I take no stance on what is best for others on the moisture topic since it's person's choice to do what feels best for them."

    She then proceeds to talk about honey as a moisturizer and putting in a link showing serious burn victims! And ends it with saying how you get through the hell ride is not so important as the getting there is. My first visit to my doctor when I stopped ts I was told I had first degree burns on my hands and was given silver sulfadiazine. I experienced the most hellish experience in my life from this cream for a solid week before going to a Derm for help who then proceeded to screw my skin up even more. I also have tried honey during TSW. It doesn't work for TSW symptoms. It is meant for short term healing of wounds, not for steroid induced eczema type of conditions. Let's see how long she leaves this one up. http://steroidredskinsyndrome.blogspot.com/2014/01/be-quick-to-hear-and-slow-to-speak.html

    ReplyDelete