tag:blogger.com,1999:blog-31104145203150565092024-03-18T21:45:20.826-07:00Dave's Topical Steroid WithdrawalI am a 60-ish married engineer that has dealt with moderate eczema my entire life, primarily through the use of topical steroids. In early 2012 things started going wrong, and this blog is a personal diary of my journey through Topical Steroid Withdrawal, also known as Red Skin Syndrome, Topical Steroid Addiction, or Steroid Induced Eczema. I have been completely free from all steroids since July 9, 2013. Please see www.itsan.org for more info and feel free to post here!Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.comBlogger79125tag:blogger.com,1999:blog-3110414520315056509.post-57555629149403900492022-02-08T11:36:00.005-08:002022-02-08T11:40:08.544-08:00Tuesday, February 8, 2022 - An Update and a Video <p><span style="font-family: Helvetica;">What a crazy couple of years this has been!</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">Apologies for not keeping this blog up to date, but every time I have attempted, I have failed.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">I could go on and on, and maybe I will, about the turmoil this country has been in, the pandemic, my wife’s IBM, how my faith in humanity has been shaken to the core, how politics and religion have altered my relationships with friends and family, etc., but hey, this is a TSW blog!</span></p><p class="MsoNormal" style="font-family: "Times New Roman", serif; margin: 0in;"><span style="font-family: Helvetica;">Even though I thought I was completely healed, that has not been the case.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">I have been through a couple relatively minor flares since the last post, and I have been struggling to determine whether they will ever go away.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">Perhaps they are not really flares, but rather me just dealing with contact dermatitis, especially since the only symptoms have been skin related.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">Anyway, I will post more about it, but I really wanted to get a link posted ASAP about a newly released short documentary called “Skin on Fire”.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">The director is a friend of Dr. Marvin Rapaport, a personal hero of mine, and I think it is excellent.</span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;"> </span><span style="font-family: Helvetica;">It’s only 30 minutes long, and if you are reading this I think it would be well worth your time:</span></p><p class="MsoNormal" style="font-family: "Times New Roman", serif; margin: 0in;"><span style="font-family: Helvetica;"> </span></p><p class="MsoNormal" style="font-family: "Times New Roman", serif; margin: 0in;"><span style="font-family: Helvetica;">https://youtu.be/GuaBbsL1qKA<o:p style="font-size: 9pt;"></o:p></span></p>Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com4tag:blogger.com,1999:blog-3110414520315056509.post-60006922476727249712020-04-02T15:27:00.004-07:002021-01-27T07:17:16.525-08:00Thursday, April 2, 2020 - Dave's Magic Manuka Balm<div style="caret-color: rgb(29, 33, 41); color: #1d2129; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; margin-bottom: 6px;">
Due to public demand, I have decided to publish the recipe for my highly regarded Dave’s Magic Manuka Balm.</div>
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I have tried a plethora of balms, ointments, moisturizers, and oils, and after experimenting with homemade versions, the following concoction is, humbly, the best I have ever used. It is inexpensive, has no preservatives, absorbs into the skin nicely, and clears up any patches of dry contact dermatitis that I still get on occasion. </div>
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Ingredients:</div>
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1/2 cup Safflower Oil<br />
1/3 cup Shea Butter<br />
1/4 cup Beeswax<br />
1 tablespoon Manuka Honey</div>
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Directions: </div>
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Melt everything except honey in double boiler. I use a glass bowl that fits on top of a saucepan filled with enough water to touch most of the bowl. When everything is melted, remove glass bowl, dump the hot water and replace with ice and water, then place bowl back on top. This will cool down the melted ingredients quickly. Use a handheld mixer to whip the ingredients as they cool, pausing occasionally to scrape the sides of solidified mixture back in. When mixture is almost solidified, add the honey and continue to whip and scrape the sides. When mixture is completely whipped into a frenzy, scrape it into your final container. Immediately place it in the freezer for about 15 minutes. Then just store at room temperature in a handy place. The results is a fairly thick balm with, well, not an unpleasant odor. Naive, yet not innocent.</div>
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If you'd rather have something that smells nice, you can add a drop or two of essential oil, such as lavender, but keep in mind that essential oils are very complex and not as safe as those that sell it would like you to believe. Some, including lavender and tea tree oil are estrogenic. I completely avoid them.</div>
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The freezer part is to cool the mixture quickly. If not done, the honey in the balm will tend to crystalize, which is fine as it melts on your skin, but it is much nicer if it’s all smooth and buttery. </div>
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NOTES:</div>
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Manuka honey has quite the reputation, but there is no conclusive evidence that it is effective at anything better than regular honey. Also, the odds of buying actual Manuka honey, even of the label says it is, is about 10%. The majority is counterfeit. I trust Costco. Honestly, the balm is probably just as effective with regular honey, but since I saw Manuka honey at Costco I grabbed it. Other oils would probably work fine too, but I am partial to safflower as it has actually been clinically tested on babies.</div>
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It is my opinion that many people that have allergies struggle with using moisturizers because virtually all commercial products contain preservatives. Many of those preservatives, and other ingredients used as well, are known allergens. The majority of shampoos, for example, contain methylchloroisothiazolinone and chloroisothiazolinone, a combination also known as MCI, that is a preservative used in industrial lubricants that works by breaking down cell walls. Nasty stuff. It is now my philosophy to not use anything on my skin that I would not eat. I actually tasted this balm, and, well, it tasted awful. I do not recommend spreading it on toast.</div>
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Links to products I used:</div>
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Safflower: Just whatever is at grocery store.<br />
Shea butter: <a data-ft="{"tn":"-U"}" data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2Fgp%2Fproduct%2FB01J29G72O%2F%3Ffbclid%3DIwAR3Al-K95Nd9eDiQPk-nsrPqhhE41gONBosbxr9m3JZor3auD5PZF96-9YQ&h=AT05ern1caoUjGtJRkE2Zci789BEtp46n1g8xG3VeHYDbLHkGHX3P9yMrvStMZ8ScM-F0GClUV36AT1zA2uzwhpHr_SzENJu57OPQYNEKdrJ9UDFlBj8p_PUjDJlZsHIASQab7R5J4vbU6LjKbOlSA9VabMpw78FHamPjS7lk0DWmuLcng" href="https://www.amazon.com/gp/product/B01J29G72O/?fbclid=IwAR3Al-K95Nd9eDiQPk-nsrPqhhE41gONBosbxr9m3JZor3auD5PZF96-9YQ" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration: none;" target="_blank">https://www.amazon.com/gp/product/B01J29G72O/</a><br />
Manuka honey: <a data-ft="{"tn":"-U"}" data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.costco.com%2Fcomvita-umf-10%252b-manuka-honey%252c-17.6-oz..product.100406493.html%3Ffbclid%3DIwAR1rFiHEptTkeECuxeIAKkJggXp3TW8IanBHsWrnHQAC3HxBGH9OQo5RMmI&h=AT3-yzPPj_YWsqPsUUBd6UXszqIPFdlZpmyVWqTPJp38Uq_JdA65swCM55LSqNYc-FLp0Un6iPMSzwP5MoKHkW6S2ue66wZmEjryPXWU46b7z9P-s5jwU67NmTZTVybEkFXwYFGJ8wh5yvQ9mIuKJelJukL9KW2o8qRWgD-N9nqtxUixkw" href="https://www.costco.com/comvita-umf-10%2b-manuka-honey%2c-17.6-oz..product.100406493.html?fbclid=IwAR1rFiHEptTkeECuxeIAKkJggXp3TW8IanBHsWrnHQAC3HxBGH9OQo5RMmI" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration: none;" target="_blank">https://www.costco.com/comvita-umf-10%2b-manuka-honey%2c-17…</a><br />
Beeswax: <a data-ft="{"tn":"-U"}" data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2Fgp%2Fproduct%2FB01LYMZK4V%2F%3Ffbclid%3DIwAR0AInQNOx2hOfhg6O1kDE6y_z6UcrhwClTlrOpzH-1psGOZ1nUeRSBjqxU&h=AT0zeWqyDqDMGyVgYZBFkiQA7VsW3jJNIv_A8HWCFYdu_Cistzva2sv3MF8KIUUn6_1IEC2rU3xVSRNB5jEtWGgCBFjpiVUQzuYfgnb-vsOjzci2B-FbG3hIZ6BQ4Aev-dBZW2j2UHY00oyA2xR_cTFpE1iuS_aTyyY07_aVZeNvgQKCZg" href="https://www.amazon.com/gp/product/B01LYMZK4V/?fbclid=IwAR0AInQNOx2hOfhg6O1kDE6y_z6UcrhwClTlrOpzH-1psGOZ1nUeRSBjqxU" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration: none;" target="_blank">https://www.amazon.com/gp/product/B01LYMZK4V/</a><br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com3tag:blogger.com,1999:blog-3110414520315056509.post-35839098126914432472020-01-08T10:49:00.001-08:002020-01-16T23:23:13.662-08:00Wednesday, January 8, 2020 - I Blend in with the Crowd<span style="background-color: white;"><span style="color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif; font-size: normal;"><span style="caret-color: rgb(102, 102, 102); font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: medium;">Almost exactly six years ago, while writing about my mom and her dementia, I wrote on this blog "Nothing would make me happier than to be a normal, average guy that blends in with the crowd. That would be fabulous, and when I get there again, which I will, I will embrace it as sweetly as I do my Mom."</span></span></span><br />
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<span style="font-size: medium;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: normal;"><span style="background-color: white; color: #666666;">My mom passed away about 4 months after that post. </span><span style="background-color: white; color: #666666;">Today, I embrace my normalcy just as sweetly as I hoped, and I embrace the memory of my mom even more. </span></span></span><br />
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<span style="font-size: medium;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: normal;"><span style="background-color: white; color: #666666;">UPDATE: I am having trouble with Blogger when responding to comments! The following is a response to Unknowns comment to this post:</span></span></span><br />
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Hi Unknown! This is Dave, but for some reason if I try to reply it won't work. Thanks so much for stopping by and commenting! I have a lot to say about NMT, but the short version is I think it is BS. Here's a discussion about 6 years ago, including a discussion with Dan, the big proponent back then of MW, or "moisturizer withdrawal". He has since taken back his claim and says that MW does not speed healing.<br />
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https://davestsw.blogspot.com/2014/01/january-28-trip-to-doc.html#comment-form<br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com2tag:blogger.com,1999:blog-3110414520315056509.post-83686698945625406002019-07-13T10:49:00.000-07:002019-07-13T10:54:35.508-07:00Tuesday, July 9, 2019 – 6 Year Anniversary!<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">This might be it! This was the first year since starting TSW on July 9, 2013, that I have not had my usual summer flare. I feel fantastic, at least as far as TSW goes. I still have an occasional itchy spot, but since I am allergic to a whole bunch of stuff, that is to be expected and will certainly be lifelong. I have heard that TSW healing takes about 10 to 20 percent of the time that topical steroids were used. If so, I consider myself lucky since I used them for over 50 years, essentially my entire life, and about 10 percent of that time has passed since starting TSW.<br /><br />It has been a while since I last posted, so here’s a summary of what has happened since then.<br /><br />I retired last February. It was sooner than I should have financially, but I want to be able to travel with Robin as much as possible while she is still mobile. The first thing we did was to make a road trip to Florida, and we had a great time. We made it all the way to Key West. We have other road trips planned and the next will be to drive to Seattle to visit friends and family. Hopefully we will make it down the west coast to see my daughter that works at Disneyland before heading home.<br /> <br />I was hoping Robin would go, but she just didn’t feel up to the long flight, so I went alone to Mooloolaba, Queensland, Australia for the first time to visit my daughter that lives there with her husband. The trip was amazing. It was so great to see her and her husband’s family, and I fell in love with Australia. It is beautiful. On the way down and the way back I was able to visit her twin in California. We tore up Disneyland! I am really hoping that we make it there on our west coast road trip, not only for Robin to see Disneyland, but for us to visit relatives that are scattered about the west coast.<br /><br />Speaking of Robin, her IBM is thankfully progressing very slowly. Lately it has seemed to affect her stamina more than strength, and she tires easily. We moved last year to a single-story home and it is much easier for her to navigate. We also live much closer to her daughter and three grandkids, and we enjoy spending time with them. Robin is still very active with the NICU Angel Gown program. We are going to see Peter Frampton this fall, as he has announced that he also has IBM and is doing a farewell tour since he knows he will not be able to play the guitar well much longer.<br /><br />I got a request from another TSW warrior in Argentina, Santiago Aufranc, to use my graph on his Spanish blog he is working on. I said yes of course, and it will be fun to see it used in new places. Pic of the Spanish version below.<br /><br />Finally, this blog has become more personal than just about TSW, but that is a good thing, at least for me. Now that I am retired, I intend to spend more time doing this and other social media. I have a lot to say about TSW, especially regarding alternative medicines and alternative methods, such as the Aron Regime.<br /><br />If you are reading this and are going through TSW, I send virtual hugs and promises that you will get through this and emerge a better person than you were before!</span><br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-11698654545135614682018-12-13T10:10:00.000-08:002018-12-13T10:26:28.111-08:00Thursday, December 13, 2018 - 100%This post is a difficult one. On one hand, I am completely healed. My other hand is madly knocking on wood. I have literally zero symptoms of TSW. My skin is the best it has ever been. It could be my imagination, but I feel like my skin has "toughened up" and got thicker, especially on my hands. If I were to do some project before, such as woodworking, my hands would pay a price, and typically crack or at least break out. Now: nothing.<br />
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I still have allergies, and with the exception of some crazy temporary allergies during the bad parts of TSW, they are not caused by TSW so they will remain with me. I will still need to avoid known allergens, such as propylene glycol, preservatives, and Poof Ball, our Persian cat, as I can still get contact dermatitis.<br />
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I am having tendonitis issues in my arms, and that may be a lasting side-effect of life-long topical steroid use, I don't know, but it may just be because I am almost 64 after all.<br />
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The hard part about this post is that my selfish joy is tempered by Robin's battle with muscular dystrophy. We found out Robin has MD a few years ago, but it took a long time for the docs to give her a final diagnosis. It turns out it is a rare form of MD called IBM, for "Inclusion Body Myositis", an incurable degenerative muscle disease that is affecting her legs, arms, hands, and ability to swallow. We have been feeling the disease is progressing extremely slowly, as she can still walk fine without assistance and is still able to volunteer full time for the NICU Angel Gown Program. Also, our new single story home has been great for her, as she has increasing difficulty with stairs. The issue we are most dealing with at this time is her stamina. After what you and I would consider normal activity, she gets very tired very quickly. Robin has been incredibly strong about this whole experience, with a stoic attitude of simply playing the hand she's been dealt the best she can, but damn, this aspect of IBM has hit her hard. She will probably get mad at me for making this post, but one reason I am is that I feel that those that know and love Robin personally need to be aware of her limitations, as she would never be the one to tell anyone about it, and certainly the very last to complain.<br />
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I intend to continue this blog, perhaps with a shift in focus from me to Robin. This blog was started simply as a personal diary so I can look back at what was, but I have been told that it has been a help to others going through the TSW ordeal. Perhaps it can be a help to those with IBM as well. In any case, it can continue to be not just my diary, but our diary about a strong and beautiful woman tackling a life changing challenge with wisdom, beauty, grace, and dignity.<br />
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With that in mind, I have made a (hopefully) final version of my infamous graph that shows (mostly symbolically) what I went through. I am not kidding myself here, as I fully expect to go through at least another flare, but based on how minor the last flare was, I fully believe that TSW will no longer have a significant impact on my life.<br />
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<br />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com7tag:blogger.com,1999:blog-3110414520315056509.post-2843717899206332202018-09-11T10:16:00.000-07:002018-09-11T10:16:31.475-07:00Tuesday, September 11, 2018 - Feeling Great!First, always remember those that lost their lives 17 years ago today. Our lives have never been the same and what was intended to tear us apart has made us stronger.<br />
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Secondly, I feel so good! I am back to pre-flare condition, which means I am at 99% healed. Honestly, I will probably never make it to 100%, and I'm okay with that. There's some persistent rash and itching primarily on my right hand, likely due to contact dermatitis. My next step is to start doing the UVB light box again in hopes that will take things the rest of the way.<br />
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Not only was this flare the shortest yet by far, this is the first time a flare has not affected my feet. They were happy campers the whole time. Actually, I was a happy camper the whole time as it was also the first flare that did not affect my everyday activity. My daughters visited from LA and Australia and we had a great time! Yay!<br />
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Normalcy will never be normal to me again.Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-29154017831982100212018-06-11T11:26:00.000-07:002018-06-11T11:29:20.859-07:00Sunday, June 10, 2018 - Yep, Another FlareI'm approaching my 5 year anniversary and I've been hanging on to feeling good and enjoying it every day but I have had a nagging feeling that another flare was going to happen. Maybe because of the heat, I dunno, but every year right about now it has happened, and it is happening again. Damn it.<br />
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It's a little different this time in that it came on quickly. In just a couple days the hands got significantly worse, the neck broke out, the creepy crawly feelings are back, and I am having trouble sleeping. Nothing terrible yet, so I am hoping that it will be mild and short lived.<br />
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I was really hoping to take Robin to Disneyland this August and I am still making plans, TSW be damned. My daughter is a photographer at Disneyland and the last time I was there was about 6 years ago with her and her twin sister. Robin has never been to a Disney anything, and I am hoping she will love it as much as I have virtually my entire life. It will be especially sweet because my other twin daughter will be visiting from Australia.<br />
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While there, I am tempted to make an appointment with Dr. Rapaport, the Beverly Hills dermatologist who pioneered Topical Steroid Withdrawal, just to give him a hug. It was his work at UCLA that shed light on Red Skin Syndrome and made millions aware of the dangers of topical steroids. He co-founded ITSAN, the organization that helped me so much through the bad times. Dr. Rapaport and ITSAN have unfortunately parted ways, but I still love them both.<br />
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<br />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com2tag:blogger.com,1999:blog-3110414520315056509.post-61529067987890792382018-03-31T14:11:00.000-07:002018-04-01T11:11:27.769-07:00Saturday, March 31, 2018 - Still Feeling Good!<span style="background-color: white; color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif; font-size: 12px; text-align: justify;">I haven't updated in a while, so I thought I'd pop in and say I am doing great! 99% healed and I think that is as far as I'll get. I still have allergies, after all, so I deal with contact dermatitis. I use safflower oil when needed on hands and feet and if there's an itch I still keep Allegra anti-itch cream on hand, although I hate to use any commercial products. I suspect another flare is on the way, as they always show up when the weather warms up.</span><br />
<span style="background-color: white; color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif; font-size: 12px; text-align: justify;"><br /></span><span style="background-color: white; text-align: justify;"><span style="color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif;"><span style="font-size: 12px;">As I mentioned last post, the areas that are persistent, namely my hands and the tops of my feet, may never heal because way back in the 60's when I was about 10 years old I recall having radiation treatment done on them to treat my eczema. Not sure how many times this was done. My primary memory is having a very heavy lead shield placed over my body and the nurse leaving the room before I was zapped. I have never heard of any one else that has had this done. I try not to worry about what this did to my body. Between this and being a "downwinder" I suspect I know my final fate. In the meantime, I will enjoy life as much as I can.</span></span></span><br />
<span style="background-color: white; text-align: justify;"><span style="color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif;"><span style="font-size: 12px;"><br /></span></span></span>
<span style="background-color: white; text-align: justify;"><span style="color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif;"><span style="font-size: 12px;">That reminds me, one thing that has helped me lately is a bit of a philosophy adoption. My son-in-law from Australia has taken up "Stoicism" which may be the worst name ever given to a philosophy. It implies being "meh" about everything, but is actually quite the opposite. One of the main ideas is to accept the things that you cannot control, such as going through TSW, and not let them ruin your life. Take on each day as if your life is brand new and do what will make you the best person you can be. To learn more, look up https://www.facebook.com/practicalstoicwisdom/ on Facebook or http://www.risetothegoodlife.com. One thing I like about it is that it does not rely on religion. Those that know me personally know why that's important to me. No worries, I won't get into it on this blog. Haha!</span></span></span><br />
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<span style="background-color: white; color: #666666; font-family: "trebuchet ms" , "trebuchet" , "verdana" , sans-serif; font-size: 12px; text-align: justify;">Hugs from Texas!</span>Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com6tag:blogger.com,1999:blog-3110414520315056509.post-71044836549877329782017-11-08T09:15:00.001-08:002017-11-08T09:18:51.446-08:00Wednesday, November 8, 2017 - Feeling Good!Wow, that flare was way worse, way longer, and took way longer to recover from than I was expecting. I am not fully recovered, but I'd say I'm back to 95% and at a level I can live with permanently if that is in the cards. I am thinking that maybe that may be case for me as I recall something I have not mentioned before. When I was very young, likely like 10 or so, I had radiation treatments on my wrists and the top of my feet. Well, guess what areas are the still giving me grief.<br />
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Also, as a very young child, before age six, I lived in Richland, Washington and am considered a "Downwinder"; those that were exposed to Iodine-131 releases from the Hanford nuclear reactors. Iodine-131 settled on grasslands, was eaten by dairy cows, and ended up in the milk supply. Iodine-131, when ingested, ends up in the thyroid gland and can damage it. Several years ago I had half of my thyroid removed after a cancer scare. It was benign, but what is left of my thyroid is toast and I take thyroid hormones daily.<br />
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I mention all this because it may help explain why my TSW is lasting so long for me and to give a little hope for long-term topical steroid users going through TSW. Your recovery may be much quicker than mine.<br />
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No pictures, as I look terrible, but only because I am 62 years old. Haha! I am hoping to improve that with diet and exercise changes, especially since my last check-up indicated changes are needed. Nothing serious, just a few indicators pushing limits.<br />
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Now if we can just survive our current presidency. I don't like to get political on this blog, but I must give, especially to anyone reading this that is not from the US, an apology for our current, and hopefully short term, president. Trump is an embarrassment to any rational free-thinking human being, and he does not deserve to be near my daughters, let alone to be the most powerful leader in the free world. TSW is fueled by stress, and he is not helping one bit.<br />
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Hugs from Texas!Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com7tag:blogger.com,1999:blog-3110414520315056509.post-75354389364517638192017-09-03T14:41:00.000-07:002017-09-03T14:41:23.016-07:00Sunday, September 3, 2017 - Slow ImprovementA few months into this flare and I improving, although much slower than I hoped. The ever-present insane itching of hands and feet are the primary adversary at this point, but my eyes and skin elsewhere have improved to the point where I am not ashamed to be seen in public. I am no longer putting nitrile gloves on at night, nor am I taking hydroxyzene, although it seemed to make little if any difference anyway. I never resorted to using Ambien again, although it was tempting to see what crazy stuff I would do. Oh, and since I mentioned them before I feel obligated to report that the privates have mostly recovered and have reported back to duty. Life is good.Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com4tag:blogger.com,1999:blog-3110414520315056509.post-28048486740731466272017-07-09T15:53:00.001-07:002017-07-09T15:53:14.501-07:00Sunday, July 9, 2017 - 4th Year Anniversary!... and I feel like crap.Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-86966401079483850092017-07-04T15:51:00.003-07:002017-12-12T22:05:59.501-08:00Saturday, June 24, 2017 - Anniversary Flare #4<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDXvSKMzhMttqLIDcbSiIa89ZQ6a7RHPUsY82A6toaFnEb0YFRQSDrh3O7WDbwNop8d8Cv6SUTih9XBygXbwU5t9qd0PQCft4oY1YzSjc64QG6SE-tjjZ8LgHYzAjCUrpT9MPD3C1aAktW/s1600/19858412_10211420383603235_1606349031_n-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDXvSKMzhMttqLIDcbSiIa89ZQ6a7RHPUsY82A6toaFnEb0YFRQSDrh3O7WDbwNop8d8Cv6SUTih9XBygXbwU5t9qd0PQCft4oY1YzSjc64QG6SE-tjjZ8LgHYzAjCUrpT9MPD3C1aAktW/s320/19858412_10211420383603235_1606349031_n-2.jpg" width="240" /></a></div>
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<span style="font-kerning: none;">Well, I guess I deserve a bit of a setback after making claims I was "98% healed", but damn, this is turning out to be worse than last year. I am going to have to redo my chart.</span></div>
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<span style="font-kerning: none;">I went back and checked, and I did predict that I would have another flare about now, but I honestly did not feel it would be this bad, and if truth be known, I was hoping I would not have one at all. Based on how I feel right now I am guessing that I will be having a flare every year for years to come. I recall someone reading that it takes from 10% to 20% of the time one was on topical steroids to be completely cured, and since I was on them for more than 50 years, 5 years would be optimistic, and it may be another 5. Sigh.</span><br />
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<span style="font-kerning: none;">Some symptoms are worse than ever. My privates, for a way TMI example, are affected worse than ever, to the point of uselessness. This may be the hardest part to handle, so to speak, and no pun intended. I probably shouldn't mention this, but I do know quite a few TSW blokes read this blog, so I feel I should be honest. No pics though!</span><br />
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<span style="font-kerning: none;">My hands are a mess, although no deep cracks like before, more of an all-over rash that is tender and unbelievably itchy. My arms, chest, and neck are affected again to a lessor degree, along with that frantic feeling that I missed so much. The doc gave with prescription eye drops and pills for a fungal infection, but I do not think I have either and the drugs had no positive effect. Thankfully, I am not having thermoregulation issues nor am I sweating or having zingers (okay just one little one). Knock on wood. Well, not that wood. Haha! Oh, and I am taking hydroxyzene again, and it does seem to help me sleep.</span></div>
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<span style="font-kerning: none;">I am post-dating this to match when the flare-up occurred, as today is actually July 4th. My wife Robin and I have been married for 16 years today. Robin has been incredible during this ordeal and has been there for me absolutely 100%. I read so many accounts in the forums of TSW placing a burden on relationships and in this regard I could not be a luckier man. As we get older and deal more and more with her muscular dystrophy my goal is to hear her say this to me some day. That's what love and marriage is all about. In a cheesy Reno chapel in 2001 we vowed to each other "To have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part". I love you Robin!</span></div>
Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-41974645299210045272017-05-25T15:10:00.004-07:002022-03-11T21:04:05.009-08:00Thursday, May 25, 2017 - A Graph<div class="separator" style="clear: both; text-align: center;">
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This graph is a symbolic representation of my major symptoms just prior to and going through topical steroid withdrawal. It is not based on a detail log, rather it is from memory and is filtered to eliminate confusion from the "Zyrtec withdrawal" I went through before I knew what RSS and TSW was. Note that many lesser symptoms are not shown at all, such as edema (swelling), elephant skin, infections, enlarged lymph nodes, and oozing. Each major peak shown after starting TSW reflects an approximate one year cycle of major flares, each less severe than the one prior. Keep in mind that I was born with eczema and am a 50 plus year user of topical steroids across the entire strength range. You mileage will vary.<br />
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I wanted to use this graph to make a few points:<br />
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1. TSW is one hell of a roller coaster ride. I was never suicidal, but the peaks were definitely in the "just shoot me now" range. The magnifying glass thingy illustrates that although the curves shown are smooth, drastic changes can happen on a daily, even hourly, basis. The analogy is that the main curves are the rollercoater tracks, but it's a wood rollercoaster and you get shaken around a lot.<br />
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2. It is my opinion that there's not a damn thing one can do to make the ride any shorter or less severe. It is human nature to want to control one's environment, but other than anti-itch medication (hydroxyzine) and sleeping pills (Ambien) there is nothing that has any non-anecdotal evidence that it does anything at all to help. I've posted about alternative medicine before, and may again, but for now, there's a joke that perfectly summarizes the issue for me: You know what they call alternative medicine that works? Medicine.<br /><br />
3. Speaking of alternative medicine, TSW has one primary feature, that roller coaster part, that makes it perhaps the most susceptible condition one can have where false-causal relationships can be made. Let me illustrate. Consider Point A on the graph. If at this point you were to give something a try, say probiotics, you would be absolutely convinced that this change had an awesome affect on your symptoms. You'd go on Facebook TSW support groups and yell "Benghazi!", oh wait, wrong subject, you'd yell "Gut health!" at the top of your keyboard lungs and feel smug that you had made a discovery that will make you loved and admired. <br /><br />
For me, and this is a true story, about at the "Point A" time I had given up on diet changes and was eating pretty much anything I wanted. I was still eating good stuff, my wife assured that I would, but I was eating ice cream, having hot chocolate, candy, whatever made me feel that life was worth living, especially since I was losing weight due to the fact that I was a nuclear blast furnace. I decided mere ice cream was not enough, so I poured on some of that Smucker's chocolate hard shell ice cream topper crap, you know the stuff full of the bad fats that solidify when cooled, and I was in heaven, at least for the 30 seconds it took to shove it in my pie-hole. I'm not kidding, the very next day my rollercoaster car pointed down and I accelerated towards normalcy like never before.<br />
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Do I think that Smucker's chocolate hard shell ice cream topper was the reason for the sudden improvement? Of course not. But the evidence that it was is as strong as any claims I have seen for anything else, such as leaky gut, homeopathy, anti-histamine foods, alkaline water, ph balance, urine therapy, blah, blah, blah.<br />
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What could have happened if I decided to pour on the Smucker's at Point B? Well, I could just as well be convinced that Smucker's hard shell ice cream topper should be tossed in the garbage right along with my Topicort. And I'd be wrong. Well, about the Smucker's chocolate hard shell ice cream topper anyway.<br />
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Here's the bottom line: Nobody, and I mean nobody, can claim that anything they have done has had an effect on their healing. Why? Because they have no way of knowing what would have happened if they had NOT done it. This is the definition of anecdotal logical fallacy.<br />
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The only folks that could make any claims about changes are those familiar with many cases of TSW and have held their hands through the ordeal. Dr. Rapaport has done precisely this for thousands of patients and he makes the outright claim that dietary changes have no effect.<br />
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By the way, I feel fantastic but minor itching and rash have reappeared on my right hand and right foot. I am coming up on my four year anniversary and I am hoping that even though I can hardly call this a flare, it is my last one. Even if this is my steady state condition I would be okay with that.<br />
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Hugs from Texas!</span>Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com12tag:blogger.com,1999:blog-3110414520315056509.post-6258157804007077192016-11-21T09:49:00.000-08:002016-11-21T09:49:14.705-08:00Friday, November 21, 2016 - Knocking on WoodA quickie. I feel fantastic! I'm better than before the last flare and I'd say I'm 98% healed, the 2% due to a couple persistent itchy spots, the worst of which is the top of my right foot. If I scratch myself anywhere that area will break out for a few days, but so far nothing persists more than that.<br />
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I'm really reluctant to post here lest it jinx me, but then I am always saying I do not believe in the supernatural, so what the heck. I fully suspect that I will go through at least another "anniversary flare", and if it follows past ones it will happen next summer (my 4th year anniversary will be July 9, 2017), and will be less severe than prior flares, but take longer to get over. So, I am not declaring victory just yet. But damn, it feels so great to feel normal!<br />
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An interesting side note that other vets will likely appreciate. I have heard that TSW survivors acquired a sort of PTSD, and I always thought that was a bit out there. I mean, sure, it has been a tough road at times, but nothing like many, if not most, folks have gone through or, in the case of my wife Robin, will go through for the rest of their lives. Yet when my sister in Seattle called me and asked how I was doing, I had an emotional meltdown. I also find it difficult to post here, even though I have much to talk about, and many more watches to show! Haha!<br />
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That's it for now other than to wish everyone an awesome holiday season and may great healing be coming your way! Hugs from Texas!<br />
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<br />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com8tag:blogger.com,1999:blog-3110414520315056509.post-17365212234498916872016-07-03T15:43:00.001-07:002016-08-11T09:58:21.834-07:00Sunday, July 3, 2016 - 3 Year Anniversary FlareWell, a few weeks ago I started getting worse, especially on my hands, and I was hoping it was due to the heat and/or stress from the Blue Goji Madness competition, but after coming home and returning to normalcy, the symptoms have got worse. My eyes are especially annoying, and I have been to both my GP and ophthalmologist, each giving me drops and ointment, but they have continued to get worse. My hands are a mess and a rash has returned to the inside of my elbows. Shit. I feel okay internally, with no signs of temperature control problems, so I am really hoping this will be mild. <br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com5tag:blogger.com,1999:blog-3110414520315056509.post-52298910952636223692016-06-14T10:11:00.001-07:002016-06-14T10:17:59.209-07:00Sunday, June 12, 2016 - Goji Madness!<br />
Here's a nice little distraction...<br />
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About a year ago I felt good enough to start exercising again, but I was having trouble getting motivated. I can't recall exactly how (I think it was one of those ads all over the place on Facebook), but I ran across a product called "Goji Play" from a company called Blue Goji. It has great reviews so I spent $100 or so and got it. It's basically a set of controllers that can be strapped to a piece of exercise equipment, in my case an elliptical, that allows you to play games on your iPhone or tablet will exercising. There are quite a few dedicated games available and my favorites are the lane-changing type where you are a character that is racing along avoiding obstacles, collecting coins, racing against other characters and the like. The buttons on the controllers change your direction or make you jump and your speed is determined by how fast you run or spin on the piece of exercise equipment. What is amazing about it is that the games require just enough concentration and entertainment that time literally flies by.<br />
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Earlier this year Blue Goji introduced the next generation of controllers and as a promotion created a contest, called "Goji Madness". Contestants could enter in one of four categories, open, over 60, BMI over 28, or veterans. The top 64 contestants, 16 in each category, would go through elimination rounds with prizes at each round. After 3 rounds there would be only 4 contestants left, one in each category, and the four would be flown to New York City where the semifinal and final rounds would take place live. I entered the contest in the "Seniors Rock" category not thinking much about it, and was totally surprised that I made it to the elimination rounds. I initially thought the email notification was spam and almost deleted it. Elimination rounds would be held each weekend where I would be paired up with another contestant with the winner of 2 out of 3 games would progress to the next round. Well, I won the next three rounds and I am one of the final four! My wife and I will be flown to New York City for the semifinals where the final winner drives away in a Chevy Camaro!<br />
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What's amazing to me about this, other than an old fat guy made it this far, is that a year ago I was entering the infamous 2-year flare and was shivering, sweating, unable to sleep, itching like a mofo, covered with oozing, cracking, and flaking skin and wishing life away. Even though I am going through a mini-flare right now (limited to my hands) I generally feel fantastic and am ready to take on the other contestants!<br />
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By the way, the folks at Blue Goji have been incredibly nice! <a href="http://www.bluegoji.com/gojimadness">http://www.bluegoji.com/gojimadness</a><br />
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<br />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com4tag:blogger.com,1999:blog-3110414520315056509.post-56656765527020210822016-04-30T09:46:00.001-07:002016-04-30T11:02:39.590-07:00Saturday, April 30, 2016 - The Aron Regime - A Conversation with a SupporterRegarding my Fukitol List Item #2, the "Aron Regime", the following exchange took place between Jeff Kastner and myself on the "Topical steroids - TSW / TSA / RSS - an alternative (AR)" Facebook page. It happened late last night and when I got up this morning I was banned from the group and this conversation no longer exists. I figured this would happen, so I copied it before I went to bed. Here it is. I do not know if Jeff ever responded to my final question. Jeff, if you read this, please post your answer. For those not wanting to plow through the conversation, let me summarize it for you. Jeff and Dr Aron believes that all problems associated with the nonexistent "TSW" is due only to an underlying staph infection that makes the eczema worse. My question to Jeff is that most of my symptoms that I have experienced for the last three years are not associated with a staph infection in any way. What caused those symptoms?<br />
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Note: Jeff brought up several things that I intended to address, such as Briana's experience, my comparison to heroin addiction, TSW vets, etc. Also, if I were to do it again I would be more careful with my words. It was nearing 3:00 in the morning and I'd had a couple margaritas. :-)<br />
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<span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/groups/Etsin/permalink/1118173341566732/" style="color: #9197a3; cursor: pointer; text-decoration: none;" target="">April 8 at 7:44am</a></span></div>
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Just some odd questions I've been thinking lately. So all of us know a little about tsw right? My question is, since it exist and actually affect thousands of people, although healing process takes LOTS of time, but you can still see improvement in them and why does that happen ( the healing) ? Since the staph is out of control without antibiotics?</div>
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PS not trying to confuse or give any wrong info. Just want to know more about what you guys think.</div>
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=733057109&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/michelle.zaparaniuk?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Michelle Zaparaniuk</a> <span data-ft="{"tn":"K"}">well first off I think staph is a problem for most but not all, also those TSW people are still often on other meds...just not steroids, the successful ones often radically change diet as well and lastly I think very few actually totally heal. Overall it is a lot if unnecessary suffering in my opinion...I have done TSW and Dr. Aron's plan and know what I would choose..just my opinion</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}"><a class="profileLink" data-hovercard="/ajax/hovercard/hovercard.php?id=733057109&extragetparams=%7B%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/michelle.zaparaniuk?hc_location=ufi" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Michelle</a> has made some excellent points and motivated me to respond. <span class="emoticon_text" style="clip: rect(1px, 1px, 1px, 1px); height: 1px; overflow: hidden; position: absolute; width: 1px;">smile emoticon</span><span class="emoticon emoticon_smile" style="background-image: url(https://static.xx.fbcdn.net/rsrc.php/v2/yx/r/pimRBh7B6ER.png); background-position: 0px -340px; background-repeat: no-repeat no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: top; width: 16px;" title=":)"></span><br /><br />I don't think TSW exists at all. It's a social network driven phenomenon but there's zero proof it exists. The doctors who brought TSW to the public were witnessing the same thing that every doctor, at that time and today, was seeing; when you give TS without addressing the staph element, the skin gets worse. When I've looked into each doctor's approach at that point, there's nothing special any of them did.. no studies, no specific protocol to prove/disprove TSW. Instead, they speculated.. and just went with it. I even contacted Dr. Rapaport and asked him about his specific process of discovery and he replied that he saw what the steroids were doing so he knew people needed to stop taking them - that "it wasn't too hard to figure out". That's bad doctoring 101. He created this network of fear because people naturally trusted a doctor must know more than they do but in fact, he's simply got it wrong - as most all other doctors agree. He then put extra work into creating papers to try and create a name for himself instead of spending that time trying to scientifically affirm his theories - which is what he should have done.<br /><br />So to your question.. it's a good one and one I've considered as well. First off, consider that the majority of people going through TSW do not heal. If you check out the forums, there are people who have been doing the process for years and they're "ok" with raising the time limit after it doesn't work. "I thought I would heal in 2 years but I guess it might take 3" is a pretty common thing to hear. 3 turns to 4 and so on. Many people talk about how they "get better" but is that healing? No.<br /><br />Why do some people get better? It's quite common to see people finally doing all the things they should have when they start down TSW. They hear about the pain and suffering and they decide to 100% commit to diet (often for the first time) and stop eating tons of sugar, greasy fried foods, etc. They "get better". Also popular to TSW now is moisture withdrawal. What happens when we stop providing staph the means to spread so easy while fine-tuning diet? They "get better". How many people start taking other medications they never took before and suddently, they "get better".<br /><br />You can take any percentage of the population with skin problems and evaluate them over time. Some of those people will be better after time, regardless of what they do. That's the nature of skin. In time, it improves for some and gets worse for others. The mistake with the TSW phenomenon is that people assume it's a cause/effect relationship of TSW - because the "lucky" percentage who go without treatment and "get better" will post pictures and say "hey look what TSW did for me?!" You see it often in the TSW groups that someone will post and several comments will follow with "Wow.. I was getting ready to give up but you have given me hope so I'm sticking with it" or "that's just what I needed to see today as I was having a really bad day". It spurns people on, but.. the more important question: How many people are actually healing from TSW? From the time I've spent in those groups, it looked like maybe 10% overall would simply improve and very few of those would actually completely heal. That's quite a deviation from the promise that TSW will completely heal. Why is there a "Long Term Vets" section on the itsan website where people admit being in TSW for over 7, 8 and even 10 years.. and still not healed?!<br /><br />It is a fact that most people going through TSW will not heal. Some may improve for reasons cited above or other reasons none of us may know (environment/geographic location/food choices or vitamins specific to that single person, experimenting with other drugs, etc) but most are suffering for an imaginary condition of "steroid dependence". Doctors who purport the condition/success of TSW (and there are very few) without really understanding it have a lot to answer for. Unfortunately, it's something that will further snowball until the treatment of AE is changed, antibiotics are included as used in the Aron Regime, and people are no longer needing to look for a reason why their skin in seemingly worse after conventional treatment. The "all natural" allure of TSW sounds intriguing after conventional treatment fails. Unfortunately, it's not the answer. If TSW was true, there could not be thousands of people who start the Aron Regime (many of them, months and years into TSW) showing zero signs of steroid dependence - and weening off of topical steroids in time -- and all the while healing.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}"><a class="profileLink" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?hc_location=ufi" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Jeff</a>, I am nearing my third year of TSW and I have been lurking in this group for a while, afraid to speak up lest I be banned from the group. The Aron Regime is fascinating to me for several reasons and I would like to stick around, not only to learn more about it, but also to defend TSW only when there is mis-information spread about it. I must say that your post is almost as far from the truth as possible. I am one of those "long term vets" that you speak of, and I have heard and done most everything related to TSW. Diet changes? Been there, done that. Infection treatment? Staph, MRSA, yeast, been there done that. Are you, or anyone else, interested in what I have to say? If not, and I am banned, my intentions are to create a Facebook group where there are no limitations on who can join and what is posted. There's a need for that in my mind because anti-TSW's are banned from TSW groups and anti-AR's are banned from AR groups, so a lot of mis-information is spread on both sides, as is evidenced by your post. I would much rather engage in a constructive conversation here. I belong to ITSAN of course, but I am not officially associated with it in any way or form, and in fact many of my posts have been removed from their forum. I merely seek truth. Do you?</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}">Thanks <a class="profileLink" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?hc_location=ufi" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Jeff</a>, I really appreciate that. I will wait, however, until an ETSIN Mod agrees.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}">In the meantime, I'll give you a little background. 61 years old, born with eczema, and used topical steroids since they were introduced. The hydrocortisone that you can by in a 3-pack at Costco was a prescription drug back then, and was considered strong stuff. I was told as a child I would grow out of it, but never did. I had moderate eczema primarily on my fingers that was fairly well controlled with topical steroids that would increase in strength as years went by. About 13 years ago I moved from Seattle to Dallas and my eczema got worse, covering my arms. My dermatologist prescribed strong cream and even stronger shampoo (clobetasol). Eventually, nothing worked and I started the classic RSS symptoms. It took me a year or so of suffering and going through several dermatologists until I found ITSAN. I literally had every single symptom. The next dermatologist told me I could not go cold turkey and must taper off (sound familiar?) and convinced me to go even stronger creams and shots. When that didn't work he did a skin biopsy that showed a "drug reaction" (and no infection) and he literally walked me to the door and told me to come back when I needed steroids. At that point my GP sent me to the experts: The dermatology department at UT Southwestern, one of the leading dermatology medical facilities in the US. I consulted with an intern and the University Dermatology Department Chair, and they agreed to help me through TSW, even though they chose their words very carefully, as 3 years ago TSW was not the documented condition it is today. It's been a rollercoaster ride, but they were amazed at my progress. Several times I have been tested for infections. Sometimes positive, sometimes negative and when treated it made no difference to my condition at all.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}">You mention that positive results are the result of dietary changes, but Dr. Rapaport has stated that diet changes make no difference at all, and I am an example of that. I tried a few times to eat better, but it made no difference and I essentially ate like a pig through the worst parts. I lost 25 pounds because my body was pouring out heat. I was a blast furnace that downed milkshakes, hot chocolate, sweets, anything that gave me comfort, and I still healed. To be honest, the ITSAN support groups drive me nuts as everyone seems to want to try diet changes, probiotics, homeopathy, salt baths, all kinds of crap. It's a normal human response to try to make themselves feel like they are in control. They are not. If you go TSW, it runs its course in its own time.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}">You and I sound like we share very similar opinions about diet. I am not a believer that diet will affect eczema for most people. It certainly didn't for my son and we tried everything. What I was saying above is that a small % of people going through TSW get better and they tend to be all the motivation for the vast majority who never heal. These healed people tend to be people who make several lifestyle changes at once.. and they see an improvement.. and then they holler how TSW works, when it has nothing to do with it. But there is a percentage who will improve with diet. I see it in Eczema Parent FB group every once in a while.. .where a Mother shows a before/after and excitedly announces that "all I did was remove dairy" or something to that affect - and the results do look impressive. Lots of causes for eczema, right? My point is that it works for some but I definitely believe the majority to be small. I will then see that Mom telling everyone to "stop dairy and you'll be healed!" (as an example) but like you, I just have to shake my head because I know that diet will not affect eczema for most. How many times do you hear to "heal the gut and the skin will follow!" ? If only it were that easy. It works for very few. I say let's heal the skin (the largest organ) and the gut will follow. And homeopathy? Salt baths? Stephanie's magical balms? You may as well rub kool-aid on your skin.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}">Yup. Homeopathy is complete bullsh*t. As is most, if not all, alternative medicine. I do not agree with your assessment that only a small percentage of those going through TSW heal. My personal experience and the majority of those I am in contact with going through it DO heal. Not sure where you get that information. I do agree that it takes many people longer than expected. Not me though. I knew, as a long time steroid user that it would take me a very long time. It also depends on your definition of "healed". I describe myself as "95% healed" because I look, act, and feel completely normal, but the tops of my feet and fingers still have itching issues. Nothing I can't handle, and otherwise I feel fantastic, and they are slowly improving. And I have introduced no steroids of any type into my body since July 9, 2013. Zero. There's a phenomenon related to TSW that I have experienced with TSW that may lead to your conclusion that not very many people heal: It's a horrific experience, and once you get through the worst parts and start to feel normal again, the last thing you want to do is re-live it by going on FB or forums. I have a blog that I have abandoned for months because I do not feel like going "back there". Maybe its a form of PTSD, I don't know, but it takes effort. Every once in a while a statement like yours is made on the ITSAN forum and the result is a people coming back and saying things like "sorry, I am healed and find it difficult to come back here to post" or some such. There's a lot of healed people Jeff. I stay active partially because I have become a bit of an anti-steroid activist and have actively taken on companies like Baby Pibu that markets a hydrocortisone product for babies.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}">I have an itsan forum account and a best friend who's FB account allows me to visit the TSW forums quite frequently (though I've become quite bored with it in the last few months so rarely do anymore). I've probably been a member longer than most everyone in there. You can go there now and find very few "I'm healed" posts. I have seen the same people posting for the last couple years. I see kids that could have been healed in 2 weeks, with quality of life fully restored, still suffering after several years, because their parents are convinced that TS are the issue and they're simply not. It's a phobia and unhealthy. What's happening is a culture is being created whereby it's "ok" for children to suffer for years because they're "warriors". None of these kids care about being a warrior as much as their parents do. Topical steroids aren't hurting these kids - the bacteria is when the inflammation is reduced. It's allowed to run rampant so then, of course the TS get blamed. How do I know? Not a single kid, out of hundreds who were in TSW, have come over to the Aron Regime and suffered from any kind of dependency. I don't believe the junk about people moving on. The Aron patients are usually the most severe around. I will contend that when TSW gets to be too much for some, that's when they go to Dr. Aron. These are the worst of the worst.. and not a single person is affected by TS? And why do these people, most of who were equal or worse than most TSW people, stick around? There are thousands in the group who extol the Aron Regime. Why are there only dozens in the TSW group who stick around? Why do I see kids in there who are 4 years in TSW and still suffering from steroid dependency? It's because they're suffering from a wrong self-diagnosis (most often a Mom who thinks all natural is the best way to heal). Why are there people 7, 8 years and more in the itsan forum and still suffering?</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}"><span class="UFICommentBody _1n4g">Honestly Jeff, I think there is a fundamental difference between children going through TSW and adults. Being an adult, obviously, I cannot vouch for, nor do I personally know, any children going through it, and when I talk about those successful with </span></span><span style="background-color: transparent; color: #141923; font-family: "helvetica";">TSW, I'm referring to adults. That's one of the reasons I don't blow off AR, and you will not get arguments from me about AR regarding children. I am not convinced it's not the way to go if you are a child. I'm not advocating it either, mind you... I just don't know. One of the reasons I say this is that eczema is a childhood disease. I don't know how many times I was told when I was a kid that I'd grow out of it. Seems if a child has a terrible experience with topical steroids, however he or she gets through it, whether it is through TSW or AR, he or she will likely still have eczema until they really do grow out of it. I am convinced, however, that what I have had my entire life since adulthood is not eczema, but rather it was steroid-induced-eczema. I am fully convinced that my only recourse was TSW. When I am 100% healed, I am convinced I will not have eczema at all anymore. I already don't where I had it before. The palm side of my fingers, where I had eczema my entire life is completely normal. Not only that, but the skin thinning that I always had is going away. My hands are durable like they have never been before. I watched all those AR promotional videos, and they were all children except for one adult, and that adult was still on steroids and antibiotics. In fact, every testimony I have ever heard save one or two regarding AR is that they are still on it. I guess I don't quite understand how this is different than putting a heroin addict that is going through terrible withdrawal symptoms back on heroin. Can you put them back on heroin then slowly reduce the dose of heroin to get them cured? Perhaps you can. But cold turkey worked for me. Like I said when this conversation started, I do not intend to discredit AR, but only to give TSW a voice as it has worked for me. And the "moving on" thing that you refer to as "junk"... I guess you just called me a liar, but hey, that's okay Jeff. I know what I feel. And blaming it all on bacteria is junk to me. Virtually everyone I know going through TSW, including me, has been repeatedly tested for infection and the treatment, when it was warranted or not, has made no difference. We have staph and bacteria on our skin all the time. All the time. If you swab it it will show up positive. I've had actual bacteria and staph infections before and it's a totally different animal that usual TSW symptoms. Dr Aron's treatment isn't effective because of the antibiotics, its because he is putting the addict back on heroin. Did you watch The Doctors show with Brianna going through TSW where they were all smug at the end for determining all her symptoms were the result of infections? It was edited to make her look like she was so thankful they figured out what was wrong. She has continued to post, as I am sure you are aware, and the result of the treatment for her infection? Made no difference at all. Just like me.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}">I actually agree with most of what you say.. including the fact that many adults way be dealing with something else, though I don't believe it's dependency. For adults suffering, they are usually the worst of the worst.. people with severe skin. I think many adults have used too many TS over the course of a lifetime. They used to prescribe the stuff like candy.<br /><br />Don't get offended now. I had to smile at a couple of your above comments where you told me my post was as far from the truth as possible. I thought.. "Hmm... you mean, you have a different opinion?" It's easy to feel attacked when you view the complete opposite side. I don't agree with TSW at all and think it's an imaginary made-up condition, so that is true.. and I can't hide how I feel about that... but no disrespect to you. I must confess that when I used the term "junk" it's because your comment immediately reminded me of what Joey continually says in an effort to keep morale up.<br /><br />Heroin and TSW? I see that comparison drawn a lot in the TSW groups a lot. They are nothing alike. Heroin is medically proven to be highly addictive - an opiate that triggers dopamine. TS are only thought to be by TSW groups and Dr. Rat, who can't even give an explanation as to why, other than offering a far-fetched theory on nitrous oxide levels. There's nothing in the medical literature anywhere that can prove TS is addictive in any way.<br /><br />To your question though.. here's how it's different. My son suffered severely under conventional TS prescriptions. He would get burning inflamed skin immediately following a round of TS and from the time we started TS (at 2 years old), the skin only got worse after every round of TS. It was 10X worse in the 3 years that followed. When I found Dr. Aron, he said "stop doing TS! You're making it worse. That's highly infected!" In one week of combining TS with antibiotic, he was sleeping through the night for the first time ever. We put 6 apps a day on, then 5 and 9 1/2 months later, just as needed. Today, I might put an app or two on every couple months. We don't think about eczema. He lives life and loves it. He's not some heroin-like addicted TS addict. That is a TSW way of thinking only. Doctors don't think that way, nurses, people using the Aron Regime, my current doctor who knows nothing about AR. It's a belief system instilled in the TSW community. There's no merit. My final thought on this.. if over 5,000 people in the group are using the Aron Regime, and not a single person is having a TS side effect, why do people care.. even if they want to call that addicted? If my son maintains perfect skin, has no side-effects and a full quality of life, using TS once or twice every couple months, feel free to call him addicted!<br /><br />Brianna is a perfect example. I have followed her posts and she seems very sweet. I've always liked her but her problem is bacteria. The Doctors were right but she has gone out of her way to try and prove them wrong. When I read her posts, I can tell where her line of thinking has gone wrong each time.. People do that when they try to convince themselves they know what is best. She had a doctor swab her and prove to her and she was immediate to say in the TSW groups that they were wrong.. on the same day the video was released before she even checked anything out. She had already convinced herself. If she got on the Aron Regime, I would be willing to bet her pain and suffering would be gone for good. She wouldn't be addicted but would be managing with a medical prescription. No side effects and quality of life restored. If that's addicted.. sure beats suffering the rest of her life for a cause.<br /><br />Keep in mind that there are people on the Aron Regime (AR)who were diagnosed TSA by Dr. Rap himself and they healed up almost immediately on AR after TSW didn't work at all.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}"><span class="UFICommentBody">Here's a better explanation on the staph. Of course we have it on our skin all the time.. but much different for those with eczema - and it requires a completely different (longer primarily) method of treatment. <a class="" dir="ltr" href="http://l.facebook.com/l.php?u=http%3A%2F%2Feczemasense.org%2Feczema-and-staph%2F&h=hAQGz9zIK" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://eczemasense.org/eczema-and-staph/</a></span></span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}">Not at all. I've actually communicated with Dr. Rap. He's completely one-sided in his opinions and he and I had some dialogue going for a while. When I continually questioned his methods, he went quiet. His papers have no verifiable evidence. His latest 'white paper' looked like a high-schooler wrote it... but I read it.. every bit of it. I'm astounded people believe anything he has to say.<br /><br />I thought you were interested in the truth? You're black-balling a site because it goes against your belief system? That's a report on how staph/eczema works... backed with scientific papers.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=508056349&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/jeffkastner?fref=ufi" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">Jeff Kastner</a> <span data-ft="{"tn":"K"}">I just noticed you weren't in the Dr. Aron site either. I guess I'm wasting my time here. You won't read sites because they promote Dr. Aron and you don't join them because of that either? It sounds like you don't want so much the truth as having it your way. Here's the thing.. I've read and studied everything you have (probably more) but you've read nothing I have because of your bias. That's not a guy looking for the truth. Come back after you read up and we'll have a real discussion. Not being rude but you can't possibly understand all of this if you haven't looked into it for some time.</span><br />
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<a class=" UFICommentActorName" data-ft="{"tn":";"}" data-hovercard="/ajax/hovercard/hovercard.php?id=1171682651&extragetparams=%7B%22is_public%22%3Afalse%2C%22hc_location%22%3A%22ufi%22%7D" dir="ltr" href="https://www.facebook.com/david.bupp" style="color: #3b5998; cursor: pointer; font-weight: bold; text-decoration: none;">David Bupp</a> <span data-ft="{"tn":"K"}">So Jeff, what do you think I have gone through for the last three years? I have been repeatedly tested for infections by the country's leading dermatologists and sometimes they turned up positive, usually negative. Whenever they were positive, I followed the doctors recommendation and took the antibiotics. It had no effect on my symptoms. None. Most of my symptoms were not indicative of infections anyway. The itching, the lack of temperature control, the edema, the elephant skin, the insomnia, the zingers, the changes in hair (I used to have straight hair, it's curly now). Are you saying that all these symptoms, all of which I have never had in my entire life, were due to staph infections that the doctors could not find and that medication did not affect? I am cured now, and the only thing I did was stop steroids. That's it. No diet changes, no probiotics, no vitamins, no herbs, no colloidal silver, no blood-letting, no voodoo, no prayer, not even a conversation with Dr. Rapaport. And most important, no steroids of any kind. You say I am black-balling AR. I am not, and in fact and telling you it may very well work for children. Heck, even for adults, although I have not heard of any that are totally free of steroids. They may be a ticking time bomb. I don't know. Time will tell. What started this whole conversation was you blowing off TSW and mis-representing ITSAN members, not me blowing off AR, because I haven't. I am happy for your son. You hurl insults. I don't belong to any AR sites other than this one simply because I'm not going through AR. I've gone through TSW and simply wanted to let people know that people like me exist. The whole staph infection thing makes no sense whatsoever in my case and has been explicitly ruled out, as it has been for many others going through TSW. I'll ask again: What do you think I have been going through for the last three years?</span><br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com15tag:blogger.com,1999:blog-3110414520315056509.post-30590939133220579182016-02-05T15:14:00.001-08:002016-02-05T15:50:32.635-08:00Friday, February 5, 2016 - Fukitol™<div class="MsoNormal" style="line-height: 15.54px; margin: 0in 0in 0pt;">
<img alt="" id="id_4c0c_2c4f_8f98_752c" src="https://lh3.googleusercontent.com/-HgiIBUqYLUc/VrUy0SOqwtI/AAAAAAAAAdE/o_mcHC1bWjg/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" /><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Now that I am on the road to recovery and would say I am about 95% there, I thought I’d share some of what I have learned long the way.<o:p></o:p></span></div>
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<o:p style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </o:p></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Quick background recap: 61 year old male that has dealt with mild/moderate eczema my entire life. I have used countless tubes of OTC hydrocortisone for general control, with a trip to the doc to get stronger stuff when the eczema got worse. When I moved from Seattle to Fort Worth in 2003, my eczema got worse and I was prescribed stronger steroids and Protopic. About 3 years ago I started losing control of the rash and thought it was Zyrtec withdrawal. Several months later and not improving I discovered ITSAN and immediately knew that I had RSS. Several dermatologists later, including one that convinced me I could not go cold turkey, I found a dermatologist at University of Texas Southwestern that was sympathetic and agreed to help me through it. On July 9, 2013 I totally quit all steroid use and have been on the typical TSW road through Hell ever since. I have had several flares, including a doozy at about 2 years and am now almost completely healed. I expect another flare or two in as many years, so I am not declaring victory just yet, but I feel pretty damn great and have a new appreciation of how awesome “normal” is.<o:p></o:p></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">During the battle, I have dealt with incredible people and yet have had my faith in humanity shaken to the core. Here in list form, and in no particular order, are some of the OPINIONS I have formed. Depending on the response and my state of mind (I’m in Fukitol™ mode right now), I will expand with details.</span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">ITSAN and its members are awesome.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The Aron Regime is a bizarre mind-fuck that will result is massive future suffering.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The pharmaceutical industry is corrupt and driven by pure greed.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The alternative medicine industry is corrupt and driven by pure greed. </span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">False causal associations with TSW (example: dietary changes) is rampant and unjustified</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">“Moisturizer withdrawal” is bullshit.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Special diets and fads (example: "leaky gut") are bullshit</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The Placebo Effect is strong and drives most scams.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Topical steroids are an easy fix and doctors love easy fixes.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Allergy testing during TSW is worthless.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Organizations lose neutrality once they become associated with sponsors or endorse products.</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Those that make it through TSW will be better human beings as a result, especially children.</span></div>
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</ol>
Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com3tag:blogger.com,1999:blog-3110414520315056509.post-77079836360437673802016-01-08T10:58:00.001-08:002016-01-08T11:18:57.101-08:00Thursday, January 7, 2016 - Watch-o-the-Gosh-I-Dunno and Happy New Year!<img alt="" id="id_df3d_9865_f1ba_6d2e" src="https://lh3.googleusercontent.com/-VywhTdhg-gg/VpAG4C7ELyI/AAAAAAAAAcs/q8Yl6p60DI8/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" /><br />
<br />
<br />
With thanks to Debi (you know who you are!) for the incentive to post, here's my latest horological addition! My daughter got me this for my 61st birthday and it is my new favorite. It's a Seiko Coutura Perpetual Solar. I have a weakness for completely analog watches <a href="http://davestsw.blogspot.com/2014/11/tuesday-november-18-2014-watch-o-day-er.html" target="_blank">(see Week 6)</a> and particularly like how this watch shows the date. The normal time seconds are shown in the sub-dial at 9:00 and what <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">would normally be the second hand is showing the date. It also serves as a stopwatch second hand when the watch is put in stopwatch mode. The day is indicated by the pointer on the 12:00 sub-dial (that also shows the solar power reserve when in stopwatch mode). The sub-dial at 6:00 is very unusual in that it shows the time in military time with 24 hours being one revolution of the hour hand. Probably can't tell from the picture, but it shows the time as being 2:23 am. More on that later. This sundial also serves as an alarm clock, but the frequency of the alarm sound is almost completely blocked by my tinnitus. By the way, this a relatively expensive watch, and how my college student daughter managed to get one will be left to my wild imagination.</span><br />
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<br />
Oh, and I can wear my wedding rings again now too! I must say, this one compliments the watch quite nicely. :-)<br />
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<br />
<span style="-webkit-text-size-adjust: auto;">As far as how I am doing, I have had minor setbacks in rashes on hands and feet with the subsequent itching (not sure which is cause and effect) but nothing like a flare or anything and I continue to otherwise feel great! I got in the habit of staying up till the wee hours over the holidays and am having some trouble getting back on schedule. The holidays were awesome, and I hope that you TSW Warriors out there have a great 2016 with great healing.</span><br />
<br />
<br />
<span style="-webkit-text-size-adjust: auto;">One more item I thought I'd share since I have mentioned my mom on here before. I had a birthday over the holidays and received a package with two gifts from my oldest sister today. One was a small urn containing some of my mom's ashes, which blew me away because I thought I helped spread all of her ashes over Odell Lake in Oregon during the summer of 2014. There was a second gift that is my favorite gift of this millennia. My mom was a really good cook and had some special recipes that she held close to her heart. Things such as Yorkshire pudding, Hungarian Goulash, Chicken Tetrazinni, Norwegian cookies, and the like. Karen made copies of her original hand-written recipes and put them in a recipe box decorated with pictures of my mom with me and my family. I can't tell Karen or anyone how much this gift means to me. Thank you.</span><br />
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<span style="-webkit-text-size-adjust: auto;">Hugs from Texas!</span><br />
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Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com1tag:blogger.com,1999:blog-3110414520315056509.post-29483438236748717512015-12-16T10:07:00.001-08:002015-12-16T11:08:41.684-08:00Tuesday, December 15, 2015 - Watch-o-the-Whatever and Good News<img alt="" id="id_1efc_965f_b8e5_b2ac" src="https://lh3.googleusercontent.com/-vv-9aLFgfyw/VnGoQci0a9I/AAAAAAAAAcU/EEuI-vctzJU/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" /><br />
<br /><br />
First, and least important, the watch. It's an Adee Kaye quartz chronograph purchased a few years back on eBay for like 50 bucks or something. I am a huge fan of Breitling watches and this watch, although not a fake, is "heavily inspired" by the Breitling Chronomat Longitude Waverider, which was made from 1993 to 2003 and cost thousands. The Adee Kaye version is actually pretty good quality with a Japanese movement and solid stainless links. It has a circular slide rule that is cool but fails the basic quality test in that the outer and inner scales do not line up right. If, for example, you do some simple math and, say, multiply 6 by 2 you get about 11.8. That said, I have never once in my life ever needed to have a functional circular slide rule on my wrist. Good thing. Anyway, with it's handsome good looks and red face, I hereby dedicate this as my official Red Skin Syndrome Watch and will serve as a reminder of the approximately 3 years that my life has been altered by topical steroid addiction. So far.<br />
<br /><br />
Okay, time to get a little personal. Yesterday was my wife's birthday and we had a really nice time. We went to our daughter's home and spent quality time with the grandkids. We all went to her favorite Mediterranean buffet for dinner. Robin's muscular dystrophy is thankfully progressing at a very slow pace and although she is exhausted, she did well. Before hopping in the shower to go to bed, I have a little routine where, and sorry if this is a little gross, I grab a set of tweezers and pick off skin flakes over the bathroom sink so I can rinse them down the drain. I'm sure other TSW warriors are very familiar with such a routine. Well, I checked myself over, and there was... nothing. My arms had gone through a small flare a few weeks ago, and the problem spots were completely healed. I looked at my skin and realized that, yeah, it looks bad, but not because I have TSW symptoms, but rather because I have 60 year old skin! It occurred to me that this was the first day in 30 months of TSW that I had a completely normal day. I lost it in a wave of mixed emotions, not only happy that I am so much better, but feeling a little guilty that what I have is temporary yet the MD that Robin is dealing with is not. If you are dealing with TSW, remember this. It will be over, and when it is you will appreciate your fragile life more than ever.<br />
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I am not naïve enough to think that this fight is over. I do feel, however, that the war has turned a tide and victory is inevitable. Sure, there will be a few skirmishes if not a big battle or two left to win, but I got this.<br />
<br /><br />
Hugs and Happy Holidays from Texas!<br />
<br /><br />
<br />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com3tag:blogger.com,1999:blog-3110414520315056509.post-42002940307011672372015-11-06T19:47:00.001-08:002015-11-06T19:47:56.205-08:00Friday, November 6, 2015 - Watch-o-the-Week - A Huge, Beastly, Bulging WatchYay! It's been nearly a year since I have been able to wear a watch and I wore one to work today! I even wore a short sleeved shirt! Ermagherd!<div><br></div><div>On my improving wrist today is an Invicta Speedway Chronograph that my daughters gave me last June for Father's Day. They knew I wouldn't be able to wear it yet, but thought I could use some encouragement. They were right. It looks pretty big in the picture because it is, well, and insert Donald Trump voice here, huuuuuuuuuge! I just put it on the kitchen scale and it weighs nearly half a pound! Interestingly, it has a silicone strap and is extremely comfortable. </div><div><br></div><div><img id="id_dab4_937a_43be_6c" src="https://lh3.googleusercontent.com/-_G-laiM0zow/Vj10Zj0jjzI/AAAAAAAAAbs/_N6DEmN8Qlo/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"><br></div><div><br></div><div><img id="id_e98b_1b63_ddf9_d8a7" src="https://lh3.googleusercontent.com/-ExsOIzjiIj0/Vj10aRAvV0I/AAAAAAAAAbw/ouwl1qx4his/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"><br></div>Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-50710240733047473142015-10-14T19:57:00.001-07:002015-10-14T21:06:58.646-07:00Wednesday, October 14, 2015 - An Update UpdateI'm not superstitious, but still I am hesitant to post that I am better, lest it jinx me. Oh well. I'm better! Not as good as I was before the 2 Year Turbo Flare, mind you, but I have been slowly improving in every way. I tried to repeat those same lovely pictures below. <br />
<br />
A few other things have happened since the last post. First, my UV-B light box stopped working because the Super Secret Code that I get from the doc to get the machine to work expired. I called the UT Southwestern dermatology phototherapy department to get a new Super Secret Code and they told me I'd have to see the doc first. So in I went. She was as friendly and elusive as always. She was worried about infection, so took a swab from my legs and gave me an antibiotic prescription. I haven't heard back about the results, but I'm pretty sure I have not had an infection. She wants me to do "soak and wrap" or somesuch where I soak in the tub, then slather on vaseline and wrap myself with damp cloths. I said I'd do my best. The closest I've got is that I wear cotton gloves with nitrile gloves over them at night since my hands have been super crispy. I gave her the name of Dr. Rapaport's blog (www.red-skin-syndrome.com) and she promised to check it out. Honestly, a complete waste of time, except I did walk away with a new Super Secret Code and I am bathing myself in the lights from the gods again.<br />
<br />
A few days later I woke up with my left eye glued shut and surrounded by little blisters. I've had eye infections before, but never with blisters, so i called my GP and he wanted to see me right away. So in I went. He was pretty darn sure I had shingles. Damn, talk about adding insult to injury. He gave me Valtrex and sent me to an ophthalmologist right away as he was concerned the shingles might affect my eyeball. So in I went. The optho-doc confirmed the shingles diagnosis and tested my eyeballs for glaucoma and they are fine. I was happy about that as I have heard that long term steroid use can cause eye problems.<br />
<br />
When I got home I immediately looked up photos of shingles around the eyes and by golly, that's exactly what it looked like. I crossed "get shingles" off my bucket list and resigned myself to added misery. One thing I learned about shingles is that it is the chicken pox virus (which I had as a kid) that lives in the nervous system. The nervous system is split into right and left sides, so if shingles crops up, it is virtually always on one side of the body only. Well, the next morning I woke up, un-welded my left eye and checked myself in the mirror. After the initial horror I noticed something interesting: I had blisters showing up on the right side! Yay! No shingles, just another symptom to add to the TSW symptoms list. Over the next few days the infection and blisters went away and i am back to my former handsomeness.<br />
<br />
Another exciting adventure: When Robin and I went on a cruise last spring I noticed my skin felt better after being in the ocean. So, a few months back I bought an Intex Purespa inflatable hot tub (about $330 on Amazon) with the idea that I would reproduce ocean water. I did some research and to duplicate the saltiness of the ocean i would need to add 60 pounds of salt to the 200 gallon hot tub. I ordered Pacific Ocean sea salt from Amazon and in it went. It was awesome. Nothing like 104 degree bubbling ocean water to sooth the itch and make me feel normal. Well... a couple weeks went by and other than having to replace skin-flake-plugged hot tub filters all the time I was really enjoying the ocean environs. Then the tub sprung a leak. I went out to discover that the tub had deflated and dumped about 100 gallons of salt water into the yard. Over the next couple days two nearby bushes looked completely dead and two big crepe myrtle trees were very sick, shedding brown leaves all over the place. Intex, bless their hearts, immediately agreed to replace the tub gratis, although it took like 4 weeks to get it. In the meantime the trees recovered. The bushes are toast.<br />
<br />
Oh, and one bright spot during my Turbo Flare: My tastebuds have been messed up during TSW, but for some reason during the height of the flare certain foods tasted especially yummy. Apple juice was like nectar from the gods and root beer floats were like a party in my mouth. I was really thirsty so I downed gallons of apple juice and went through cases of A&W Root Beer and many tubs of Turkey Hill Natural Vanilla Ice Cream. I still managed to lose 20 pounds (or about 1.5 stones for 9 kilograms for you "furners") without trying. I've noticed some weight increase just in the last few days which makes me sad and happy at the same time, as it means I will likely return to my former "stocky" build but also means my Turbo Flare has well, lost it's turbo. <br />
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Hugs from Texas! <br />
<br />
<img alt="" id="id_7359_4ca9_6dbb_ea7d" src="https://lh3.googleusercontent.com/-fcZGxT16aDI/Vh8WFgxyNgI/AAAAAAAAAbM/3EvwpWkZ2sA/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" /><img alt="" id="id_a4b8_d827_ce88_35f8" src="https://lh3.googleusercontent.com/-S_r_viiwIWg/Vh8WlkXXzMI/AAAAAAAAAbU/90zENHmvlDM/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" /><img alt="" id="id_24bc_23c7_b1e5_32a3" src="https://lh3.googleusercontent.com/-2itHf_tZO-4/Vh8WmWr--UI/AAAAAAAAAbY/7XMxcc0RmVM/%25255BUNSET%25255D.png" style="height: auto; width: 392px;" title="" />Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com0tag:blogger.com,1999:blog-3110414520315056509.post-48605605199336915582015-09-02T19:11:00.001-07:002015-09-02T19:11:39.540-07:00Wednesday, September 2, 2015 - An Update<div><font face="Arial">My last post created a bit of concern, so I thought I'd post a 10 day later picture update. Still not looking (or feeling) too good, but there is substantial improvement. That red patch on my foot wasn't there a few hours ago... It is the result of rubbing my feet together while wearing socks. Ya think I'd learn. </font></div><div><font face="Arial"><br></font></div><div><font face="Arial"><img id="id_2e48_f70f_d91d_159b" src="https://lh3.googleusercontent.com/-iVUZKTlNK1U/VeesTU6IcKI/AAAAAAAAAag/yJx0h-0M6yk/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"><br></font></div><div><font face="Arial"><br></font></div><div><font face="Arial"><img id="id_3ee2_20b7_3f43_4f8" src="https://lh3.googleusercontent.com/-LJK8yfmagYY/VeesU15KC4I/AAAAAAAAAak/vdlhngU1OYg/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"><br></font></div><div><font face="Arial"><br></font></div><div><font face="Arial"><img id="id_350b_b6ca_2363_d677" src="https://lh3.googleusercontent.com/-jCwT-lHvhrk/VeesV6deVmI/AAAAAAAAAaw/NV_Rg2xqMbI/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"></font><br></div>Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com7tag:blogger.com,1999:blog-3110414520315056509.post-8435631163181761292015-08-25T15:20:00.001-07:002015-08-25T16:00:47.868-07:00Sunday, August 23, 2015 - Flare<div><font face="Arial">Well, it's been a rough few weeks. I'm not sure if I am feeling a little better, or I am getting used to the state I am in. I am managing to work so I will hopefully not need to take any medical leave. </font></div><div><font face="Arial"><br></font></div><div><font face="Arial">I am freezing, so the blazing hot weather has been helpful. I walk out of work, the heat hits me and I feel better. When I get home it's into the tub. I'm in a sleep/eat/tub mode and I am wishing time away. </font></div><div><br></div><img id="id_25e5_91a7_7112_f8e0" src="https://lh3.googleusercontent.com/-yAIKYlr_p0o/VdzqNUQ5L6I/AAAAAAAAAZo/xmxC5bHzX6M/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;"><img id="id_ff10_c207_3562_e765" src="https://lh3.googleusercontent.com/--vpnwALd_Oc/Vdzy6gwPB0I/AAAAAAAAAaA/QxellYgvF-Y/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;">I'm <img id="id_f743_d3f5_e7e6_c083" src="https://lh3.googleusercontent.com/-qkBvHhY0gDQ/VdzznBWKdXI/AAAAAAAAAaI/UFx3XVkmSeo/%25255BUNSET%25255D.png" alt="" title="" style="width: 392px; height: auto;">Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com4tag:blogger.com,1999:blog-3110414520315056509.post-59162753313318540022015-08-10T16:45:00.000-07:002015-08-25T15:29:43.416-07:00Sunday, August 9, 2015 – 762 Steps Forward, 686 Steps Back<font face="Arial"><br>
</font><div style="margin: 0in 0in 0pt;">
<font face="Arial"><br></font></div>
<div style="margin: 0in 0in 0pt;">
<font face="Arial">On September 23, 2013, 10 weeks into TSW, I returned to work
after a 5 week medical leave.<span style="mso-spacerun: yes;"> </span>Today, 2 fucking
years into this and I am looking into taking medical leave again.<span style="mso-spacerun: yes;"> </span>Every single symptom has returned, some
better, some worse than ever before.</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
Class, let’s
review the classic TSW symptoms:</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Rashes spreading and
developing in new areas of the body.</b><span style="mso-spacerun: yes;">
</span>My rashes have rashes.<span style="mso-spacerun: yes;"> </span>And they
are everywhere.<span style="mso-spacerun: yes;"> </span></font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Intense itching,
burning, stinging. </b><span style="mso-spacerun: yes;"> The itching remains the worst part and is out of control</span><span style="mso-spacerun: yes;"> </span>And the stinging, which has
never been an issue, has now joined in.<span style="mso-spacerun: yes;">
</span>If I hop in the shower for relief (hot water helps calm the itch) I do
not know if it will be soothing warmth or a million pins. I think the scratching causes a certain type of rash that is susceptible to the stinging. </font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Visible and
measurable flaking of skin – appears to be ‘snowing’</b>.<span style="mso-spacerun: yes;"> </span>I’m Pig Pen personified.<span style="mso-spacerun: yes;"> </span>I can’t tell the difference between the comma
and period keys unless I blow off my keyboard.</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Oozing exudate.<span style="mso-spacerun: yes;"> </span></b>Maybe worse than ever.<span style="mso-spacerun: yes;"> </span>It’s disgusting and stinks.</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Skin cycling between
oozing, swelling, burning, and flaking</b>.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span>These are not serial, but rather,
parallel processes, which means that I can be enjoying all four at the same
time!</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Red sleeves:
(arms/legs become red and inflamed, sparing palms/soles).<span style="mso-spacerun: yes;"> </span></b>The hallmark “red sleeve, white palm” is
back</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Thermoregulation
altered (feeling too cold or too hot).<span style="mso-spacerun: yes;"> </span></b>It's so weird to feel hot and cold at the same time. My body is radiating heat again, even when I feel cold. My
wife informs me that this is what menopause is like.<span style="mso-spacerun: yes;"> </span>I’ll never know for sure, but ladies, you
have my sympathy. </font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Nerve pain, sometimes
described as “sparklers” or “zingers”.<span style="mso-spacerun: yes;"> </span></b>Damn
it, I really thought these were gone.<span style="mso-spacerun: yes;"> </span></font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Enlarged lymph nodes.<span style="mso-spacerun: yes;"> </span></b>Woohoo!<span style="mso-spacerun: yes;">
</span>I have no swollen lymph nodes!</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Edema.<span style="mso-spacerun: yes;"> </span></b>A couple weeks ago, I gained 15 pounds in
a couple days with the legs and feet swelling up.<span style="mso-spacerun: yes;"> </span>This has thankfully eased and I am back down
to my svelt “just over a couple hundred” working weight.</font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Eye dryness and
irritation.<span style="mso-spacerun: yes;"> </span></b>This came back worse
than ever but has eased as well.<span style="mso-spacerun: yes;"> </span></font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Skin atrophy (
“elephant skin“).<span style="mso-spacerun: yes;"> </span></b>You haven’t lived
until you’ve had elephant skin on your penis. I will cherish this memory forever.</font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Hair loss: (head
and/or body). <span style="mso-spacerun: yes;"> </span></b>Yup. My hair has
really thinned out again.<span style="mso-spacerun: yes;"> </span>I haven’t had
a haircut in months and I’m afraid to get one as I might not be able to do the
Trump combover.</font></div>
<div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b style="mso-bidi-font-weight: normal;">Insomnia and altered
body clock</b>.<span style="mso-spacerun: yes;"> </span>I really don’t want to
go back on Ambien and hopefully the insomnia will turnaround soon.<span style="mso-spacerun: yes;"> </span>We dumped cable TV in our house, but I have
discovered “Buzzr” TV on over the air TV. <span style="mso-spacerun: yes;"> </span>They play classic game shows such as “What’s
My Line”, “To Tell the Truth”, and “I’ve Got a Secret”.<span style="mso-spacerun: yes;"> </span>Superb dozable television.</font></div><div style="margin: 0in 0in 0pt;"><font face="Arial"><br>
<b>Emotional
fluctuations, depression, fatigue, anxiety.<span style="mso-spacerun: yes;">
</span></b> I am beyond sick of this
crap, but I am not depressed in the clinical sense. It’s hard to think about going through this
for what may be years longer, but I remain hopeful that this will be but a
memory before I know it. And in the
global scale of suffering, what I have is a mere mosquito bite. Unlike Robin’s MD there is a positive end in
sight. Speaking of Robin, she has been
unwavering in her support and love and I appreciate her more every day!</font></div>
Dave Bhttp://www.blogger.com/profile/03938134400893131673noreply@blogger.com11