Monday, June 11, 2018

Sunday, June 10, 2018 - Yep, Another Flare

I'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.

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.

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.

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.

Saturday, March 31, 2018

Saturday, March 31, 2018 - Still Feeling Good!

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.

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.

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 on Facebook or   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!

Hugs from Texas!

Wednesday, November 8, 2017

Wednesday, 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.

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.

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.

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.

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.

Hugs from Texas!

Sunday, September 3, 2017

Sunday, September 3, 2017 - Slow Improvement

A 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.

Tuesday, July 4, 2017

Saturday, June 24, 2017 - Anniversary Flare #4

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.

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.

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!

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.

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!

Thursday, May 25, 2017

Thursday, May 25, 2017 - A Graph

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.

I wanted to use this graph to make a few points:

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.

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.

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. 

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.

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.

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.

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.

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.

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.

Hugs from Texas!