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!

Monday, November 21, 2016

Friday, November 21, 2016 - Knocking on Wood

A 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.


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!


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!


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!





Sunday, July 3, 2016

Sunday, July 3, 2016 - 3 Year Anniversary Flare

Well, 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.

  



 

Tuesday, June 14, 2016

Sunday, June 12, 2016 - Goji Madness!


Here's a nice little distraction...


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.


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!


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!


By the way, the folks at Blue Goji have been incredibly nice!  http://www.bluegoji.com/gojimadness