Wednesday, December 16, 2015

Tuesday, December 15, 2015 - Watch-o-the-Whatever and Good News

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.

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.

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.

Hugs and Happy Holidays from Texas!


  1. Congrats on your normal day (that's HUGE!!!) and your positive attitude! At just over four years, I find myself getting angry at the setbacks (how can this still be going on???) yet it's also getting easier for me to breathe in, remember that I have so many other amazing blessings in my life, and realize what is truly important. Perhaps TSW is just a really crappy way of whacking us upside the head and making us be thankful. :)

  2. Thank you Mandy! I agree with you about the whacking upside the head thing. We are not the same person we were before this started. We are better!

  3. This showed up on my "One Year Ago" Facebook timeline, so I thought I'd update. Sure enough, I went through a third year flare. It was pretty bad, but not nearly as bad as my two year flare. And today, one day again after Robin's birthday, I am better than I have ever been. Robin is doing well too as her FSHD MD is progressing extremely slow.