Sunday, November 9, 2014 - Watch-o-the-Day #3

Seiko quartz diver's watch circa 1990.  I know that because it has a calendar on the back with a small dot punched by the date so I know when to replace the battery ('92).   I wouldn't want to be caught at 200 meters down when the battery dies now would I?  Hahaha!  It has been all the way down to about 10 feet or so.  The really good Seiko diver's are mechanical automatics, but this quartz version is still fairly collectable and may be worth more than I paid for it.  It is in pretty nice shape for it's age.  I wish I was!  While digging through the watch drawer I found an old wedding ring that used to be too big, but fits now.  My hands (and feet) are still pretty puffy and none of the watches I have with a metal band will fit unless I put a link or two back in.  I hope most of my extremities shrink back down to normal soon.  ;-)

Hugs from Texas!

Saturday, November 8, 2014 - Watch-o-the-Day

I regret not taking more pictures to document my progress, so I thought it would be fun to photograph my left hand on a near daily basis, each time wearing one of my watches.  

This one is a very special watch, even though I have never worn it in public and it was only very recently acquired.  It is from Disneyland in 1994 when my ex-wife and I were there with our then 2 year old twin daughters.  On a gift store on Main Street there was an official Disney artist that would custom draw your favorite characters on a drawing board, then electronically shrink the drawing down and mount it in a watch.  Dumbo was (and still is) one of my favorite Disney films of all time and I still can't even think of (let alone watch) the scene where Dumbo's mother is locked up and can only touch Dumbo with her trunk without getting verklempt.  So, we had a Dumbo watch created:

I went through a divorce when the twins were 6, and I have not seen this watch until just recently when my ex-wife gave it to me.

Here's the scene I mentioned:

November 6, 2014 - Watch This!

I am addicted to watches.  I've got a drawer full of them.  Nothing too fancy mind you, just a big assortment including a Tissot chronograph, Bulova skeleton auto, vintage Seiko digitals from the 70's, mechanical Oriental Erotic (NSFW), Nintendo game watches, Abacus (Palm OS), a whole bunch of Walmart $8.88 specials, etc. etc.  No fancy-shmancy Rolexes (okay, a couple fakes) or the like.  My wife tells me I should sell them all and then I could get a fancy-shmancy one (Breitling Navitimer perhaps?) but right now I'm quantity over quality, and if I did sell them I could definitely use the money for something more reasonable, like, say, food and shelter.

The one I am wearing below is my present favorite, a Citizen Eco-Drive radio controlled chronograph that my wife got me a few years back.  Why am I posting this on my TSW blog?  Because I haven't been able to wear a watch for a year and a half and I am wearing one!   Yay!  I am essential over my last flare and am back on my slow uneven rocky road to recovery.  Hands are better as noted, but so is my general disposition.  Feet and ankles are still a problem, but hey, they do look better, and I am not taking any pain or antihistamine medication regularly.  As innefective it has been, I am knocking on wood like crazy right now.

Here's best wishes for speedy recovery to all you TSW Warriors out there and hugs from Texas!

 

October 12, 2014 - Month 16 - Minor Setback

Hands and feet today:

It's a bit discouraging that my hands and feet are so bad after so long.  I'm going through a (hopefully) minor flare.  Itch has returned to my chest and stomach and there's some edema.  I'm still functional however, and my wife and I drove to Lubbock last weekend for the Texas Tech game.  We got caught in a scary hailstorm that made my car look kinda like my feet!

September 12, 2014 - Knock on Wood!

I am now in month 14 since stopping steroids and it’s been a while since I have posted an update. I am very hesitant to post this lest I jinx myself, but being someone that does not believe in the paranormal, I am going to post anyway…

I am better!

The infamous one-year flair was a doozy, but I am improved to a better state than I was before the flair. I am functional! Since my last post:

- We travelled to Oregon for my Mom’s memorial service. It was an awesome celebration of life.

- We celebrated my grandson’s first birthday. Cutest kid in the universe.

- We attended Texas Tech’s first football game of the season to watch my daughter march. I missed all last year. We won!

- We travelled to Washington for my niece’s wedding-in-the woods. It was epic!

- I hosted the Texas Hold’em tourney at my house with co-workers for the first time in a year. I won the first game with 7-2 offsuit!

- I am completely off Ambien. I started getting scary vertigo and decided I’d rather not sleep, but I have been sleeping pretty well without it.

- I am using much less hydroxyzine. That’s the only drug (other than thyroid pills) that I still use.

I still have a ways to go. My skin is better, but still a mess. The itching is still crazy, but before it was turbo crazy. I’d post pictures but I look pretty much like previous pics except the eye poofy thing is gone. I am stunningly handsome again.

My heart and best wishes goes out to all TSW warriors. Hugs from Texas!

June 29, 2014 - The Dreaded One Year Flare

I am two weeks from my first year anniversary. Signs that I was entering a new flare started showing up a few days ago. Up until then my symptoms have been reduced to my appendages, but I started getting a rash back on my abdomen along with itching and wetness. My eyes started swelling and my neck has broken out. I itch everywhere. Every. Where.

When I woke up today (at 3:00 in the afternoon), I could not open my left eye. It was welded shut.

At least now, how I look and how I feel coincide.

June 17, 2014 - Let There Be More Light!

I am back to where I was before the last flare and I am making slow progress. I went to see my dermatologist team at UT Southwestern, and they were pleased. Yay!

Temperature control issues, cold sweats, electrical jolts, and itching on my chest and stomach have all but gone away. My extremeties continue to be a problem, with sometimes painful cracking on the bottom of my feet and hands.

My lack of ability to resist scratching continues to defeat me. Sigh. I think most of my skin issues would go away if I could just stop the damned scratching. The itching, especially on calves and feet continues to defy description. Oh, and there's still skin flakes flying everywhere.

I just don’t know if the phototherapy is helping or not, but the doc wants me to continue. I started out at 20 seconds per side and now up to 4 minutes. I will keep ramping up until I burst into flames I guess. It does feel good to do it, and there’s a nice scent like frying bacon afterwards.

Mentally, I am defintely better. Example: For years I have played in a semi-weekly poker tournament with a bunch of great guys from work, and I was able to play again last week for the first time this year. I did not play very well, but I didn’t before TSW anyway. I’ve actually saved a pretty good chunk of money by not playing all this time. Haha.

I handed my dermatologist a stack of printouts of topical steroid withdrawal reference material (from the ITSAN reference material page), and she said she would read them. I believe she will. She is genuinely interested in what I am going through. I do not think that she and the department chair expected me to heal without the use of steroids. I told her she has an opportunity to become a TSW advocate and she basically said “I’ll let you know”. I did not push it. I’ve got a follow-up appointment first week of September and it will be an interesting discussion.

In the meantime, my battle with Baby Pibu has become frustrating. They continue to sell the steroids-for-babies “Rash Relief” cream in a couple gift sets, and they are in ignore mode. They shut off comments on the Baby Pibu Facebook page, as did MetroDerm, the office where Dr. Kim (the founder of Baby Pibu) works, after I made a post there. I have been acting on my own behalf, but have been encouraged by the ITSAN board to lead an advocacy group there. I’d like to, but I’m not sure how good I would be at it. We’ll see how it goes with Baby Pibu.

If you are from Baby Pibu and are reading this, for the love of God please stop pushing drugs on babies. Please. I do not think I have ever been this upset about anything, and I swear I will not give up until Baby Pibu is steroid-free. If you somehow manage to silence me, there are over a thousand ITSAN TSW Warriors and parents of children suffering through TSW that will happily take my place.