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 na├»ve 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!



Friday, November 6, 2015

Friday, November 6, 2015 - Watch-o-the-Week - A Huge, Beastly, Bulging Watch

Yay!  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!

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.  




Wednesday, October 14, 2015

Wednesday, October 14, 2015 - An Update Update

I'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.

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.

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.

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.

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.

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.

Hugs from Texas!

Wednesday, September 2, 2015

Wednesday, September 2, 2015 - An Update

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. 






Tuesday, August 25, 2015

Sunday, August 23, 2015 - Flare

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.  

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. 

I'm 

Monday, August 10, 2015

Sunday, August 9, 2015 – 762 Steps Forward, 686 Steps Back



On September 23, 2013, 10 weeks into TSW, I returned to work after a 5 week medical leave.  Today, 2 fucking years into this and I am looking into taking medical leave again.  Every single symptom has returned, some better, some worse than ever before.

Class, let’s review the classic TSW symptoms:

Rashes spreading and developing in new areas of the body.  My rashes have rashes.  And they are everywhere. 

Intense itching, burning, stinging.  The itching remains the worst part and is out of control  And the stinging, which has never been an issue, has now joined in.  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.  

Visible and measurable flaking of skin – appears to be ‘snowing’.  I’m Pig Pen personified.  I can’t tell the difference between the comma and period keys unless I blow off my keyboard.

Oozing exudate.  Maybe worse than ever.  It’s disgusting and stinks.

Skin cycling between oozing, swelling, burning, and flaking.   These are not serial, but rather, parallel processes, which means that I can be enjoying all four at the same time!

Red sleeves: (arms/legs become red and inflamed, sparing palms/soles).  The hallmark “red sleeve, white palm” is back

Thermoregulation altered (feeling too cold or too hot).   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.  I’ll never know for sure, but ladies, you have my sympathy. 

Nerve pain, sometimes described as “sparklers” or “zingers”.   Damn it, I really thought these were gone. 

Enlarged lymph nodes.  Woohoo!  I have no swollen lymph nodes!

Edema.  A couple weeks ago, I gained 15 pounds in a couple days with the legs and feet swelling up.  This has thankfully eased and I am back down to my svelt “just over a couple hundred” working weight.

Eye dryness and irritation.  This came back worse than ever but has eased as well. 

Skin atrophy ( “elephant skin“).  You haven’t lived until you’ve had elephant skin on your penis.  I will cherish this memory forever.

Hair loss: (head and/or body).   Yup. My hair has really thinned out again.  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.

Insomnia and altered body clock.  I really don’t want to go back on Ambien and hopefully the insomnia will turnaround soon.  We dumped cable TV in our house, but I have discovered “Buzzr” TV on over the air TV.  They play classic game shows such as “What’s My Line”, “To Tell the Truth”, and “I’ve Got a Secret”.   Superb dozable television.

Emotional fluctuations, depression, fatigue, anxiety.   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!

Saturday, July 11, 2015

Thursday, July 9, 2015 – 2 Year Anniversary

It’s been 2 years today that I last used topical steroids. I have been slowly progressing until about a week or so ago.   I have started a major flare.  Sigh.

Many of the symptoms that had disappeared are making, I dearly hope, a final appearance.  The insane itching that had moved out to only my extremities now envelopes pretty much my whole body.  The itching has evolved into something that is impossible to describe and nobody outside of the TSW sufferers world would understand.  The feeling of, dare I say it, pleasure, has reached the point where it feels so damn good to rub and scratch that it doesn’t matter if I am tearing up my skin.  It feels that good.  But then, as the itch subsides, which it always does for at least a while, the itch is replaced with pain.  The subsequent weeping of clear fluid has come back as well and the dry cracks have returned to the palms of my hands and soles of my feet.  The worst part is that this itching affects, well, my privates.  I can handle the hands and feet stuff, but dammit, that is really adding insult to injury.

I am also experiencing mild “creepy crawlies” again, where my skin feels like, well, just weird.  I was up until 5:00 this morning, and even my old trick of listening to music on headphones as a distraction is not working.  I have lost a few pounds and feel warm.  I have swollen infected eyes and mild elephant skin has returned to my legs.

Thankfully, I have not felt any cold sweats or electrical jolts that I used to, and the edema has not returned.  Knock on wood.

I was very reluctant to post this, as not only does it sound discouraging to those going through this, it looks like I m looking for sympathy.  I am not.  The cold truth is that TSW is a long process and I have been using topical steroids as long as anyone possible could.  Hydrocortisone, and the subsequent steroids of ever increasing strength, were introduced when I was a small child over 50 years ago.  It is was it is, I just have to trudge through it.

Hugs from Texas,
Dave







Tuesday, April 28, 2015

Tuesday, April 28, 2015 - Cruise

In my last post I mentioned going on a cruise with my wife, and we went last week! I originally scheduled it for September, but moved it up as I was feeling pretty good and we don't know how Robin's FSHD will progress.  The cruise was awesome!  We went on the Carnival Magic out of Galveston and visited Roatan, Belize City, and Cozumel.  The weather was perfect in every port, the ship beautiful, the food yummy, and the company could not be better.  We stuffed ourselves silly, drank too much, and held hands a lot.

I bought a "spa package" because the ship has a "thalassotherapy pool", which is basically a giant hut tub with sea salt, mineral, and vitamins in the water that is supposed to be healing.  I went in in every single day and although it felt great, I am not convinced it did much good.  The ocean, on the other hand, seemed to help more and my skin was significantly better after the cruise.  Before and after photos of my usual left hand is below.  We have been back a couple days as I write this, and my skin seems to be regressing back to its pre-cruise state.  This tells me that I am medically required to live by the ocean!  Next time I see my dermatologist I will see if she can write me  prescription for that.  :-)  Robin and I are both drawn to the ocean and are considering that in preparing for an eventual retirement.

The first year anniversary of my mom's passing was while we were in Belize, and I could not think of a more appropriate place to be.  One of my mom's lasting legacies was to treat her entire family (more than 30 people!) on a family reunion cruise, not once, but twice.  Once in 1993 on the Majesty of the Seas and once in 2000 on Zaandam.  The cruises were incredible and my Mom was glowing (even more than usual) in her loving generosity.  I feel her presence whenever I am near a lake or ocean, thanks to a lifetime of great experiences with her.  Perhaps her being Norwegian makes the ocean a genetic draw, and I never feel quite at home unless I am near, in, or on it.

I still have a ways to go with my TSW, but I feel alive again, perhaps more than ever.  To my TSW Warriors, this cruel endurance test will make you a better person, and certainly more appreciative of those little things that you once took for granted.  Like holding hands.


Wednesday, March 11, 2015

Wednesday, March 11, 2015 - An Update


In reading what others have gone through with topical steroid withdrawal, there seems to be a late stage where they kind of disappear.  I believe it’s a time when they feel good enough that the symptoms are no longer the central focus of their lives and they just want to get on with life.

I am at that point.

I have been taking pictures of my body on a regular basis, especially the left hand to show a progression and to be honest my hands look worse than the last ones I posted.   I still can’t wear a watch and just a couple weeks ago my hands were covered with giant cracks everywhere, but I *feel* better.   The weird anxious feelings, the electrical jolts, the insomnia, the temperature control problems, the cold sweats, the weight loss, the mental fuzziness, are essentially gone.  I feel good!  The insidious itching is still there, but much less than before.  My hands, feet, and, well, unmentionables, still are a problem, and I sense that it will take a very long time for the itching to go away, but I can sense slow steady improvement.

None of my rings (size 9) fit, so I bought a new cheap one wile my wife and I were visiting San Antonio (size 11) a few weeks ago that fits and it is a bit looser than it was.  I am starting to see the veins on the back of my hands again that were once very prominent.  I am no longer taking hydroxyzine and only occasionally take ibuprofen to help control the itch. 

Another life event that has helped put a perspective on my topical steroid withdrawal is my wife’s health.  She has noticed a very slowly worsening strength in her body, especially legs and hands.  After months of testing and prodding, and a terrible cancer scare, it has been narrowed down to muscular dystrophy, although we still don’t know which of the 40 or so types it is.  This is an incurable muscle disease that will get progressively worse.  She is  a trouper and takes whatever hand is dealt to her with grace and acceptance and is my greatest inspiration.  I have no right to complain about anything.

We are now in YOLO (you only live once) mode.  I just bought a sports car (not expensive or anything; a 2003 Toyota MR2 Spyder.  She already has a 2007 Vette) and we are going on a Caribbean cruise soon.  She is retired and committed her life to helping others.  She is part of “NICU Helping Hands Angel Gown Project” http://www.nicuhelpinghands.org/lend-a-helping-hand/angel-gowns/ and tirelessly converts donated wedding gowns into tiny little dresses and tuxedos that babies wear when they don’t make it home from the hospital.  Talk about putting our lives into perspective.

Speaking of babies, I’ve basically given up my efforts to convince Baby Pibu from manufacturing and marketing topical steroid products aimed at precious babies.  To be honest, this experience has shaken my faith in humanity to the core.  We live in a society driven purely by greed and profit.  Money, like religion, is a drug that alters our perspective of reality and will cause otherwise good people to do despicable things.