February 20 - Let There Be Light!

I found this Bad Boy on eBay and am now the proud owner. It's a nearly new National Biological Panosol II 6 footer that will pump out 600 watts of 311 nanometer narrow band ultraviolet light, enveloping my poor wretched body with the warm loving healing power of the gods!

I have full cooperation from my dermatologists at UTSW, which is a good thing since it is a controlled device that requires some secret code the doctors have to get from the NSA or something. I have to go in to the UTSW phototherapy department to get some training before I turn it on. It seems they don't want to fry myself to a crisp. I appreciate their concern.

I have high hopes, but realistic expectations. Many folks have claimed that UV-B NB therapy greatly helps, especially by reducing itching, but others claim it does not help. We shall see.

By the way, my hands are significantly better. I did a couple nights of Vaseline with surgical gloves and the cracks went away. I think most of my problems now are exacerbated by my inability to resist scratching.

February 12 - Weakness

Until now, I have never been very sympathetic to those with a physical addiction. Take smoking for example. I’ve always thought it should be simple to quit. Just don’t put the damn thing in your mouth! Easy, right? Or take over-eating. Just don’t shove that food in your pie-hole! Easy, right? Alchohol problem? Just don’t pour the damn drink! Easy, right? I mean, it’s a physical act that your brain decides to do, apparently with your consent. Geez, people, you should at least have control of your own damn hands!

Now I understand. As I write this, my hands itch something terrible. I know that if I succumb and scratch it may feel awesome at first, but I will pay dearly shortly thereafter. Solution is simple… do not command my right hand to move to the left hand and scratch. Easy, right? To me, not only is it not easy, it is impossible. I am doing it right now! I simply cannot help it. This lack of control drives me insane.

Now my hands hurt. The cracks have gotten worse and are oozing. My stomach and legs get hot and sweaty, apparently in eager anticipation that my hands may pay them a visit too. I have to blow the skin flakes off my keyboard to make out the difference between the keys.

I promise that when I am done with this that I will have a sympathetic understanding of addiction. I will no longer be smug in my feeling of superiority over those weaker than me.

I am the weak one now.

F**k this S**t

The Bad

-This flare is kicking my butt. It’s almost like I am back to square one. Temperature control issues, night sweats, the shakes, lumpy elephant skin, itching out of control, cracked, oozing skin especially on hands and feet. If I succumb to the itch and scratch even in one spot my entire body becomes wet. I am back to taking baths and back on Ambien. I am eating everything in sight, primarily as a distraction, yet have lost some of the weight I had gained back. The hydroxyzine doesn’t seem to be working as well as it was, so I have been trying other things such as naproxen. I am missing a lot of work.

My hopes on getting to Seattle soon does not look good, and that is the hardest thing of all.

The Good:

The Ambien works well. I am hoping getting some sleep will help turn this around. Hair has stopped falling out. I am enjoying watching the Olympics.

I am trying to keep a positive attitude, but damn, this really sucks. The encouraging posts on the ITSAN forum from veterans that have made it through TSW have really helped to keep my sanity.

Other stuff:

I am trying far less moisturizer this time around to see how it goes. The only thing I have been putting on is Eczemin Cream, and only when I have a bad itch. It seems to work as well as Allegra cream, but instead of antihistamines it contains the anesthetic pramoxine.

In researching UV-B narrow band light therapy, I think I want to give it a try. I found a really good deal on a nearly new 6 foot, 6 bulb unit for home use for around a grand, but I am having trouble getting ahold of my dermatologist. The machines have an interlock that requires a digital prescription key, so I need my dermatologist to prescribe it. She did want me to try it a few months back, but my insurance rejected it. Going in to an office for treatments would be a royal hassle, and a home unit would pay for itself after a few months, especially if I do not have insurance coverage.

January 31 - MRSA

I have heard TSW guru Dr. Rapaport discuss the possibility of infection with a compromised skin barrier. It is generally not a concern. That said, my dermatologist was concerned and took a swab sample from my foot when I was there last Tuesday. I got a phone call today and was told it came back positive for MRSA, Methicillin-resistant Staphylococcus aureus. Great. Now I am on Doxycycline Hyclate pills, Mupirocin ointment, and Hibiclens antiseptic cleanser.

January 30 - My Mom

A quick little diversion from my normal posts. This is my Mom. She lives in Seattle and I live in Texas. This picture was taken last Christmas, shortly after her 92nd birthday. Being in no condition to travel, I wasn’t there. I have not seen her since last April and shortly thereafter I began my journey into topical steroid withdrawal.

My Mom lives in a memory care facility and suffers from the final stages of dementia. She has recently had a couple TIA’s, known as “mini strokes” but has recovered . She knows who I am when I call, and although much of the conversation makes little sense, the message that she loves me comes through loud and clear. I believe she understands that the love goes both ways. I have tried to explain to her what is happening to me, but she does not understand other than realizing I am trying to get well enough to make a trip to see her.

I have an unusual relationship with my Mom in that when I went through a divorce in 1999 I moved in with her for a couple years. As humiliating as it can be to be a 40-something guy living with his mom, she was the silver lining in a dark cloud. We became best friends. In one of our last lucid conversations, she explained that was a very special time for her.

Although my divorce agreement had a provision that neither parent could move more than 50 miles away from each other for our children’s sake, 10 years ago my ex-wife sued me to get legal permission to move to Texas with my two daughters. She won, and that is why I live in Texas. Fortunately, I have an awesome and supportive wife and stepdaughter that supported the move, and we have made lemonade from lemons. The hardest part by far has been living so far away from my Mom and siblings.

I bring this all up because throughout my adult life, my Mom has occasionally told me something that at the time sounded like an insult, but only now, going through TSW, do I appreciate it for what it was.

She told me that I would be hard to pick out in a crowd… that I was so… normal.

Nothing would make me happier than to be a normal, average guy that blends in with the crowd. That would be fabulous, and when I get there again, which I will, I will embrace it as sweetly as I do my Mom.

January 28 – A trip to the Doc

I went to UT Southwestern Dermatology today to see my dermatology team for a couple reasons. First, I want to give light therapy a shot. The docs wanted me to do it a while ago but it was denied by my insurance company. In my research online, I stumbled on a really good deal on a used 6 bulb 6 foot narrowband home unit. My primary doc was encouraging about me getting one, but these aren’t machines you want to fool around with. They also have built in protection that requires a prescription code for it to work. She wants me to have a consultation with the UTSW phototherapy department first. I am hoping the good deal will still be there, as home UVB treatments would be far cheaper than going to a clinic, especially if I have no insurance coverage for it.

Secondly, I was there for a follow-up and to talk to her about my recent flare. I was pleased that there was no mention whatsoever of wanting me to go back on steroids. Also, she was excited about some kind of water therapy and is going to send me some info. She respects my position on TSW and seemed very interested when I mentioned the latest topical steroid study being conducted by the NEA.

I know this is a touchy subject, but I wanted to talk to her about moisturizer withdrawal as well. She was emphatic that there is no way I should not be using moisturizers for one reason: My skin barrier is compromised. She said it is essential I keep my skin moisturized and soft and with a barrier of Vaseline. She was pretty concerned about fissures in my feet and took a biopsy and is putting me on a round of antibiotics.

This was my third attempt at moisturizer withdrawal, and for me it’s a no go. Maybe later when my skin is in better shape. Every time I have tried it my condition has become dramatically worse, and I am convinced that this last attempt has put me into a flare spiral that is going to be tough to recover from.

January 17 - Okay, So That Was Stupid

So, I have become convinced that not using moisturizers is a way to speed up healing during TSW. The trouble is, there's a withdrawal period associated with it where your condition will get worse. I have tried it before and not made it vey far, but that was when I was spending a large portion of my time in the bathtub. So, I thought I'd give it a go again. A quick warm shower (as opposed to my normal long hot shower) and off to bed, with no Vaseline at all. The itching was terrible but no worse than normal. I was very crispy in the morning and went to work. As the day progressed I felt worse and worse. My skin all over was dry and flaky, but my hands became riddled with small painful cracks. When I started to get the cold sweats and shaky, I gave up, put on Vaseline and went home.

What's stupid about it is that I have been trying to heal enough to make a trip to Seattle to see my Mom. I should have waited. Hopefully, I will improve soon, but it feels like another flare has begun.