Friday, February 21, 2014

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.

Wednesday, February 12, 2014

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.

Tuesday, February 11, 2014

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.