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.

January 5, 2014 - Slow Progress

Starting month 7! Yay!

The BAD:

The. God. Damned. Itching. Will it ever end?

What looks like good ol’ eczema has settled into my hands and bottoms of my feet.

I am taking probably too much hydroxyzine.

I’m still sleeping on the lounge chair.

I am gaining weight.

The GOOD:

It seems as though the insane itching is moving south, hopefully that’s its exit path. What used to be insane itching on my stomach and chest has moved down to my legs, especially the calves and ankles. The itching on my stomach and chest has become, well, sane.

No more baths. One shower a day. I am experimenting with water temperature and duration. It seems the hotter the water the better it feels and I’ll shower until the hot water runs out.

The hair loss seems to have stopped. I hope the hair returns, but not a big deal . Heck, if I wouldn’t look like a bowling ball, I’d shave my head.

I am drier. I still get all wet and hot and cold, but to a lesser extent and not as often, and if I succumb to the itching and scratch it does not bring about the flood of wetness that it used to. I am leaving flakes all over the place again, but I’ll take dry flaky skin over wet oozy skin any day.

Most of the skin tags have gone away. A few have persisted and matured into adults. I tried the “tie a hair around it” thing on one and along with zapping it with a cauterizer it went away. The cauterizer hurts like hell, so the skin tag has to be pretty annoying before I will use it again. I’ve got a couple that are getting pretty annoying, as well as being a starting point for itching. Not sure why I have a cauterizer lying around, but I’ve had it for decades.

I am gaining weight. Not good since I am overweight anyway, but good in that it shows my metabolism is normalizing. I have been eating everything in sight and until the last month or so I was losing weight.

My mental attitude is better. It may be the hydroxyzine since it is an antihistamine that is also used for depression, but in any case, as my mom used to say, “I have soap in my hole”. She used to also say “Miss on you pister. You’re not so mucking fuch. Go in your own jack yard and back off!” Yeah, take that dermatologists!

OBSERVATIONS:

I am still not convinced about this whole moisturizer withdrawal thing. In any case, I am moisturizing much less than I was.

I see a lot of talk about alternative medicine on the TSW blogs, and am struggling with whether or not to speak up. The trouble is most folks do not know the difference between homeopathic and naturopathic. I’ll leave it there for now except to say one of those is complete bullshit.