What Not to Wear

Have you seen the show? Some poor woman, getting by day-to-day, is secretly recorded looking less than her best. Her well meaning family appeals for help from the ever stylish Stacey and Clinton. They set up a fashion intervention, ambushing her and offer a deal; bring all your clothes to New York where we will tell you everything that is wrong with all your choices, we’ll give you $5,000 to buy the right clothes, fix your hair, your makeup and transform you into a new, and better, woman. We, the audience, would watch in rapt attention hoping that we didn’t also own something “wrong”, but knowing we did and secretly wishing for some guidance in our own closets.

I had a version of that on Friday, in the continuing saga of Paula’s Nasty Skin. I had hoped we had come to the answer, a chemical found in many daily products, like shampoo, body wash, hand soap, toothpaste, laundry detergent … the list is endless. I had meticulously removed every offending bottle and tube that contained the stuff from my house, and was finally finding relief from the mind-numbing itch. Except that with distance from the light therapy and steroids, the rash came back – not the itch – just the rash. The root cause lies elsewhere.

The doctor had also raised formaldehyde resins as a possible cause and advised a layer of white cotton between my clothing and me. I had taken the advice to heart and cornered the market on granny panties, V-necked men’s tees and cotton camisoles. I was good, right? Wrong. As my brother once said, “If you’ve got a bucket full of water and someone pours in a cup of urine, do you have a bucket full of water and some urine? No, you’ve got a bucket full of urine.” The doctor was really clear; I had to remove the offending chemical from my wardrobe. Completely. No mercy. Dead to me. Gone. I should consider those items of clothing as forever, What Not to Wear.

I started on Saturday morning, looking at every item of clothing I own for signs of the poison. I opened a large black trash bag and started sorting. Any T-shirt with cotton/modal or cotton/polyester blend, out; 100% cotton can stay. The Gloria Vanderbilt jeans, interesting, the blue are cotton/polyester/spandex – gone; black are cotton/spandex – they stay. The cotton/polyester blend dress – gone. Anything with rayon, gone. Corduroy, wool blends, Tencel, color-fast, no-iron, wrinkle-resistant, get rid of it. Yoga pants; exercise pants; most of my pajamas; two of my favorite tunics; leggings; three evening dresses; all my dress pants; most of my blouses; three suits with mixed fabric lining; and so on. A leather coat with lining, my daily wear winter coat and my favorite post gym UWM hoodie, all had to go. By the time I was done and I had filled seven black trash bags. Seven.

If you are like me, your closet needs a good going over, but this was ridiculous. As I surveyed what was left I found a two common themes. The higher end dresses I own were safe to wear, stuff purchased at lower end stores was full of poison. I also found that my warm weather clothes were mostly spared. I was able to keep all my shorts and most of my tanks, swimsuits, sundresses and two of four beach covers. I view this as a sign. Shopping for new work clothes, outerwear, sweaters, even jeans and comfy pants just got a whole lot more complicated. I need easy. I need carefree.

I need a beach.

Doctor. Who?

We have friends who (pun intended) are really into Dr. Who. Yes, we saw the low-budget British show many years ago, and the long-scarfed hero is…interesting. But hey, there are people who don’t get Firefly. Or Fantasy Fest. But I digress. Since February my all-consuming deal has been The Itch. My skin has been on fire, and I was/am willing to go to almost any length to Just. Make. It. Stop. Which led me to my own high-tech Tardis. About the same shape and size, mine boasted enough fluorescent lighting to overpower six George Webbs. My travels started at under 50 seconds and went to just under two minutes. But instead of a long scarf and overcoat, I stood there naked, well, except for the nifty green goggles…

Three days a week I left work early to get to the cancer center at Froedert to meet my new BFF David, a stocky black guy who escorted me to my Tardis, gave me my goggles, and made sure I had them on before flipping the switch. Bug Zapper engaged, I stood with my arms over my head absorbing the light. Seconds or minutes later I was done, dressed and out of there—feeling fried. What’s interesting is that, even on our most whacky Key West days, the bottoms always stay on. Apparently they have protected me from the effects of UV rays over the years, because that is the one part of me that has never burned before (ouch).

What should have happened, instead of coming out with a crispy back end, was a transport to a new and strange place. Unfortunately, this is where science and science fiction diverge. As I recall, Dr. Who in his Tardis saved the universe countless times, neatly moving through time and space. I, on the other hand, always stepped out where I started and a bit disappointed that real life isn’t like any TV show.

Photo credit: Dan Johnson

At the last treatment David’s parting gift to me was a large bag of lotions, and sensitive skin friendly detergents. For my part I made him a Cream Cheese Pecan Pie for Thanksgiving, thinking he could warm it up in the Tardis.

Enough time has gone by where it doesn’t seem that odd that I only wear white cotton undergarments (my body armor) and only sleep between white cotton sheets. The phototherapy treatments have helped, and tomorrow I go to Madison for a battery of patch tests that should narrow down what’s going on. A week of no showers. Yeah, I’ll be pleasant by Thursday…

So, loyal 17 readers, that’s where things are today. If I had a real Tardis and could jump into the future to figure out what’s up with my “Itch” I’d love to do it. But this needs to be fixed the old fashioned way. And, just sayin', that scarf looks itchy.

The Itchy and Scratchy Show

No matter what, you’ve got to hang on to your sense of what’s really important. I’m trying. I’m really trying. Since February I’ve been dealing with a skin condition. Annoying at first, it has become the focal point of my life. I admit, it’s not life threatening and by no means do I mean to diminish the concerns of people with real health issues, but I’ve had enough.

It’s gone from a fairly localized rash to the point where it covers, literally, my entire body. It itches intensely, it looks awful, it keeps me up at night and I feel sub-human. I look like a walking audition for a zombie movie. I’d make an awesome leper in a remake of Jesus Christ Superstar. 

The first doctor I saw, when the situation was still fairly contained, gave me creams and sent me on my way. When I returned for follow-up, still blooming, I was sent off to an allergist. Multiple skin and intra-dermal tests later I was told to take over the counter antihistamines and return to doctor number one. Doctor number one took a few invasive biopsies and sent them off to test for gluten sensitivity. Both tests were negative; green light to eat gluten. In the interim I was due for a physical. My GP reviewed all the paper work and proclaimed that doctor number one probably got it wrong, I should start a gluten free diet.

So gluten free it is, and bless him, Dan joins me. He found gluten free croutons to enhance the Caesar salad and a loaf of bread to make BLTs, because it is tomato season. The bread was an adventure. As Dan put it, more like bread crumbs who decided to get together in a bag and pretend they were friends. It was a less than satisfying sandwich experience.

On Saturday, we met my sister and her husband for Tosafest. There was a petting zoo and camel rides. My snarky brother-in-law suggested I ride the camel – it might be the cure! What other opportunities would I have? I rode the camel. There has been no change in my condition.

In my insane desire to get to the bottom of this skin mystery I turned to the miracle that is Google. There’s the usual WebMD and Mayo clinic. I’ve perused forums looking for whatever the doctor’s have missed. I’ve seen a lot of horrific pictures of people in worse shape than me. I even got sucked into watching a 6:18 minute video of some young ladies cleaning out their aunt’s impacted pore (not the best idea Aunt Grace, they should have at least worn rubber gloves.)

Today I saw specialist number three who took a detailed history and then, without even taking a look at my skin, proclaimed that I needed to see someone who knows even more about red itchy skin.  I am now patiently waiting to find out how many months it will take to get that appointment, in Madison no less. Specialist number three also said I was OK to eat gluten (Dan cheered) and I should bathe “as infrequently as possible.” I have two problems with this. The first is how much more attractive not bathing will make me feel. But second, and more importantly, a shower is as good as two hours of sleep. Seriously, doesn’t a shower refresh you and bring you to life in the morning? And if I exercise and shower at night, well that’s just like taking a nap before bed and I’ll never fall asleep.

This stupid rash has become the focal point of our lives. It is a constant distraction at work. It has affected my concentration in some other very important areas (nothing like adding an extra dollop of frustration onto my itch pie.) While Dan is rubbing me in with this goo or that, I know how bad it looks. But this too will pass. We’re past the days when there was $17 in the checking account on Wednesday and payday is Friday. Dan’s not wrapping beer cans around the exhaust anymore. The boys are happy and living fun lives far away. And I’ve got an itch. And Dan is still picking out costumes for Key West, which is coming up fast. (I'm thinking some sort of gooey mummy costume might work.)

Before we left doctor three’s office today I explained that we had a tropical vacation on the horizon, and she agreed to give me a prescription for powerful steroids that would clear my skin for week or so. I look forward to the break from the itch, and the vacation.

So, nothing really funny in this one, but it is a slice of life. Having seen dear friends and family go through much worse, I will not complain (occasionally, irrationally break down yes, complain no). And when this gets fixed, I will not take my skin for granted again!

And while I wait for my next appointment with doctor number four I am actively taking referrals for any of the following (living testimonials of success required):

Witch doctor

Voodoo priestess

Faith healer

Medicine man

Exorcist

Sorcerer

Gypsy queen
Wizard