How Long Can This Last???

We moved from California to New Jersey in August, just a few weeks before the start of fourth grade. We had travelled across country in a Econoline Van, the same one that just nine short months ago, had driven us from North Carolina to California. I remember my parents debating whether or not my mom and I should fly to NJ instead - because of my condition. But we all drove... sightseeing along the way.


My most memorable moment from that trip is when my dad, who was driving at the time, was drumming on the steering wheel and console to the song "We're Coming to America" by Neil Diamond. It was one of our favorite songs. My dad was getting a little carried away with his "drum solo" when he banged on the cooler that was sitting on the floor between his seat and my moms. He banged hard on that cooler ... not realizing my mom had just put her needlepoint down. It was a strange scene - while still driving, he reached his hand over to my mother in the passenger seat, needle sticking out of of his palm and said very calmly, "Maryke, take it out". She took it out, and he kept driving. The rest of the ride was quiet.


We arrived in New Jersey - all of us unhappy to be moving, AGAIN. But over the next few weeks and months, something really wonderful happened. My psoriasis began to improve. It made no sense really - the sun and salt water were supposed to be really good in healing my sores and we just left California, where both were available daily!


Within, I would say five years of my outbreak, I had just a few spots left on my body and some on my scalp. And by the time I was in middle school, Psoriasis was just a nuisance for me. Worsening in the winter months, still barely noticeable. An occasional spot would flare up, but I could cover it.


It no longer consumed my thoughts. I was no longer riddled with intense itching and pain. I was no longer a sight for others to stare at. It wasn't hard to live with... just a few spots. And that's how it remained for the next 18 years. Until this November.


More tomorrow...

Unconditional Love...

Brothers can be mean. Especially older brothers. And I have two. Poor girl.


Ethan and I are just three years apart. He would taunt me, tease me, pull the heads off of my Barbies (which didn't go back on, by the way). But when I became sick I saw a side of him I hadn't seen before. A compassion. An unconditional love. He was there for me.


Ethan was in the sixth grade and he and I went to the same school. We walked together to and from school. Ethan was my gatekeeper. The older kids at our school could be especially hurtful, not just to me, but saying nasty things to him. I remember him sticking up for me on one particular occasion when the boy who was taunting me was calling me "polka dot girl". Now, thinking back to it - I wish I could have said, "is that the only nickname you can come up with??? Polka Dot Girl??? Is that the best you've got, really". But at the time, it didn't matter how stupid the insult was, it still hurt.

Ethan didn't blink. He just went after the guy. It was like a knee-jerk reaction. I never heard from that boy again. Ethan was my protector, from that day on. And I felt so safe walking home with him.

And although he still pulled the heads off my Barbie's, I knew he loved me. I really knew.

Back to School...

I don't remember the first day back to school.

I just have a few memories of being in the third grade. One is kind of gross so if you are at all faint of stomach (On Fire for Jesus), you should skip this short, but yucky paragraph. The itch of psoriasis is really intense, and when you are covered in it, you can't even imagine. So, during the day I would pick at them, mostly my arms/legs and then I would put them into a pile on the floor. Isn't that disgusting??? Can you imagine sitting next to me? Yuck. I can't believe I even did that. The poor girl next to me, the poor janitor who had to vaccuum the room every night. How gross.


In California, the cafeteria is outside. It's under cover (for the one time a year that it would rain). Then from lunch we always played outside. The typical games and playground stuff - chase, dodge ball, swings. And before I had psoriasis I had plenty of options on the playground. Plenty of girls that I played with. When I returned to school looking horribly different I stood with the teachers during recess. I had no one to play with. Funny enough, I don't remember being sad about it. The teachers were wonderful. They played with me. They turned a jumprope for me. I was never upset that I didn't have friends on the playground. The teachers were so loving and protective.


At the end of the school year, there are always lots of fun events. We had a luau at the local park. I have pictures of it. It's May, which in California is quite warm... I'm wearing pants and a long sleeved shirt. With a grass skirt, made from different colored streamers the picture has me sitting with a group of three other girls. I don't really remember these girls, except they weren't mean. I was sitting with them, but I have a feeling I wasn't really invited. They were gracious. Third grade is not when most kids learn grace and compassion. But they never told me to move. I really appreciated that.


Then there was the end of the year, third grade pool party at one of the teachers' homes. My mom recalls this day - for some reason I've blocked most of it (except for the teacher telling us that we MUST use the bathroom and not pee in the pool. She said that her husband put in special chemicals that react with pee and turn the water a different color so that people would know that you had peed. Weird I know). Anyway - my mom recalls that I wore stretch pants and a tight tee shirt UNDER my bathing suit. Talk about embarassing. Like I said, I think we all know why I blocked it.


More tomorrow...

The Daily Routine...

My Dad was back on the East Coast working out of Philly, my brothers were in school all day - so it was just me and my mom. She stayed at home with me for several months during the beginnings of my psoriasis. I wasn't permitted to be in school. She spent the day taking care of my skin. I believe it was her full-time job.

Just before bed, she would cover my body in different steroid creams/ointments and then wrap my arms and legs in saran wrap. She remembers that her father (my grandfather) had psoriasis on his elbows quite severly and would wrap them in saranwrap before bed. We found that not only was the "occlusion" good for loosening the scales but it kept me from scratching them. Before I was wrapped, I would wake up in the morning, with dried blood all over my sheets because I had unawarely been scratching my skin until it bled - all while I slept.

In the morning, after she un-saranwrapped me, I laid on a towel on the living room floor. She had to "loosen" all the scales. It would take what seemed like to me, a then 8 year old, hours to do. Now, as a mother, I can't imagine having to pick scales off my daughters entire body and scalp, knowing that it caused such pain. But also, just stomaching it day after day. She was so gentle, so patient. Never rushing to be done. What a blessing she is. What things she endured.

After that, I had to have light treatment. We were able to buy a UVB sunlamp for home instead of driving to a UVB lightbox at the clinic. She would have it pointed at different areas of my body for just a few minutes at a time, and then move it to the next spot. And the next. And the next. I never minded the light therapy. It was one thing that didn't hurt. I loved the warmth of the light, and remember how cold it felt whenever it would shut off.

After light therapy, more ointment. Then in the afternoon, I would have to bathe in a tar solution. It was thick and brownish-black. It was disgusting. But an important step in my treatment. My mom would sit outside the tub and read me stories while I soaked.

Then in the evenings, the ointment and saranwrap again. It was an all day affair. And never once did I see her wince at the sight of me, never once did I hear her complain... never once.

More tomorrow...

The Beach...

So great! The doctor told me I had to go to the beach everyday, how bad could this be? We lived 15 minutes from the beach in San Diego. So, the very next day - my mom packed us up and took me to the beach. I couldn't wait. I kept thinking - no yucky medicine to swallow, no shots to take - what could be better.

My mom packed lunch, laid out a blanket and I went running for the water - so filled with excitement that we HAD to do this everyday to get better. And then it happened. The salt water hit my skin, my red sore flared up skin. As a seven year old, you've never had this happen before (you know, like the day you shaved your legs and hour before you hit the beach). The pain that soared through my body was horrific. I turned right around running to my mom screaming in agony. She wrapped me up in a beach towel and rocked me. We didn't even stay to have lunch on the beach. I was so sore, so upset. So disappointed. We did this everyday for weeks, until I think my mom couldn't take it anymore. I was so grateful. To this day, I'm not a huge fan of the ocean water.

More tomorrow.

Here's the Scoop...

In 1984, we moved from our awesome house and neighborhood in New Bern, North Carolina to Escondido, California as a result of my father's job. It was a hard move for all of us, but one that we had to do. We'd made a big move just a few years earlier from Long Island, NY to North Carolina and no one liked the idea of doing it again.

I came into the 3rd grade part way through the year as a new student. Not always easy. Then my dad was re-assigned almost immediately to Philadelphia. So, he spent the rest of the nine months we actually lived in California, in an apartment in Philly, while we stayed in California. It was a hard time for our family.

Over Christmas break, I became sick with strep throat. Three weeks later, I broke out into a "rash" all over my body - little red dots, everywhere. The the dots became bigger, and bigger - it was spreading. And in a few short weeks, I was 70% covered with the "rash". I wasn't allowed to go to school (for fear that whatever it was that I had could be contagious), so for weeks I stayed home and my brother would bring my schoolwork home for me. After antibiotics and blood tests from our family doctor with no answers, he sent me to the Dermatology Department at Scripps Clinic - a well known hospital in the area.

As I remember, the hospital was enormous. The lobby ceiling seemed to never end. I went to the reception desk and without either my mother/I saying a word, the lady said, "You must be Stephanie". I thought that was so cool that she knew who I was (my mother was so kind and never said of course, that my appearance was so unusual, someone probably warned her). I was met by a dermatologist - I couldn't tell you what he looked like, but I'll never forget what he said. "I have good news and bad news, what do you want first?" We picked the good news.
"The good news is that you get to go to the beach every day". Sweet, I thought - that IS good news. "The bad news is that you have Psoriasis".

I remember my mom and I feeling relieved that at least we knew what it was. We finally had some answers. And a doctor that seemed to know how to "fix" it. As we came to find out later - there is no cure for psoriasis... but a myriad of treatments to try and hope for the best.

More tomorrow...

Psoriasis...

Psoriasis, pronounced (sore-EYE-ah-sis) is a noncontagious lifelong skin disease. It appears as raised, red patches or lesions covered with a silvery white buildup of dead skin cells, called scale. No one knows exactly what causes psoriasis, but is believed to have a genetic component. Most researchers agree that the immune system is somehow mistakenly triggered, which speeds up the growth cycle of skin cells. A normal skin cell matures and falls off of the body's surface in 28 to 30 days. But a psoriatic skin cell takes only 3 to 4 days to mature and move to the surface. Instead of falling off/shedding the cells pile up and form lesions.

There is no cure for psoriasis. There are many different types of topical and systemic treatments to help clear psoriasis for periods of time. Seven and a half million Americans are said to have psoriasis. And I'm one of them.

More on this tomorrow...