Monday, January 28, 2008
It was a very small group. Just five of us. Apparently there are upwards to twelve members. They served Panera for lunch (that'll keep me coming back for sure) and I sat down. No one asked me about my psoriasis. We sat and the ladies at the table were talking about insulation in a basement. Really, insulation. I thought, "I'll be patient, I'm sure they'll strike up a psoriasis conversation soon." Nope. Just insulation. After about 15 minutes of pretending I was interested, I finally spoke up. I turned to the lady next to me and said, "so tell me your story, how long have you had psoriasis." And the conversation began.
It was interesting to hear each person's short story - when they first had an outbreak and where they are now with it. Two of the ladies have psoriatic arthritis as well a psoriasis. The youngest of us (probably young twenties) is in remission but continues to come because, as she says, "I know it will be back".
Then we met a wonderful dermatologist from Hershey Medical Center. He looked far too young and good looking to be a real doctor, but after hearing him speak about T-cells and biologic treatments I was convinced he was legit.
Here's a few things I came away learning from that afternoon:
1 - Insulation has a front and a back, with a moisture barrier on one side - so when putting it in your basement, the moisture barrier should be pointing north.
2 - I use the typical treatments that any dermatologist would suggest. I'm totally normal in the scheme of psoriasis. Not normal in the rest of my life of course, but just the psoriasis.
3 - The next course of treatment for me would be to go on a systemic medication if the UVB therapy isn't effective. Systemic medications are in pill form and work to bind and inhibit the the enzyme involved in the overproduction of skin cells.
4 - Three of the five ladies at the table use biologics - a weekly self-injectible treatment that binds up the T Cells that are wreaking havoc on our skin. This would be the last course of treatment when all others didn't work, or if you are presenting signs of psoriatic arthritis.
5 - The biologic treatments have been around for 10 years - so no one knows the long term implications.
6 - The dermatologist is not married, likes the theatre, and we're trying to hook him with the young girl at our table up.
So there you have it. My recap.
Saturday, January 26, 2008
Up tomorrow, I'll be recapping my first meeting with the area psoriasis support group. See you then!
Friday, January 25, 2008
While I was standing in line with my son in the classroom (waiting for several slackers to get it together and get their lunchboxes) his friends started up a conversation about my face. They were all very nice, but were inquisitive about what it was. So I, as quickly and as to the point as I could explained psoriasis. I realized as I was getting ready to say, "your skin cells die off every 28 days" I could already hear the "ewww gross" comments, so I replaced "dead" with "shed" and it seemed to thankfully go a tad bit over their head. Then I explained "my skin just does it super fast". Huckleberry proceeded to tell the kids - "don't worry, it's not contagious". I tell them that I have a great doctor (gross overstatement) that is helping me. That reminds a seven year old little girl to tell me that she too has a doctor at the emergency room because she has "ammonia" - as I correct her with little success, a little boy asks if I have medicine. I tell him yes, I go to the doctor three times a week, and he gives me medicine. And he replies, "oh, is it Proactive? I see that on TV." And with that I give a little chuckle and a "no sweetie, not exactly" and we are whisked away to lunch.
Kids say the darndest things.
As a side note - I think that all lunch ladies and lunch aides are grossly overpaid and age far quicker than most people. They are all saints in my book. One visit to the lunchroom a year is enough for me!
Thursday, January 24, 2008
God was clear with me, that if I was to start blogging about my struggles, that it was to get out all my pent up feeling and to educate - not for approval, not for sympathy. And so (this time) I actually listened to Him. And went into this with pure motives. It's been so good to "talk" it all out. I've been holding it in for so long.
But then you all come in - and just knock my socks off with love, support and encouragement. Each of you are treasures in my life!
Have a blessed day - I'm off to the Lightbox! Maybe I'll get a killer tan from all this UVB!
Wednesday, January 23, 2008
Three weeks ago I went to the dermatologist. Normally when I go for a routine six month check up for my psoriasis, I sit in the chair (not even on the examining table) and show him the spot on my arm and he checks my scalp. Very uneventful.
This time, since it's EVERYWHERE, I had to undress and wear a paper cloth. So, I'm sitting on the exam table, wrapper in a big piece of paper. My doctor comes in, looks at me and says, "so, how are you feeling". In my brain I say, "look at me, how do you THINK I'm feeling". But instead I chuckle and then proceed to say, "i've been better". Then he says, "we'll start you on the lightbox right away, I've seen improvement with this type of psoriasis in the past". The nurse will get you started. And he's gone.
I proceed to start sobbing in the exam room. I'm not sure why, really. Maybe because I can't believe it's gotten this bad again. Maybe it's because my doctor showed not a stitch of compassion, and that day I could have really used some. Maybe it's because going to the dermatologist was admitting it was really back and I was not in control. Who knows why, but I cried. I got dressed, composed myself and spoke with the nurse.
She walked me downstairs to the other offices, and explains that three times a week, I'll have to come to the lightbox. The lightbox is a large booth with UVB lightbulbs that run the length of the booth. The lightbulbs are on all four sides of the booth. I am exposed to strong amounts of UVB light for about two minutes. Here's the theory behind phototherapy: "exposing affected skin cells to UV light through short, frequent sessions of exposure causes the skin cells to die, eliminating or improving symptoms, providing relief from psoriasis. Although it isn't a cure, it can significantly help."
I stepped into the lightbox for my first treatment that day. And as the lights came on, I just began weeping. I felt like my condition was finally being addressed, and I was so grateful that I was getting help. Then I began reciting the 23rd Psalm to try and calm myself. And what I love about Scripture so much - is that it works. It can calm you in times of distress, give you hope in times of despair, give you wisdom in times of uncertainty. I love the 23rd Psalm. So every Monday, Wednesday and Friday during my "lightbox" treatment, I recite this Scripture. And it blesses me.
I will be tracking with pictures my progress as the phototherapy continues. After three weeks, I'm starting to see that there isn't as much scaling on my face. I'll keep you posted as time goes on. In the meantime, here's a peek at what the phototherapy lightbox. My kids think it's "so awesome".
Tuesday, January 22, 2008
What will people think? What will my children think? What will my husband think? I realize I care way to much about what others think. I don't like that people are making assumptions about my condition. And I know, as a mother, other mothers are thinking, "is it contagious, does her kid have it?" In fact, I don't even have to wonder if they are thinking it - some people are saying it, asking me point blank, with no consideration of my feelings "what is going on with your face?" "are you contagious" "is that some sort of rash?" I answer politely, wondering if their parents ever taught them an ounce of manners.
Revisiting this disease has brought up so much pain, hurt and rejection from when I was a child. As a kid, my family fought my battles for me - answering people's questions and concerns. I'm so grateful, because now as an adult with this disease, the questions are being asked directly to me. I notice the staring, the doubletakes, and I'm not sure how to handle it.
Then I realize my kids are watching me through this trial. What unspoken things am I saying to them, when I won't leave the house without makeup, when I'm covering my body with turtlenecks and hats. Am I saying that I'm not beautiful, that God has made a mistake? Am I ashamed? Will my girls think every flaw they have has to be covered? That you can't be beautiful and have a blemish? Will my son be embarassed by me at the pool - will I even be confident enough to go to the pool?
Monday, January 21, 2008
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.
Saturday, January 19, 2008
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.
Friday, January 18, 2008
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.
Thursday, January 17, 2008
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.
Wednesday, January 16, 2008
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.
Tuesday, January 15, 2008
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.
Monday, January 14, 2008
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...