Easing the Heartbreak

Since age 17, I have dealt with Psoriasis.  The past fifteen years, exacerbated by two separate chronic autoimmune diseases, the psoriasis turned especially nasty.  When I went in for treatment at the beginning of the year, I had three of the five types of psoriasis, plus psoriatic arthritis - a form in which the disease invades the bone.

I was a real mess, and totally miserable.  But I got very, very lucky in landing a doctor who really cares - a HEALER.  She fought for me with the insurance company and I was granted entry to the impossibly magical world of Humira, a drug that costs, on AVERAGE about $3,000 a month.  And from my point of view, it's worth every penny.

What Humira does, basically, is inhibit my T-cells, the very thing that is responsible for the cellular malfunction of my body.  Essentially, my skin cells reproduce at a MAD rate, which is what causes the piling up and sloughing of skin that is psoriasis.  Of course that means I'm at considerably increased risk of infections, which makes shopping, traveling, anyplace with crowds a little riskier than it is for most of you.

But here's the reason I'm telling you all this - the effect of this drug goes way, WAY beyond the physical aspects.  And the physical aspects are considerably more horrific than just bad skin.  Psoriasis has been linked in more recent years to systemic inflammation and systemic metabolic disorders, including cardiovascular ones that affect the heart.  Studies indicate that the more severe the manifestation of psoriasis, the greater the risk one has of developing Cardiovascular Disease.  So believe when I tell you I am beyond grateful for Humira.  As I told the Dermatologist "It's fucking miraculous!"  She told me, through tears of joy, "You are the reason I decided to go specialise in Dermatology." My skin is totally clear for the first time in 45 years, and I can't stop running my hands over it just for the amazing sensations I haven't even been ABLE to feel in all that time.

However it's not the physical, but the psychological part of the healing that has taken place I want to share with you.

Over the years, I learned a lot about patience by fielding all the questions and comments about my skin.  "What did you DO to yourself!?" "How did you get burned?" "What's wrong with you?" "Does it itch/hurt/burn?"  or "Oh my friend had that, but she took ___ and it went away." "You know that's caused by not taking good enough care of yourself, right?" "I don't know why you don't get that fixed?" or my favourite "Ewww...stay away from me, I don't want to get that!"  *sigh*  For the record, psoriasis is NOT contagious, and there IS no cure, only treatment, most of which I have tried.  I learned to deal with uninformed (a much nicer word than ignorant) comments over the years, in the process educating folks along the way, but the hardest thing to deal with has always been the stares.  I understand, I really do.  Different draws our eye, and anything that looks like a wound is possibly dangerously different, and thus acts like a strong magnet to eyes.  This is a very basic, instinctual safeguard we have built in, we are programmed to immediately recognise different and react appropriately.  To avoid the glances and outright stares, I learned to hide my skin with clothing.  I could easily hide the patches on my torso and my legs with clothing I normally wore, but my arms could only be hidden by long sleeves. I spent the past 45 years wearing long sleeves, even in the heat of 30 Texas summers.  Yeah...not a lot of fun, but at least it avoided the stares and constant explanations.

Medieval medical practitioners located the
problem with psoriasis in the brain, of course.

Another time I'll talk about other psychological aspects; intimate knowledge I am just becoming aware of as I live each new day with smooth skin.  It's enough for you to know that I am sitting here, typing this while wearing a sleeveless t-shirt, something I haven't worn since about 1980.  I actually went to the grocery wearing a three-quarter sleeved blouse the other day!  Every day, I automatically reach for something from my closet that will cover me to the wrist, and I struggled not to look only at long-sleeved garments while out shopping with a friend recently.  That same friend later reminded me to change into something short sleeved when I complained of being hot, a solution that simply hadn't occurred to me.  I'm finding it profoundly difficult to get used to the idea that I can wear anything but long sleeves, but I'll get there.  Besides, it means I'll need some new clothes, and that's carrot enough for this girl!

If you or someone you know has psoriasis or would like more information about psoriasis, or if you'd like to help fund the ongoing efforts in finding better treatment, even possibly finding a *gasp* a cure, a good place to start is the National Psoriasis Foundation.