I want you to read this. I know it’s going to be too long. But I need to tell this story. It’s about my journey with this disease called psoriasis.
I’m a planner. A goal setter. I teach goal setting but I could never bring myself to set a goal to heal my skin. Oh, I set little goals. To get a flare under control. To learn to love myself in spite of what my skin looked like. To get through a bout of depression. Doable goals.
Because I’d heard enough from doctors and specialists about how this disease was incurable. That I would have to learn to live with it. That it wasn’t terminal–lucky me.
And I fell for a lot of snake oil promises. Some natural “miracle” cure that would really work if I just shelled out enough money. Or believed in it hard enough. And some of them helped for a while–the placebo effect was so addictive. And so heartbreaking when it ended.
For decades I couldn’t even say the word psoriasis out loud. I would wince when I heard it on an ad on TV or when someone made a joke about it. It was my dirty little secret. If I didn’t talk about it, maybe it would go away.
And I kept believing that someday that miracle cure would arrive. But years went by–then decades. When my skin was doing well I was optimistic, playful, good company, a good friend.
But when it got bad I hid away–pushed my friends away–ended relationships–sunk into depression. I let psoriasis ruin so many good things in my life. My skin was the first thing I looked at when I woke up in the morning and the last thing I saw at night. It was relentless.
I learned a lot about potions and lotions and aromatherapy. How to make my own medications–the cost of psoriasis meds being so daunting. The UVB treatments, three times a week, hours and hours of my time wasted. Waiting for my turn.
And to get those treatments–first, see a GP who would send in a referral to the specialist who couldn’t see me for months so (I’m not proud of this) I would call my doctor and lie that I was feeling suicidal. That got me in right away. That got me treatment before my entire body was covered with plaques.
But hiding out at home had some positive side effects. I read a lot and decided to become a writer. And to paint. Solitary pursuits. Of course I had a “real” job–teaching at a college. I had learned how to create a way of dressing that covered the offending parts of my body.
And then 2014 came along and all hell broke loose with my skin. Within two months 90% of my body was affected. The UVB stopped working–it made things worse. Even the sun stopped helping. It was devastating. And the itching was crazy making.
Next step–Methotrexate (a chemo drug with side effects, especially to the liver). I left the specialist’s office beaten.
AND then I hit the Internet and found a site that had a discussion board. And in that discussion board was a woman called Flintchick who had posted some ‘before and after’ photos about high dosage vitamin D3 and a vitamin I’d never heard of called K2 mk7.
I’d already stopped dairy and gluten and sugar and alcohol and nightshades and God only know what else. I was surviving on water and toothpicks-or so it seemed.
I sat at my window waiting for UPS to deliver the supplements I’d bought on line. It was my last hope before starting the Methotrexate and five days a week, 4 hours a day at the Skin Care Center. What was I going to do with my little dog, Lucky? I’d never left her anywhere for more than a couple of hours.
The supplements got stuck at the border and I had to pay brokerage fees. I didn’t care. I practically ripped the UPS guys fingers off grabbing the package and running up the stairs and swallowing those first pills.
Within days I was standing in front of my mirror saying “I don’t believe this! I don’t believe this!” My spots (there were thousands of them) were disappearing. More each day.
In six weeks I did not have a spot left on my body. I would love to say that I was giddy with happiness but the truth is I was shell-shocked. I kept waiting for the placebo effect to end. It didn’t.
There’s another story to tell but that is for another time. The irony is that I now have a website for psoriasis and a Facebook page for psoriasis and I write to people who have psoriasis. And I can type the word psoriasis faster than a blink.
All those years that I avoided the word “psoriasis” and now that I hardly have any spots at all, it has become an important word in my daily life.
When I wake up now, the first thing I look at is my funny l little dog, Lucky.
And then I wonder who I’ll hear from–an e-mail, or FB post or website post–someone who is at the end of their rope because of psoriasis.
Life sure can be strange.
Dakota & Lucky
PS: Please share this letter with your friends and colleagues. You never know who may be suffering from this disease. There is a tendency to hide. I did.
PS2. I apologize for those of you who may have read this on Facebook but it got such a good response that I thought I’d put it here, too.
This is the drawing I did for my dermatologist just before I started the Protocol. I was too ashamed to have someone photograph me. I regret it now.