|Brussels Graffiti Artist: Liu Bolin|
Dearest readers…an unusual post for me. Hiding in plain sight.
Sigh. I have morphea scleroderma. My variant is symmetrical, matchy-matchy on both sides of my body. It flares – painfully – and leaves very disfiguring and uncomfortable scar tissue in its wake.
It started in 2010. Now, four years and six dermatology specialists later, I have come to a truce with it. But the journey has been difficult and challenging.
Scleroderma is very unattractive. Mine exhibits on my arms, legs, chest, shoulders, and face. The last was the hardest while it was active…but my arms have been and still are a similar trial.
I have been through tough times with this. When my face flared, I retreated. I took out my garbage cans and collected my mail in the darkest hours of the night to avoid being seen. My lowest point was eating ketchup on lettuce to avoid going to the market for food…
I’ve had migraine disorder and anxiety disorder. Agoraphobia. Panic attacks. I’ve cancelled trips to see my kids and grandson because of the pain and the ugliness of the lesions.
I have been ashamed.
So why bring it up? My blog has been so good for me, in many ways. I love my blogger friends and the companionship of blogging. You have strengthened me.
But I do realize that blogging has also been an outlet…
My scleroderma began with a recalcitrant ‘pimple’ on my face and a few bumps – one of them a bug bite! – on my left arm and right leg (cut myself shaving). Slow to heal.
And progressed everywhere except my torso. But I cannot bear a strap on my shoulder, elastic on my arms, a seam pressing on a scar. I am the master of (buying) seamless lingerie and perfecting the inside finishes on my sewing.
Here I am now, no makeup or coverings – I have photo-shopped a few bandages out of my pics in the past, but have generally left them alone. Now I’ve decided that who I am is who I will be, on my blog. And in public. No more choosing a long-sleeve dress or top over a sleeveless one. This kind of happiness is a decision only I can make for myself, and I’ve made it. Feels wonderful.
You’ve never seen the left side of my face, because I’ve never included it in a pic. I have scars covering most of my lower face and going under my jaw, in several places connected to the jawbone, and leaving a visible indentation in my face. These particular lesions developed over a 2 1/2 year period and have been ‘quiet’ for 10 months. Scleroderma lesions take 2 – 5 years to become quiescent. The scleroderma lesions on the right side of my face are much smaller – crossed fingers.
My earlobes have been pulled down by the scars, and I ‘lost’ my piercing holes for 3 years. They came back in March – I don’t know why. But I can wear earrings again.
One might say, it’s not the worst thing … but for me it has been difficult. Hard. I’ve spent time with so many doctors – including psychiatrists, psychologists, dermatologists, neurologists. I’ve been told everything from it’s my fault to it’s not my fault.
In writing this, I hope I give strength to someone else who feels undone or challenged.
For now, ciao. Coco