Wednesday, May 14, 2014

Hiding in plain sight...

Brussels Graffiti     Artist: Liu Bolin

Dearest 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


  1. I'm so sorry that you have to deal with scleroderma, but I am extremely impressed with your decision to stop covering up. That has to be so freeing! You are an inspiration to me!

  2. I find inspiration here everytime I visit- today especially so. Thank you, Lovely!

  3. I'm also very sorry that you have to deal with this skin disorder, and I completely understand how you feel about it. I've been dealing with an annoying eczema problem for the last 7 years that came out of no where attacking both my forearms, the backs of both my hands, the left side of my neck. It itches like crazy and has caused considerable discoloration even with the use of prescription preparations. I accidentally discovered (overhearing the conversation of two other people ) that is somewhat of a miracle facial cleansing cream that has me some relief so thank God for that. I've seen other people who have it worse than me so I am very thankful than my case is no worse.

    I applaud you for declaring your freedom of being released from the bondage of wearing certain types of clothing because of what you are dealing with. I also suffer from what doctors call essential edema (swelling) in my left foot, ankle and leg. Again, I've seen others who have cases much worse than mine. I swear I've caught people staring at my foot before. I love wearing dresses and skirts and do so during the winter months when I can camouflage my swelling. But during the summer I've been stuck in pants because I think the swelling is less noticeable.

    This summer I made a pledge to myself that I would enjoy wearing skirts and dresses regardless of the swelling. But I've chickened out thus far. I need some of your courage! Sorry to write such a long comment, but your post touched home to me.

  4. I have admired you since I came to your blog for the first time. Thank you for trusting your readers enough to share such a heartfelt post. You are a beautiful woman, both inside and out.

  5. Your courage and strength are amazing. You are quite simply beautiful! xoxo

  6. It's wonderful that now you won't have to spend all that energy in efforts to hide, worrying about what others might perceive. You get to be you and enjoy your creativity, artistry and talent, and we get the benefit of enjoying your freedom and talent from afar. We get the joy of admiring you and enjoying you despite lingering fears and disappointments. I so enjoy your blog - the clothes you create, the ideas you share, your writing skill. I missed you while you tended to your dear mother. I'm so glad you're back, and I look forward to continuing to admire your beauty and bravery, inside and out. Thanks so much for sharing your newfound freedom and courage with us! We are blessed, thank you.

  7. Hooray! So Brave and doesn't it feel good to have shed all that extra baggage! And thank you so much for the inspiration.

  8. Good for you for 'coming out'. Scleroderma in no way diminishes your obvious beauty.

  9. You are beautiful just the way you are. Your scars are much more obvious to you than to anyone else. Your post makes me remember that quote about being kind to people because everyone you see is fighting some battle. I want to be more kind.

  10. Thank you. You are beautiful! I have come to the conclusion that my body image is the only one that really counts. It's the one that puts a smile on my face. I see myself as a gorgeous happy tall leggy traffic stopping woman. I'm probably not through the eyes of 'others' - but who gets to say, other than me? You haven't come by those warrior marks easily, and you should cherish and honour the woman who lives within that amazing skin. Have a great day!

  11. You are beautiful. I know where you are coming from. I have had psoriasis(an autoimmune disorder that leaves red spots all over my body) for my entire life, and it takes some time, but you get used to it. I haven't let it keep me from wearing short skirts and tank tops. In fact I don't even see it anymore. When I start wearing shorts, I keep catching people looking at my legs, and I look down to see what it is they are looking at. I laugh at myself and smile at the people who are looking. Some look away, and others smile
    back. It isn't easy to change the idea of what you look like in your head, but it's interesting. Take care of yourself.

  12. Thank you for sharing this with us. All of us have something, no one is perfect. And I agree with Mary Collins, you truly are beautiful!

  13. My heart goes out to you for the pain and suffering you experience with this disorder. At the same time I say Hallelujah! and Bravo! for finding the inner strength to make peace with it and not allow it to control your life. Everything I've seen and read in your blog comes from a beautiful soul, as does this post, and I'm so grateful that you will continue to share your beautiful self with all of us. Blessings to you Coco.

  14. I'm so sorry that you have been going through this lonely trial for so long. I am hopeful that sharing this will deprive the scleroderma of some of its isolating power now. True beauty shines from this post! Thank you too for your kind words and prayers for me. You have mine for you as well, as we walk through this season together.

  15. what a treat this post is! i've loved your blog for quite a while, but you always looked kind of 'distant' in your pictures showing your wonderful (and very pertinently inspirational to this fellow arty-person-living-in-the-heat) clothes. How happy i am to see pretty you up close :)

    i've had recurrent asthma which requires mass doses of steroids for months on end, which causes moon face bloating, acne, and facial hair. I also got in a bad car accident at age 20 which left me with a 6" scar on my face - it's healed beautifully and not that noticeable now, but for a couple of months afterward it was bad. I completely understand the urge to hide, especially as the different look on your body signifies the pain and uncertainty you're dealing with health-wise (in my case with the asthma it was close to fatal more than once). And i hate to say it but there's a lot of ignorance out there, and a bit of mean, too.

    I'm glad you're choosing to come on out and play! Hiding just makes a person feel squirrely-er, but i so understand the attraction. And, speaking as a person with neuropathy, any secrets on your inside finishes you want to share would be very welcome! Have a great day and thank you for a sunshine-y blog! I hope you continue feeling wonderful. steph

    p.s. the scars on your upper back look like you had wings in the past and you might sprout a pair again! Wow!

  16. Coco - I admire your courage. It doesn't look bad to me at all and I wouldn't even think about it or really notice it on someone at the supermarket, for instance. But I know it's how you personally feel about it that matters.

    For years I had a lipoma lump on the side of my upper back about the size of half an orange. I was so self conscious about it - it was visible if I wore a t-shirt and I was always nervous that someone would pat me by the shoulder, or something. I finally paid about $2000 and had it removed. It was a big relief to me.

  17. Oh this must be so hard for you to bear. You are brave. I hope you find some relief soon.

  18. Just wanted to let you know you are BEAUTIFUL!

  19. How very brave of you and it must be very liberating

  20. You are so brave to share this. I applaud your courage in sharing this with all of us.

    I wish I lived closer so I could be of use when you need it. Alas, I live some distance away so running to the store for you isn't going to happen. 8-D

    Consider yourself hugged, very gently. ♥♥♥

  21. Coco, just coming to this post a little late. How brave to have shared these pictures and your story. I'm certain that your inner beauty is considerable, however your outer beauty shines as well.

  22. Coco if others judge you on your scars they do not DESERVE to be in your company or to be your friend. Consider every scar a battle scar making you warrior ready for God. Another piece of armour I always say. Some if us scar on the outside and some of us scar on the inside - no matter where you wear yours wear them with pride. Your journey is your journey and only you have the power to make it good or make it great, to make it happy or make it sad. Keep moving forward positively

  23. Coco, you really are a lovely looking lady and I so applaud your declaration of freedom. It must feel so good to just let it all go. I know scleroderma can be a most difficult disease to deal with as a family member has it. Like you, he has refused to retreat and fights the good fight. I know this is not easy. I am so glad you have this spot in the blogosphere where you can share your joy of sewing. I wish you the best.

  24. Dear Coco, this web site discusses disease symptoms in terms of emotional trauma, it may give you some insites;

    I sincerely wish you well

  25. I didn't know, but I can see how this type of acceptance can be freeing! Good on ya!


I love it that you came by...and thank you for your comments! Coco