a little infographic

:: Partly Cloudy  |  High of 36ºF  |  skin is calm, but extremely irritated

Back in 2012 I put together an infographic about photodermatitis. I have freshen it up to share with you today. You can print it or share it and help me spread the word. Let's bring awareness together!

"Lucky"

:: Breezy Night 70ºF  |  High of 81ºF  |  skin extremely calm

I am not the only one with photodermatitis in my family. My older brother was born with it and his skin would often break out much worse. 
My brother visited me a few weeks ago and after years of not seeing each other I held his arm and checked his skin closely. He had told me that the break-outs were not as intense now and that his skin somehow had "thickened", so I had to see it up close. For my surprise, his skin didn't have any irritation despite the 80+ degree weather and it looked darker, somewhat thicker as he put it.

Perhaps the first incident that "connected" me to my brother in a more higher level happened when we were very young, coming back home from visiting our family farm.

My dad drove an antique car and it was packed with our family – my mom, dad, brothers, sisters, and grandma. The car felt really hot and dusty. It was a long drive through rural Mexico. We came upon a riot in the middle of the highway, adjacent to a railway where a number of farmers had stopped traffic – and had also stopped the train. There was a lot of chaos – many cars were waiting in line and many people were out of their cars. Some were quite angry, yelling and screaming, and some were even praying. We spent the whole night there. Waiting.
By the morning my dad’s impatience had grown. When he turned around and saw my brother scratching and growing increasingly red, as usual, he got even more upset. He got out of the car and approached the farmers at the end of the line and told them that something was ‘wrong’ with his son. He stated that an insect bit his son and he was having a severe allergic reaction and needed immediate medical attention. I remember my dad coming back to the car and demanded that my mom cover my skin, as some of the farmers were coming to check on my brother’s ‘inexplicable’ skin condition.
After the farmers stared at my brother for awhile and discussed whether or not they should let us through, we were able to leave. They asked cars to move around so we could pass through.
I can’t really describe what I felt that day. I remember feeling both sad for myself and somehow taken advantage of by my dad as well.

So many years have passed since that day. I’ve since realized that my dad did whatever his instinct told him to do to get our family out of that unfortunate situation. While it wasn’t morally right for him to lie to those people, I can understand his desperation at that time. I only wish he would have talked to my brother and I after that incident. I wish he would have told us that he accepted us for who we were and that he wasn’t taking advantage of our condition.

I sometimes felt ‘lucky’ – relieved that I had not been born with the condition, only having it develop as I grew up and thankful that my break-outs were not as severe as my brother’s. I now know that I wasn't 'lucky'... I've been always fortunate to have this special bond with my brother.

Today I celebrate.

:: 63ºF (50% chance of rain)  |  sunny   :: skin extremely itchy
A few weeks ago, I came across Ariana Page Russell, an incredible artist that has sensitive skin too. Although her condition is different than mine, I felt connected once I saw her art. I loved to read her story, to see how she had found the beauty within her condition, and how she had translated it into something so meaningful (and even playful). 

I wrote to Ariana that same day to congratulate her for her beautiful work and also to pop a question, "How do you do it -- what do you say to yourself at the end of the day when you realize the condition isn’t going anywhere and despite all the positive attitude, the self-acceptance you work on in a daily basis, you still feel a little bit of longing for that “perfect” skin that others have?". A question that right after I typed, I realized it was directed to me. I was tempted to delete it. I felt dumb for asking that question, because I already knew the answer to it!

I am glad I reached out. Ariana gave me an interview that was featured on the Skin Tome community. It helped me refresh my memory about why I decided to talk publicly about my condition in the first place. It made me realize that the main reason I created art about photodermatitis and put it out there was to connect. It doesn't matter if that connection was with one person only, if for that person my work made a difference. 

I know it has made a difference for myself -- I now feel more comfortable in my skin, I have learned more about my skin disorder and my emotional health, and I appreciate my skin today more that I did my entire adolescence. I see this as a huge accomplishment, so today I celebrate! 

+ Printable mini poster is available here.

:experience life:

:::: 44ºF (feels like 41)  |  mostly sunny 

Because the photodermatitis continues even during these cold Autumn days. . . I am writing again.
Not with hopes that I will get a book out of it, but hoping that by logging how I feel at certain times of the day/season, I will better manage the condition.
...I sure wish I had continued writing about my photodermatitis after my Senior Project Show, so I could look back, read, and amaze myself with how much I have grown. Yes, I have grown.

So what's the big deal about photodermatitis anyway? Why do I want to bring attention to myself, you might be asking... About 73% of people affected with skin disorders in the United States do not seek medical advice... Why? Lack of information, but most importantly, because they feel embarrassed and even ashamed.

It wasn't too long ago that I still couldn't accept my own skin. There wasn't a day that didn't pass when I would look in the mirror and point out my scars and feel sorry (sometimes ashamed) about myself. I thought I had "created" it and sometimes I even thought of it as a curse...

Yes, I want to bring attention to myself somehow. I want that when people look at my skin, they know exactly what they are looking at. I want them to be aware of how common skin disorders are and instead of a "weird" look, they give me a friendly "hey, how is that photodermatitis treating you today?" kinda greeting. I know, probably too much to ask, but someone has to get it started.

:not my fault:

Paul said I should write regardless. . .  I am writing.

Fall -- favorite season. The hot, sticky, sweaty months are over, but the photodermatitis doesn't end.
I gotta be honest... I hate it!
I can't change it, I know. I can only try to manage it, and make the most out of it...
Every night when I take my clothes off the itch starts.
Sometimes the hubby comes around to help me sooth my skin. Either with kisses or lotion. Some other times he even grabs the ice cubes. Yes, the itch is irritating and puts me in a bad mood and sometimes I just want to be left alone, but I realize it is quite awesome that he just doesn't give in and continues to offer his help. He knows I need him to be there, reaching for the Aveno, grabing the ice cubes, or even hugging me as to constrain my hands, so I stop itching my skin.
I want to think that the photodermatitis has brought us closer... somehow. It is the one thing he knows for sure I can use some help with, because the "super woman" that I always try to be, can't handle it all at times.
I have to remind myself of those words I once wrote and remember that I am the one that might need most help after all...