Friday, May 31, 2019

10 Things I Need You to Know About Life With a Port Wine Stain Birthmark

Without meeting me, it’s easy to make assumptions about my life.

Why?

Because I don't look like most people.

Over the years I've had many people come up to my parents, husband, and myself to ask questions or to pass unkind judgement. Sometimes people are genuinely kind with their curiosity, but more often than not – there's just as much said in their uncomfortable body language and unpleasant tone as there is in their words.

Here are just a few that I’ve heard:

“I thought you were the girl who had something ‘wrong’ with her face.” 

“How’d you burn yourself?”

“You’re so brave for leaving your house. If I were you, I couldn’t do it."

“Doctors can fix that. Have you tried plastic surgery?”

“Is your husband beating you?”

“You’re too ugly for love.”

“Woah – were you in an accident?”

“Of course your beautiful, but you’d be more beatitude if that thing weren’t so prominently placed.”

Yet, very few (while making assumptions) get it right.

And that's the problem with making assumptions. That's the problem with jumping to conclusions.

I was born with a port wine stain birthmark.

But being born with a port wine stain birthmark – especially on my face – isn’t necessarily what you think it means, both medically and personally. And there are 10 things I need you to know before the wrong assumptions are made about my life and condition, and possibly the lives of others.



1. Three in 1,000 babies are born with a port wine stain birthmark – and that doesn't include any other types of birthmarks.  

2. I’m not brave for leaving my house. I’m just living my best life at Target, just like you. I’m not brave because I look “different” or because I’m a little more medically complex. This is my normal. It may not be your normal, but it is mine...Purple face and all. Stares, kind questions, harsh comments and all. I don't know life any differently. This isn't what brave looks like.

3. A port wine stain isn’t “just a birthmark.” It’s so much more than a skin pigmentation thing. Instead, it’s caused by development of blood vessels under the skin. And in my case? These blood vessels go all the way to my brain, affecting my gums, teeth, nose, ear and eyes along the way. (But we’ll come back to that in a bit.)

4. My birthmark constantly helps me protect my heart. It's a steal of a deal: "Get one birthmark, get a kindness detector free!" When people look at me, I typically get their instant, gut reaction to my face. Do they stare? Do they make a rude comment? I get to see people in a unique situation that most people don't. And let's be real – what girl doesn't love a good deal? Especially when it benefits her heart.

5. It's a free accessory I get to rock my whole life! I mean, I love the color purple – so what's not to love?

6. Doctors can't just "fix this." It's not that simple.

I'm 27 years old and I've had 53 laser treatments on my birthmark. And while yes, with each treatment my birthmark gets a little lighter, that's not my end goal of the treatments. My goal is to make sure the birthmark stays healthy. Without the treatments, the birthmark can grow blebs, my skin texture can change, I can have more symmetry issues than I already have, and it can bleed at random. The purple? I really don't mind it. The other stuff? Yeah, let's worry about that.

7. I'm definitely not "too ugly for love." And my husband? He always thinks I'm the hottest woman in the room.

8. Because my birthmark's blood vessels affect my brain and eye, I have a rare condition called Sturge-Weber syndrome (SWS). That means I've had glaucoma in my left eye since I was 8 years old, knowing I can go blind if I don't seek out treatment, and I've had migraines since I was 6. A lot of children with this condition also have seizures, and some are told they'll never walk or talk. My form of SWS is mild, but it's definitely there. But even without the SWS – my gums bleed, I get nose bleeds, and all my upper teeth on the left side are root canalled because of complications with the port wine stain. It's just not a simple condition. It's not just a birthmark.

9. I add a bit of color to people's lives around me! Not only does the purple add a splash of color to my skin, but it also adds a splash of color to my life. And with my humor and personality? There is always a story to tell!

10. Nothing is wrong with how my face looks. I don't feel the need to hide my natural appearance. I'm confident in who I am, as I am. I like what I bring to the table, and I won't change who I am to make others more comfortable. I am beautifully and wonderfully made! Birthmark and all.

I understand people are curious about how I look. After all, I don't look like the average woman. I mean, half of my face is purple.

Curiosity is normal. In fact, it's healthy! Curiosity helps us learn and grow.

But here's the deal: Curiosity should never get in the way of our kindness.

Sadly, when people meet me or see me out in public, staring is the norm – and so are awkward, unkind comments with harsh tones. Why? Because people sometimes see my birthmark first instead of my humanity.

If you ever see me and want to ask me questions – I'm totally open to them! I'd love to help you learn and understand what you're seeing. But instead of jumping to assumptions or having a one-way staring contest at my face, here's how you can start the conversation: "Hi. My name is _____. Do you mind if I ask what happened to your face?"

But after you ask me about my face, please don't forget to ask me what my name is, or if I'm having a good day.

Because just as much as I'd like to help you learn and understand what you're seeing – I'd also love to make a new friend.

The Travelin' Chick,
Crystal

Wednesday, May 29, 2019

I'm a Surgery Kid

***Trigger Warning: If you have a history of surgery trauma (especially laser treatments for port wine stains), the details of this post could potentially be triggering.***

I started treatments as a newborn. Here I am, around the
age of two, post-treatment.
Finding myself in a familiar room I had been in 20 times in the last eight years, it was cold. My jaw shivered as I craved for a warm embrace by my mother or my favorite blanket.

Instead, I was surrounded by strangers wearing white coats who only knew my name because of a chart – and because I was a regular. After all, I was a surgery kid.

The smell of the operating room never became normal to my nostrils, and I always disliked wearing the blue hair net that the doctors also wore – but unlike for me, I knew it was part of their routine.

Every surgery, at least I was able to take in one form of comfort – a stuffed animal. The doctors were always just as excited to see my stuffed animal as they were to see me, and this time it was a dog who carried a sock in its mouth. If you pulled on his treasure held by his cotton teeth, he’d let out a playful growl...And I couldn’t wait to show my doctors and nurses.

As I lay on the cold, metal table, knowing what was to come, I heard the growl and laughters coming from the nurses. I was right in my choice for this surgery - he added so much warmth to the room.

Then the mask covered my face.

I felt my IV burn.

My doctor performed his one rehearsed line well, “Count backward from 10...”

The smell was instant and was like no other, and I can still smell (and taste) it several years later.

“10, 9, 8...”

I knew I wouldn’t make it to “one.”

I never did.

Yet, every treatment I turned it into a game to see how long I could stay awake during the countdown; and alongside Monopoly and Checkers, it easily became one of my all-time favorite games.

Instead of hearing myself reach "seven," the next words came from my mother's voice, "How do you feel?"

I found myself trying to open my eyes – but only one was able to see the world's details and colors. Because of the swelling from the laser, my left eye was swollen shut and it would be for hours.

How did I feel?

Swollen.

Groggy.

Thirsty.

Hot.

Happy it was over.

Ready for pizza.

Ready to go home.

The surgery was over, and it would be two months until I'd have to go through the IV pokes, anesthesia, and surgery anxiety again.

And now that it was over? It was time to ring in the rest of our traditions.

A friend joining us for the medical adventure? Check.

Stuffed animal for operating room? Check.

Chuck E. Cheese pizza and games? That's next!

Shopping for a new book or toy at the Gilroy outlet mall? Yes please! 

We had a three hour drive to my treatment, and a three hour drive home. Mom always did her best to make it fun, and always gave me things to look forward to in the midst of all the pain.

And once we got home? It was time to heal.

The next week would be filled with Vaseline and ice, trying to prevent my face from blistering while it spent the seven days overheating. And after about a month? Then my purple skin tone would be back to my "normal," while slowly getting even lighter for the next six months.

When I reached the age of 11, everything in the operating room changed. Instead of sedating me for my laser treatments – they wanted to keep me awake.

"You can use a topical numbing cream for an hour before the treatment," they told us, "You'll be fine."

When I walked in the room for my "awake treatment," I saw a big chair waiting for me surrounded by a high-tech machine. My doctor and nurse had funny looking goggles close by, and an extra pair for my mom – who got to sit in with me.

Sitting in that chair for the first time, my heart felt as though it was beating three times faster than normal.

As the nurse gently wiped off the numbing cream on my cheek, I was handed a stress ball to squeeze during the treatment.

"If I'll be fine," I wondered, "Why do I need these?"

Mom's Willy Wonka glasses.
Everyone put on their goggles. Mom and looked at each other and laughed, "They look like Willy Wonka glasses!" Wanting to remember the memory forever, the nurse took a polaroid of my mom for me to take home.

It was time.

The doctor put my eye protectors on my eyes while asking, "Are you ready?" I cautiously nodded my head yes – not knowing what to expect.

Snap.

I squeezed the stress ball tight, "Oh. That's why they gave this to me."

Snap. Snap.

Instantly, I couldn't imagine doing this without this perfect surgery accessory.

Snap.


"Ouch!" I cried out as the machine lasered my port wine stain birthmark.


As a child I knew these treatments lightened my birthmark but that they were also needed for the health of my birthmark, which was caused by abnormal development of blood vessels in the skin. At the time, I didn't know all the medical jargon or technicality. Just the basics. But, in my case, these blood vessels go all the way to my brain. They affect my gums, the roof of my mouth, my nose, eye and my ear. Due to the eye and brain involvement I even have a condition called "Sturge-Weber syndrome" on top of it all.

So these treatments...they were important.

I also knew we drove three hours to get to the doctor's office, and three hours to get home.

But this time? This time it hurt.

"Do you need to take a break?" my doctor asked.

Without hesitation, I told him, "Yes!"

A few minutes later, we tried again.

We didn't drive all this way for nothing.  I had to push through.

Snap. Snap. Snap.

"I'm so glad my mom is in the room with me," I remember thinking. I really wouldn't have it any other way. Even though I couldn't see her, just hearing her voice was a huge help.

Snap. Snap.

The more he did, the more it hurt.

Snap.

What's that sound? Is something burning?

Snap. Snap.

My doctor explains to me that it's OK, it's just the hair on my face sizzling off. It's just my own skin.

Snap.

The pain. The smell. It's too much.

"Oww..." 

I couldn't do it anymore – and I had them take off my eye protectors.

And I instantly felt guilty for not handling the pain better. And even though I was only 11, I felt weak. I felt I should have been able to push through.

He warned me it would feel like a rubber band snapping on my skin, snapping on my young childhood cheek, and at times that was true. But some also hurt worse.

Feeling traumatized, but also confident in my appearance, I remember telling my mom at age 11, "I'm confident with who I am as I am. I don't want to go back. I'm done."

Her response was epic, "It's your body, it's your choice."

After that treatment, it would be seven years before I went back to the operating room.

When I was 18, I decided to Google my own condition because I realized one important thing: While I grew up with the port wine stain, having MRIs and laser treatments...I still didn't know much about it. And because I grew up being in their offices since birth, at some point, the doctors forgot to explain my condition to me – their patient. And I had to know more about the condition I was living with.

Learning more, I realized that without treatments, I was at risk of: Blebs, asymmetry, growth, skin texture changing. And I already had asymmetry issues on my cheek and lip.

Taking my results to my mom, I told her, "I want to have treatments again."

Just like icing on a cake.
She replied in a beautiful way, not realizing she gave a similar answer several years prior, "It's your body, it's your choice."

I'm now 27 years old and I've had 53 treatments. Even with the pain and anxiety I've experienced over the years, I don't regret my choice to go back. Because even with the treatments, I'm still developing blebs – which look like raised bumps on my skin that can bleed at random, especially if bumped wrong or scratched. And man, do they bleed. At this point I only have three...But without the treatments, would I have more?

Since my first "awake treatment," I've learned to put on the numbing cream like a pro – putting it on like icing on a cake, no hint of purple to be seen. And instead of holding one stress ball during the procedure, I ask for two.

My doctors constantly want to put the metal contact in my eye to treat it, but my reflexes and anxiety are too strong. After all...I can't put the numbing cream on my eye. It would be my skin against the laser, without a shield to protect it from the pain. As a result, my reflexes and anxiety win. They always overpower my doctors hands and persistence. Instead, they let me have anesthesia every three treatments so we can also treat the eye lid.

Because of technology improvement, the variation of the settings of the machine and the thick, bitter icing I wear on my face – most awake treatments are not nearly as painful as the first attempt at age 11. I'm also more mentally prepared, although I still wish my doctors would give me something to help me relax during the process. Yes, some treatments hurt a lot and I need more breaks to get through them. But then there are others where the pain is minimal and I don't need any breaks. For those, I'm done in about 10 minutes. But because of the trauma of the first treatment I had awake, and not knowing if it'll be a painful treatment day when I go in – the anxiety is always high a week before going in, and during the procedure.

As an adult, I still take a favorite stuffed animal to each treatment, even if it stays in my purse. But, I no longer go to Chuck E. Cheese as the after-party tradition. Instead, when I have treatments in California, have Jamba Juice for lunch and we go to Casa De Fruta afterwards, which is the halfway spot between my doctor's office and home. (Plus, they have the best rocky road.)

Me and my mom. <3 td="">
Now, however, I live in Nashville, TN. After 27 years I have to find new doctors to perform the treatments and new traditions to follow after they're done – which is a little scary as for a kid who grew up with an operating room comfort zone.

And at 27, my mother still goes with me to every single treatment, wearing the silly Willy Wonka goggles the doctor has to offer, and making jokes to make me laugh. I recently got married and moved across the country. During recent call with her, she asked me, "Are you having another treatment soon? If so, I need to know in advance so I can get a good rate on a plane ticket to be
there."

Because even though I'm 27 and married, she's still my mom.

And I'm still her surgery kid.

The Travelin' Chick,
Crystal

Friday, May 24, 2019

25 Questions Children Have Asked About My Facial Birthmark (With GIFS)

Over the years, I've been asked many questions about my facial difference. Many have been from adults, but several have also been from children.

...And the ones from the children? Those are my favorite.

As I've had conversations about my noticeable purple and asymmetrical facial features, I've noticed two things since my childhood:

1. Often (but not always) adults are a bit more cruel and harsh in how they ask their questions, or make their opinions known about my face.

2. Children? They're typical the opposite. Usually they're just genuinely curious and they're just trying to understand the world.

When it comes to conversations with the kids, sometimes their questions come out in a way that makes us, the adults, laugh or scrunch our brows. But if we fully listen to their tone, closely watch their body language, and go into the conversation with patience – we'll quickly realize that even if the question may sound odd at times, they're just trying to understand what they see. They're just trying to understand the world around them. They don't normally have an ill intent, or any intentions to hurt our feelings.

So why are conversations with children some of my favorite?

There are several reasons, really.

The main one: I count it a joy to help children become curious in a kind way.

In the last several years I've been a nanny overseas, worked in schools, and loved on my niece and kid cousins. I also speak in schools and youth camps. Any time a questions has been asked or conversations have taken place – I've written them down once they were finished.

This is my collection of just a few conversations I've had over the last few years – and it was hard to decide which ones to share today. (I've also added some fun GIFS to match!)

And these 25 conversations? They're gold. These conversations are the perfect opportunity to help the child's curiosity befriend kindness.



1.  Girl (Third Grade): "So that's a birthmark?"
Me: "Yep!!"
Girl: "And you've had it since you were a baby?"
Me: "Yep, I have."
Girl: "Did you get it from a hamburger?"
Me: "A hamburger?"


via GIPHY

2. Boy (Kindergarten): "What happened to your face? Did someone punch you?"
Me: "No. I was born with this. I've alway had it and always will."
Boy: "So...you were born and then someone punched you in the face?"
Me: "No. I was born with it, just like you were born with blue eyes. Same kind of thing."
Boy: "Ohhhhhhh!"


via GIPHY

3. "Do you have purple boogers?"


via GIPHY

4. "Where'd you get your tattoo from??"


via GIPHY

5. Student: "What happened to your face?"
Me: "It's a birthmark. I was born with it, just like you were born with brown eyes."
Student (with wide-eyes): "Actually...I was born with really crazy hair!"


via GIPHY

6. One of the biggest questions I get from children is, "Does the skin on you birthmark feel different?" They always want to know what it feels like, and I always explain to them that it feels like normal skin. In fact, it feels just like their skin.

One day, however, I was standing around several kindergarten children. Next thing I knew, the questions were coming...and so were their hands as they pet the side with my birthmark and then my "normal" side to compare the two. Usually my reflexes are much faster when a child tries to touch my face without asking – but that day? I became a human "petting zoo."


via GIPHY

8. "You were stung by a bee...Huh??"


via GIPHY

9. Boy: "What happened to your face?"
Me: "It's a birthmark. I was born with it."
Boy: "Yeah, but, like...what happened to your face?"


via GIPHY

10. Boy (Second Grade): "What happened to your face? Did you break it?"
Me: "No, it's a birthmark."(Then I tried to explain my port wine stain the best way possible in kid terms.)
Boy: "Ohhhh...I thought you brokeded it."


via GIPHY

11. "Did a spider bite you?"


via GIPHY

12. After coming inside from recess one day, some of the kids were hot. One of the kid's face was red from the heat and the other kids started pointing it out by saying to me with wide eyes, "He's turning PURPLE – just like YOU!!"


via GIPHY

13. Walking around the playground, I was stopped by a young boy, around the first grade. Looking at me, he told me matter-of-factly, "You're dirty."

Confused, I looked at my shirt to see if I had spilt anything. But it was clean.

I replied, "What? No I'm not."

Noticing my birthmark, he told me, "Yes you are. You have stuff on your face."


via GIPHY

14. "Why don't you have a tattoo on the other side too?"


via GIPHY

15. "Is your face going to explode?"


via GIPHY

16. "Are your teeth purple too?"


via GIPHY

17. Indicating towards my birthmark, a 5-year-old once asked me, "You like the color purple, huh?"

(I mean, why blend in when you're born to stand out?)


via GIPHY

18. As a 6-year-old boy was eating his breakfast, he looked up at me. Instantly his jaw dropped open as his face went to a look of shock and curiosity, followed by him intensely inquiring with his wide eyes, "Woah! Did you let someone color on your face with markers?!"


19. After explaining I was born with my birthmark, a child asked me, "You were born with it?"

Then looking even more confused, the child continued, "Wait...You were a baby?"


via GIPHY

20. "I saw this thing on TV that could help you."


via GIPHY

21. First Grader: "You've still got that old birthmark?"


via GIPHY

22. Fourth Grade Girl: "Were you kissed by an angel?"


via GIPHY

23. Child: "How do you shower?"
Me: "Just like you and just like everyone else showers."
Child: "Even with that thing on your face?"


via GIPHY

24. "Can I get one?"


via GIPHY

25. Second Grader: "Do you know what color your body is?"


via GIPHY

What questions have children asked you? What have those questions looked like? Share in the comments below, or on my Facebook page! (Feel free to add a GIF that matches the conversation if you'd like!)

The Travelin' Chick,
Crystal

Friday, May 17, 2019

30 Songs That Have Helped Me on My Journey With a Facial Difference

In my 27 years of life, I've travelled to about 13 countries and over half the US states. I've sat on more planes then I can count, been on at least eight cruises, and been on more road trips than I remember.

...But one thing all these trips have had in common?

They've all had a good playlist going in the background.

And my journey with a facial difference? That's no different.

For me, music is everything.

In the ups and downs, it's how I worship.

When there's unbearable hurt and I have no words, I find my heart's cry in the melody.

If it's a time of rejoicing, it gets me dancing. Celebrating!

Throughout my life, I've found myself listening to several songs on repeat. This list may seem long to some – but in reality, this is the shortened version. Consider this one my many mixtapes from my collection.

I hope you enjoy it.

1. "This is Me" by Keala Settle & The Greatest Showman Ensemble

If you've never heard this song...Wow. You're in for a treat. I've never even seen the movie "The Greatest Showman," yet this song is one of my all-time favorites as someone with a body difference. Anytime I need a boost, or I'm feeling extra confident – this is blaring from my speakers.

"I'm not scared to be seen
I make no apologies, this is me
When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I'm gonna send a flood
Gonna drown them out
Oh
This is me"


2. "Scars To Your Beautiful" by Alessia Cara

There's so much truth in this one line, "And you don't have to change a thing, the world could change its heart."

3. "Wonderfully Made" by Ellie Holcomb

Ellie Holcomb is one of my favorite artists, and this song? Oh, it speaks to my soul. 

4. "The Champion" by Carrie Underwood

Want fierce? Download this song, and hit repeat.

"I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion"

YES. QUEEN.




5. "Rise Up" by Andra Day


Sometimes, when we're "broken down and tired," we need the inspiration to rise up. When there's another surgery on the calendar, another MRI, another diagnosis – this song is here to help us do just that. When someone stares, or calls us another name – this song reminds us to rise up unafraid once more.


6. "Good Day" by Natalie Grant

While reminding Christians to keep their eyes on God regardless of what comes, this song is also fun and upbeat. So on the days where I need a good boost – this is a good reminder to keep my eyes on God...While having a little dance party to boot.

And, regardless of what comes my way, today will be a good day.



7. "Head Above Water" by Avril Lavigne

Sometimes all the medical stuff and unkindness of the world seems too much. At times, it can feel hard to keep our heads above the depth of life's water. If that's where you're at today, take a listen to Avril's song.


 8. "Me Too" by Meghan Trainer 

All too often I'm told I should hide my natural appearance. That I should cover my birthmark with makeup, or go see a doctor who can "fix that." If only I could break out into song every time comments like that are made, because then I'd sing songs like this one as a response.


9."Beyond the Stain" by Denise Nicholes

A few years ago, my friend wrote a song about my journey with a port wine stain birthmark. While it was written in honor of my story, I know I'm not the only one who can relate to the song.


10. "Priceless" by for KING & COUNTRY

"Mirror, mirror, mirror on the wall
Tellin' those lies, pointing out your flaws
That isn't who you are
That isn't who you are"

Sometimes we all need the reminder that the mirror can and does lie, and sometimes we use the everyday object as a tool harm ourselves.


11. "Mean" by Taylor Swift

We all have those people in our lives who are unkind. Cruel. Mean. And sometimes those people are strangers, a classmate, a coworker, or family member.

But this song? It reminds us that while they're mean, we can still overcome. That in the midst of their humiliation and "words like knives" – the cycle can end with us.

It can be so easy to take out hurt out on others, or even the one who started the unkindness. But the cycle? It can end. And I promise...we can overcome.



12. "Fighter" by Jamie Grace

If you're fire feels like it's starting to fade away, listen to this song.
"She's a fighter, got that fireWhen you thought she'd fade away"



 13. "Most People Are Good" by Luke Bryan

This song isn't necessarily about bullying or overcoming. But, because so often many of us experience so much unkindness, I felt it was important to drop this song in here to remind us of one thing:

"Most people are good"

For every unkind person we run into, there's at least two or three kind people around the corner waiting to meet you. 

They're out there.

I promise.


14. "Rescue" by Lauren Daigle

Really, you should just listen to Lauren's whole album. But this song? This song is everything. And the chorus? Wowzers. What a reminder that we're not alone, and that God even hears our whispers of desperations.
"I will send out an army to find you
In the middle of the darkest night
It's true, I will rescue you
I will never stop marching to reach you
In the middle of the hardest fight
It's true, I will rescue you"


 15. "Man in the Mirror" by Michael Jackson

Sometimes it can feel like the whole world needs to change how they see people who are "different." They need to treat the disabled better. They need to be kinder to people who have a body difference, they need to be more accepting. They need to stop staring. Stop with the names. Make better accommodations. Be more inclusive in the media.

While that's all true – sometimes we still need to hit pause on our advocacy work and look in the mirror. Yes, the world can do better. But how can we do better? How can we be kinder? How can we make the world a better place? How can we become better people?

The world...Man. It has a long ways to go, especially around disability and physical differences. But we should all constantly challenge ourselves to become better, to do better.


16. "Speak Life" by Toby Mac

It's not always easy, but we need to remember to speak life. We need to speak life to ourselves, to each other. We need to speak words of love and hope to our family, friends, our bullies and our enemies. Speak life – your words matter!


17. "Life's About to Get Good" by Shania Twain

Life isn't always easy. And yes, life has pain...Both physical and emotional. But don't forget – life also has joy. If you're in the hard parts of life, it's so important to hold on to hope.




18. "Pretty Hurts" Beyonce

Regardless of what the world says you should be – are you happy with yourself? Sometimes we all need a reminder to hit pause on the outside world and ignore what the world is saying, and ask ourselves how we're feeling instead - because sometimes, "it's the soul that needs surgery." Not our bodies.


19. "Try" by Colbie Cailat

Manicures and pedicures.

Blowouts and covering the grey strands.

Covering our scars, birthmarks, and what the world sees as a "flaw." What they call "imperfections."

Having the "perfect" image in the mirror. On Instagram.

...Do they like us?

We don't have to try so hard.

Really, we don't.



20. "Invisible" by Hunter Hayes

Do you feel invisible lately? Are you in pain from the sticks and stones that have been thrown your way? Maybe you need this reminder right now.



21. "Roar" by Katy Perry

Your'e a champion. And I can't wait for the day when people hear you roar.



22. "Who You Are" by Jessie J

There are so many powerful lines in this song. So much truth.

First off, Jessie points out bluntly that it's "okay not to be okay." And that alone is a beautiful thing. Because so often we feel we have to show that we are okay, when really, we're not. We we feel we have to show we're strong. That we can handle anything – the new nickname at school, the new bully, the new surgery the doctor wants to try. The new medication. But it's okay to not be okay. It's okay to be scared, to be sad. But please find someone to share your feelings with, someone to talk to.

Another line I love?
"Losing my mind on a tiny error. I nearly left the real me on the shelf."

Please never, ever, leave yourself on the shelf because of what you see as an "imprecation," or an "error." Please always dare to dream, and dare to chase those dreams – living your best life in the process.



 23. "Shake it Off" by Taylor Swift

Are you having a hard time with a new harsh comment or cruel name someone has called you? Ugh. I get it. I've totally been there...And it's hard not to stay there.

So crank up this song and DANCE.  Shake. It. Off.

It may not totally solve your problem, and you may still have a lot of healing left to do from the situation you're in...But doesn't a little dance party make the process a little more fun?



24. "Clay" by Grace VanderWaal

If you've been hearing a lot of negative comments surrounding your body difference, disability, or illness lately, this is for you. 

The analogy of this song is a beautiful one:
"Try to change my shape
But, baby, I'm not clay
Sorry, not today
'Cause, baby, I'm not clay"


25. "We All Bleed the Same" by Mandisa (Ft.  ft. TobyMac & Kirk Franklin)

From every race, to every disability. From every language, to every illness. We all bleed the same.


26. "Brave" by Sara Bareilles

Brave.

Everyone's brave looks different. And if you need an extra dose of brave today, this song is for you.

This song is for the woman wiping off her makeup to show her friend her birthmark after years of friendship, or posting that makeup free selfie online for all her followers to see for the first time – showing the world her facial difference.

It's for the one who wants to say yes to a new medication, a new surgery.

Or even the one who wants to try to befriend their bully.

For some, it's going on that first date – not knowing how that girl will react to your body difference.

Maybe a high school graduate wants to go to college, but they don't know if they can handle a medically complex life with college life. But they want to try anyway.

Brave.

We're all brave.

And we all need this song.



27. "Even Louder" by Steven Malcolm (ft. Natalie Grant)

Life with a facial difference? For me, it has been an up and down journey. There have been times of happiness and sorrow. Pain and celebration. But, "Even if the drums stop beating, my soul will keep on singing. Even louder, even louder."




28. "Defying Gravity" by Kristin Chenoweth & Idina Menzel

Sometimes we just have to defy gravity, to defy people's expectations they've put on our lives. And this is the perfect song to do that too.



29. "ME!" Taylor Swift

Because you're the only one of you – regardless of your medical condition. You're irreplaceable.


30. "It Is Well (You Make Me Brave)" by Kristene DiMarco & Bethel

This song is my go-to before every single surgery, no matter how big or small.

Why? 

Because through it all – medically, emotionally and socially – my eyes are on You. And it is well.



What songs are on your mixtape?

The Travelin' Chick,
Crystal



Thursday, May 9, 2019

9 People to Follow on Social Media With Port Wine Stain Birthmarks

Just like the world, the Internet is a big place.

And if you're anything like me – born with a port wine stain birthmark, or a similar condition – you're constantly trying to find new people on social media to follow who look just like you. People who can relate to you.

But because only three in 1,000 are born with a port wine stain and not all are in plain site (either by the person's choice or by where it is located), sometimes it can be hard to find new friends who understand the journey you've been on.

Friends who can understand the stares you've encountered.

The comments you've heard.

The stories you have to tell.

...And we all need those people – even if we don't know them personally. Even if it means that we see their photo and we instantly remember, "I'm not the only one."

Several weeks ago I did a call-out to see who you follow on social media that lives with a vascular birthmark of any kind. Since May is Vascular Birthmarks Awareness Month, it seems like it's now the perfect time to share the list with you!

You can follow me on InstagramYouTube and Facebook.
This list has nine beautiful people on it. Some are everyday people, some are more well-known, and some are extra famous.

Some let their birthmark show all day every day, and some use makeup to enhance the mark in creative ways. And from time to time, a few of them choose to completely cover the purple hue, while picking other moments to let it shine.

Some have undergone medical treatments and some still go in for their laser treatments and glaucoma checks.

Many on this list sometimes forget about their birthmarks, some can't forget.

Bullying.

Staring.

Harsh comments.

Medical treatments.

Sturge-Weber syndrome.

Klippel-Trenaunay syndrome.

Each of their stories are similar, yet each other their stories are so different.

But guys...

I need you to remember something.

As you read this list and as you go out in public, hearing those comments, trying to ignore the stares...

You're not the only one.

You're not alone.

1. Paige Billiot

Paige is an actress and model living in the LA area. Living with her birthmark, she sees it as a tool of creativity. She's constantly doing unique makeup designs and photoshoots featuring her birthmark – and she often includes others in some of her projects. You can find a makeup video she created with Buzzefeed to highlight her birthmark here.



2. Amy Elsegood

Depending on the day, Amy is found sharing pictures of herself flaunting her birthmark, other days she's showing photos of herself looking glamorous with makeup. Whenever she shares about her birthmark, she always gets vulnerable in the most beautiful and relatable way. And while Paige shows the more creative mashup for when a birthmark and makeup come together, Amy has been known to do makeup tutorials for everyday looks.







The struggles and self confidence issues that you face when you’re single and you have something that makes you slightly different to the rest is difficult. Imagine that feeling of taking your make up off in front of someone new for the first time or getting on with someone and having that worry that once they find out you have a birthmark they will no longer be interested because you are not the ‘perfect girl’ Sorry for the imperfect Instagram post but I just wanted to show the reality and I know that there will be many other girls out there that feel or have felt the same! Girls should empower each other. Always be kind and remember what makes you different is your barrier against unthoughtful and unaccepting people. πŸ™ŒπŸΌ✌πŸΌπŸ’‹ (p.s. apologies for the Kat Slater dressing gown πŸ€£πŸ™ˆ) • • • • #birthmark #awareness #inspire #portwinestain #pws #bblogger #beauty #instaglam #nomakeup #natural #fbl #different #beautygram #makeuplove #makeupblog #fbl #selfie #girlpower #powerofmakeup #strong #beforeandafter #hudabeauty #makeup #makeupaddict #makeuplover #blogger #bbloggeruk #instabeauty #motd #reality #lashes
A post shared by 🌸 Amy Elsegood 🌸 (@amyelsegood) on

3. Ed Sheeran

Did you know Ed Sheeran is part of the birthmark buddy group? I didn't either!...At least, not until last year, when I saw this video. Because of a laser treatment for his port wine stain where the doctors forgot to use anesthetics, Ed quickly began to struggle with a struggle with a stutter. And that stutter? That lead him to music.



4. Andrea Dykes

I recently stumbled across Andrea's Instagram, and man...She's a beauty! She's a pro with the makeup, but doesn't mind letting her natural beauty shine.


5. Patience Hodgson

Lead singer of Australian band The Grates, Patience Hodgson, has a port wine stain birthmark on her arm. Patience sees her birthmark like a protective barrier, “I love my birthmark’s spectrum of color. When I’m warm it’s a kind of red-purple, like the colour of some plums and when I’m cold it’s a vivid, almost neon blue. I also like how it’s a kind of protective barrier protecting me against non-accepting and unthoughtful people.”



6. Danny Larious

Danny is all about fitness, travel, and sharing about his journey with his birthmark that he totally rocks. Within his beautiful photos, he shares about his everyday life while proudly also sharing about his birthmark in the process.







This is a portwinestain birthmark. It’s not contagious. We can swim in the same swimming pool. And my mom didn’t do drugs when she was pregnant with me this is just how I was born. πŸ‘ΆπŸΌ I’m lucky not to have too many complications with it that I hardly think of it as a disease but it is. Today’s #nationalrarediseaseday so I’d like to contribute to all the special people with rare diseases in the social media world. You are not alone. ✌🏽✌🏽✌🏽. . . . Portwine stains are more than just skin deep. It is a disease that affects the brain, organ and blood vessels. People are born with vascular anomalies that can worsen as they grow older. They require constant monitoring, laser treatments and sometimes surgery. There is no cure for vascular birthmarks. Many adults and children living with these birthmarks also experience frequent seizures and glaucoma. Today is rare disease day. Here is a picture of one kind of birthmark. If you search Instagram you'll find birthmarks with moles, some smooth, some hairy, some dark some light. They are as diverse as the people they live on. No matter what kind of birthmark or disease you have. Live. Live you're life in pursuit of happiness πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„πŸ˜„ and be kind 😁😁😁😁 to all. Resist the urge to stare rudely at someone who looks different and instead say hello. Or if you are curious, ask about it politely. πŸ™πŸΌ✌🏻✌🏿✌🏾✌🏼✌🏽 #rarediseaseday #portwinestain #sturgewebersyndrome #birthmark #klippeltrenaunaysyndrome #iwasbornthisway #smile #fitfam #socialmedia #humpday #awareness #vascularbirthmark
A post shared by Portwinestained And Fit (@dannypws_fit) on

7. Berlange

My sweet friend, Berlange is a model living with a vascular birthmark – which also causes a rare condition known as Klippel-Trenaunay syndrome (KTS) in her leg. Her condition can cause all the typical symptoms a port wine stain birthmark can cause, like thickening of the skin, bleeding, and blebs. But with KTS, chronic pain can also be involved, and the bones can also be affected – just to name a few. While Berlange shares her beauty with the world, she also raises awareness for her conditions...while inspiriting the world in the process!






How about instead of focusing on trying to be perfect, reaching the unattainable summit.. we allow ourselves to be imperfect? How about we celebrate "imperfection"? "Imperfection" is actually the truth of beauty. Revive your light• Share your stripes• Bare your marks • • • • πŸ“Έ @osatoerebor MUA @malvarosebeauty Styling @livemylifed #BerlangeStory #BeRevealed #bestfootforward #bareyourbirthmark #kts #pws #perfectimperfections #redefiningbeauty #morethanamodel #milliondollarleg #breakthestigma #blackgirlmagic #underneathiam #comfortableinmyskin #embraceyourself #awarenessiskey #loveyourself #borndifferent #shareyourcolors #goddess #shinonegirl #differentisbeautiful #lavawalk #daretobare #untoldstories #fanmlakay #nolongersilent #pws #bareyourbirthmark #wlyg #lovetheskinyourein
A post shared by Berlange Presilus (@bellenge) on

8. Hannah Storm

Hannah Storm lives with a port wine stain. In the third grade, insecurity hit. As a result, she started going through a variety of painful medical treatments that left her with scares, in hopes of removal. Since then? She's learned about the improved and recommended treatments – and she's using her knowledge of vascular birthmarks to help others. As an adult with more information and resources, she's now helping other children get the medical care and surgeries they need for their birthmarks through what is now known as the Hannah Storm Foundation. To read more of Hannah's story in her own words, and to learn about her foundation, you can find that here.


9. Michelle Branch

While you can't see her birthmark in every photo, occasionally you can find this well-known singer's port wine stain under her right eye and above her lip. Occasionally she even brings awareness to the topic on Twitter and on Instagram, and once on Tumblr she shared, "I was teased growing up about the port wine stain birthmark I have under my right eye. Even to this day if I’m recognized when I don’t have makeup covering it, it makes me tremendously uncomfortable. I know I shouldn’t care about what people think but…surprise!"



I know the list can be much longer. In reality, this is just a sample size of many more amazing people.

If you have anyone you'd like to add to my list – feel free to email me or leave a recommendation in the comments here on my blog. In the future, maybe I can write up a part two!

The Travelin' Chick,
Crystal