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