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The Travelin' Chick,
Crystal
Wednesday, May 7, 2025
Monday, November 6, 2023
A Poem: Your Birthmark (Your Map)
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| Photo by Jeremy Cowart |
A birthmark on your face, a story that's so true.
A map of life's adventures, a tale of strength and grace,
In the mirror of your soul, it's a journey we can trace.
Your purple birthmark, a guide to the unknown,
A symbol of your courage, a path that you have grown.
Let's unravel the mysteries, let's explore the untold,
For this purple birthmark, it's a map we'll hold.
Oh, purple birthmark on Your face, a map of destiny,
Leading us to places where we're meant to be.
Through mountains and valleys, we'll navigate with grace,
For this purple birthmark, it's a map we'll embrace.
Each line and curve, a chapter of your life,
A journey of resilience, through happiness and strife.
With every step we take, a new adventure awaits,
Guided by this birthmark, we'll conquer any gates.
Oh, this purple birthmark, a guide to the unknown,
A symbol of your courage, a path that you have grown.
Let's unravel the mysteries, let's explore the untold,
For this purple birthmark, it's a map we'll hold.
With every twist and turn, we'll find our way,
Through stormy nights and sunny days.
This purple birthmark, a compass in disguise,
Guiding us to love, where our hearts will rise.
So let's follow the lines, wherever they may lead,
Discovering the magic, fulfilling every need.
For this purple birthmark, it's a map we'll forever trace,
A symbol of our journey, a map we'll never replace.
The Travelin' Chick,
Crystal
Monday, March 8, 2021
9 Products that Help With My Migraines
If you're anything like me, you're on the constant look out for anything that gives migraine relief. (After all, I'm sure that's why you clicked on my blog link, right?)
I remember my first-ever migraine like it was yesterday. I was six years old, and laying on the couch. My mom was worried, and I couldn't lift my head without tears streaming out of my eyes. Little did we know, that moment was the start of migraines becoming a part of my daily life due to my birthmark causing a rare disease called Sturge-Weber syndrome. Since then I've had countless MRIs to track my birthmarks affects on my brain, been prescribed preventive migraine medication, and medication to help migraines when they hit.
So, after 20-something years of migraines, and 20-something years of searching after products that have helped me...I thought I'd share what I have liked the most. But remember – I'm not a doctor. I'm just a professional migrainer constantly on the search, trying to share my findings.
Also, side note: I may earn a commission if you purchase something from the recommended links. And depending on when you read this entry, the prices may vary.
1. Shiatsu Back Shoulder and Neck Massager with Heat
This is one of my very favorite things I own in my self-care kit. This works out those tense muscles in the neck and shoulders that sometimes cause those migraines and headaches due to daily life issues. You can also use it on your lower back if needed, too! And with the arm straps? You can modify it as needed to put extra pressure on specific spots. For my life style, a major bonus is that this product also comes with a car plug-in for those long rode trips that can tire out the body.
2. Ice Roller
My usual go to is an ice-pack, which I'll share later in this list. However, I always keep this in my freezer. This has been known to help me as well. Not only does it have the ice-pack affect, but my husband can rub it on my neck or the back of my head – which is a huge help. This version of the ice roller comes with two changeable rollers, one plastic and one metal.
3. Gel Bead Migraine Wrap
This has newly been added to my collection – but I love it! Most ice packs that I buy cover my eyes because I usually love the black-out affect, but I don't always need that affect. Sometimes I still have energy and the light isn't what affects my migraine. This icepacks hits my temples, the front of my head, and has a velcro strap so you can pick how tight you want it to be. Often you can find me fighting my migraine on the couch, still able to watch TV with this on. Or, if it's an even better day – I may even be able to throw a load of laundry in or cook dinner thanks to this guy.
4. Migraine Stick
If you were to look in my purse, you will always find the migraine stick. If I'm out and about and I feel a migraine coming on, I take my medication but I rub some of this on my temples, neck, and head. It does have an essential oil scent to it – which I don't mind, but it's not been my husband's favorite. But for me, this is five stars out of five stars. When I run out – I'm definitely getting more.
5. Head Massager
When I'm experiencing a migraine, I for sure can't use this tool alone. However, if you have someone who doesn't mind loving on you a bit, this will be a good distraction during the pain and sometimes doesn't help. It's not usually my go-to, but I have been known to turn to this a time or two!
6. Airbag Head Scalp Massager
Out of all the things I've ever tried, I think I was the most skeptical about this. However, this won me over fast! This plugs into an outlet near wherever you're sitting or laying, and runs for 10 minutes. It velcro around your head, and fills with air compressions on and off – like an airbag. Just constantly. For 10 minutes at a time. I remember when my husband and I tried this out, and my husband (who doesn't even get migraines) told me, "I want to get another one for my desk at work. This is so relaxing."
7. Eye Mask
This is by far my all-time favorite things on this list. Ice packs just help my migraines like nothing else (well, except my medication), and this one blocks out the light and has a velcro strap that let's me adjust how tight I want it around my head. It also can be heated or used cold, and comes with a washable, soft, fabric cover. It's so soothing that I often will fall asleep using it, even in the midst of the pain.
8. Headache and Migraine Relief Cap
I like that this ice pack can cover the whole head. Most migraine-focused ice packs I have focus on the front of my head, or the temples, But this ones covers everything. The design even takes into consideration women's hair and the need to get it out of the way with a pony tail, too! I love the pressure of this cap, and of course – that it's cold.
9. Excedrin Migraine
Before you take this, I do recommend you ask your doctor if it's OK for you and your body and medical conditions. For me, though, if my migraine medication doesn't do my migraine justice, I switch to this. It doesn't take away my migraines, but it's a good ally to keep in the cabinet.
Now that you've read my list, what would you add to it?
The Travelin' Chick,
Crystal
Wednesday, January 6, 2021
After a Nurse Was Flippant About My Facial Difference
In October, at this very same doctor's office, I had met with a nurse who I had seen nearly every month during 2020 at my specialist's office. She knew who I was. She even knew my story. But this crisp day in October caught me off guard.
As she was helping me that day in the office, her forehead quickly began to wrinkle. Pointing to her face, she began to speak. Without a voice of concern, she instead nosily and rudely asked me, "What happened to you?"
Knowing it wasn't my first time there, nor our first discussion about it (not to mention that it is listed on my medical chart), I quickly became annoyed but tried to maintain my patience. This wasn't my first experience of this kind in a doctor's office. It isn't the worst, and it won't be my last.
Caught by surprise, I only replied on the spot with, "It's a birthmark. A port wine stain."
Flippantly the nurse replied, “Oh, that’s right. I guess I forgot.”
After this situation occurred, I went back to this doctor’s office and let my next doctor know about what happened with his coworker. I informed them that they need to know which patient they’re seeing before they walk into a room to properly treat them – and to show basic kindness and professionalism.
"I'm secure in who I am," I explained to the man who stood before me, "But as an advocate with a facial difference — I can tell you that sadly, that's not everyone's story. I've ready stories about women who are forced to wear makeup to bed by their husband's because their husband's don't want to wake up and 'see that.' A birthmark like mine is so common, it shouldn't of been handled so flippantly because the person behind the the skin matters. Emotions and the stories matter. Every patient matters. It's also a simple thing to just check the medical chart before walking in the room."
For weeks I never knew what occurred after I shared about what happened within those four walls.
Yet, the biggest gift was given to me when my phone rang that December morning.
Answering my phone, it was the very same nurse who saw me that day. The same nurse who had seemed so flippant about my facial difference.
"Hello?" I answered.
"Hello, is this Crystal?" I heard a female voice ask.
After confirming that it was, she went on.
"It was brought to my attention that I didn't handle our interaction very well last time we saw one another. In fact, I put my foot in my mouth and I chewed on it...And it makes me sick to think about it. I apologize."
She. Apologized.
Out of all the situations I've ever experienced in public, with doctors, nurses, on social media...This doctor is the first to ever apologize.
"I became a nurse because I care about people, and I have compassion about others. You didn't get me on my best day and I didn't show that to you, and again, I'm sorry."
Within our 15 minutes on the phone, we had a sweet conversation together. It was important to me to readdress some of the issues I told the doctor, because I wasn't here to just "complain." I was hoping to teach and educate. To hope for a difference and to share why this experience mattered to me.
But also? It was more important to show her forgiveness. Grace. I had no desire to sit in bitterness or frustration of this situation, and she needed to know.
"Out of all the situations I've ever been in," I told her, "You're the first to ever apologize. Whether it's in a doctor's office or not. You've gone above and beyond. Thank you."
Before we ended the call, we both ended the conversation by agreeing that we hope to see each other and work together again in the future.
I'm now 29. The last thing I ever expected was a call from this nurse to offer me an apology...And to show a willingness to learn. To understand.
Yet, this was a sweet reminder to expect the unexpected. To remember that kindness is still out there, even when it's not expected.
There is hope.
The Travelin' Chick,
Crystal Hodges
Friday, May 31, 2019
Stop Assuming Things About My Face
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.”
“Of course your beautiful, but you’d be more beautiful 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. In fact, I like the purple.
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. And I don't just feel beautiful – I am beautiful! 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.
Why?
Because I don't look like most people.
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.”
“Of course your beautiful, but you’d be more beautiful 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. In fact, I like the purple.
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. And I don't just feel beautiful – I am beautiful! 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
View My TEDx Talk Here.
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
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.***
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| I started treatments as a newborn. Here I am, around the age of two, post-treatment. |
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?"
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| Mom's Willy Wonka glasses. |
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.
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."
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| Just like icing on a cake. |
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.)
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| Me and my mom. <3 td=""> |
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
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