Monday, June 27, 2016

The Perspective of the World's First Artist

   
Shades of yellows, reds, and oranges invaded a once silver plated barn, rusting the surface inch by inch.  Day by day, the youthful metallic shine lost its glow by each sunset.

To many, this building is old.  It's useless, becoming more condemned by the day.  The still-standing building may even be forgotten by the majority, no longer holding any value as its use declines.

As a traveling photographer, this building caught my eye almost instantly.  The rustic look is uncommon in my every day world, and I think it's beautiful.  Walking around the building, taking pictures at different angles, the building stands out to me more and more, becoming more beautiful by the second.

It's rustic, but the ever changing color variety adds character.  It's old, but it has stood the ages of time.  It has been like a flower on the wall in the lives of many, and served a much needed purpose.

After I took several photos and pulled my camera back up to my eye...it hit me.  

How many times have I felt like I was in a similar state as this barn?  More often than I care to admit.

Useless.  Forgotten.  Invisible.  Nothing special, my dreams and I condemned by others around me.  No longer of any value.  Dulled, no longer shinning, after being hit by pouring rain from life's storms and struggles.

How often have I felt this way as God, our creator and the world's very fist artist, saw the true beauty within me?  Seeing me through a different lens than the selfie camera I've been seeing myself through? 
  

How often have I felt invisible, forgetting God has seen me every second of every day?

How often have I felt useless, not realizing God was molding me for a new purpose, and using me right where I was planted?

How many times have I felt forgotten, while forgetting to connect with the Almighty? 

How many times did I evaluate myself low because of my humanly skewed perspective while God whispered, "If you only knew you are worth so much more"?

How many times have I felt damaged and rusty after a life storm, feeling impatient as God helped put me back together again - often leaving me stronger and more beautiful than before?  Forgetting that my foundation was strong and sturdy, and that I could rely on it?

I'm not sure what you're going through right now.  Maybe you're going through a tough storm, or you're burnt out.  You may be incredible stressed, and possibly carrying the weight of the world on your shoulders.  And in the midst of your struggle, you may feel forgotten, invisible, and as though you're losing your shine.

Here's the deal...You are valued.  You are seen.  You are known.  He always remembers you, and He's waiting to help you with the heavy load that the world has unexpectedly thrown into your arms.

You. Are. Loved.

We may see our selves through our cheap, limited selfie camera, but God sees us through all of the best angles and perspectives around.  He captures your beauty, heart, and worth better than your favorite photographer ever will in a lifetime.  

The Travelin' Chick,
Crystal

Tuesday, June 21, 2016

Articles, Interviews, and Blogger Spotlight



Wowzers.  It has been a busy month!

I'm going to keep this blog entry short, but I wanted to share a few new links with you.

Two weeks ago I had the honor of being a guest on The Ed Tyll Radio Show.  In the interview, I talk about my journey with my facial birthmark, my upcoming book, and going viral on Facebook to over 30 million people.  I also talk about growing up, and other parts of my journey.  Instead of giving me 15 minutes like he mentioned in his original email, I was on air for 24 minutes!  This is my very first live interview, and I'm excited to share it with you:



Around the same time, a journalist in the UK shared my story.  So far, this may be my favorite article written about my journey.

In addition, I was also featured as a Blogger in the Spotlight on the Jigsaw Parenting Blog.  You can find that written interview here - and check out some of her other articles while you're there. :-)

A few weeks ago I had a new article published on the Mighty, To the Man Who Turned Me Into a Meme.

You can also watch my friend's webinar, which I was a guest on in May.  My friend, Dawn Shaw, also has a facial difference and has several episodes of her Webinar on YouTube, which I think you'll enjoy.  She's also published a couple of books, Facial Shift: Adjusting to an Altered Appearance and Friending the Mirror: Changing How You See Your Reflection.  Check my interview with Dawn:


That's pretty much it for now.  More is to come soon, such as a couple of podcasts I've been a guest on, other articles, etc.  Feel free free to share any of these links with your friends and on social media.

Thank you for following me on this journey, and for your continued support.

The Travelin' Chick,
Crystal

Saturday, June 11, 2016

To the Man Who Turned Me Into a Meme

Collapsing on my bed after a long day of classes, I kicked my shoes off and opened my computer. Once my screen lit up, I signed onto Facebook for a short, mental break. I had my usual 15 notifications, but one from a friend really caught my eye: “I saw your picture in my newsfeed today.” 
My picture was in her newsfeed? Confused, I clicked on the attached link… and there I was… along with a stranger’s logo and three simple words: “one like = beautiful.”
I was going viral… to over 30 million people around the world. One share alone has over 256,000 “likes.”
You and I are total strangers who live thousands of miles away from one another, yet our lives have deeply intertwined. Like millions around the world, you don’t know my name, but if you saw my face, if you saw that meme, you would recognize me because two years ago, you created that meme.
Like most people, I occasionally post a selfie online. However, my face doesn’t look like most people’s. I was born with a port wine stain birthmark that covers a good part of my face. And the selfie that was going viral? It was taken just 20 minutes after a laser treatment, which is used to prevent future medical complications, as my birthmark is at risk of growing. (And I blog and speak about my condition, unique experiences and perspective.)
Growing up with a physical difference, I’m accustomed to people staring and making awkward comments as I walk by. It wasn’t until I was 18 that I realized these experiences, which are my normal, aren’t most people’s normal. In fact, most days I forgot about my birthmark. For example: When I was 16 I dressed up as a biker for Halloween and went to a trunk-or-treat with my friends. Several people freaked out, asking me if I fell off my motorcycle, afraid I was hurt. I was confused for an hour… and then it hit me, and I just laughed.
Most people don’t get gawked at in public, and they aren’t told they’re “contagious” or that they are “brave” for leaving their house. But I do. And it happens often. Yet, even then, I still didn’t realize how different I must look… but then you turned me into a meme.
Knowing I hear comments on a regular basis, I stared at my non-blinking, meme-ified selfie and thought, “Why not read a few comments? What’s the difference from reading them than hearing them?”
So I spent a few hours and read a few comments.
Or… 30,000 of them.
As of 730 days ago, a day hasn’t gone by where I have forgotten about my unique appearance.
They say pictures are worth a thousand words. When I went viral, my name, story and my words were missing. Instead, complete strangers were making up their own 1,000 fictional words to go with it.
One man accused me of drowning kittens, and many assumed I asked you to post the image, thinking I didn’t have any confidence in myself. Several pleaded to get me connected with a good plastic surgeon so they could “fix that,” some flat out called me ugly and some wrote, “She’s beautiful, but would be even more beautiful if that weren’t so prominently placed.” A few thought it was just face paint on my cheek, and even fewer knew it for what it was: a birthmark.
While it was my own choice to read the comments, it turns out, there is a difference between reading 30,000 comments within a few hours versus hearing one comment a day. In the midst of this fiasco, one thing stood out to me: both my condition and story were completely misunderstood.  
I was angry with you for the longest time. For nearly 730 days, I resented you. But you don’t deserve a 731st day with me. This experience has fueled my desire to be a speaker and writer, but that’s where you’re influence in my life stops.
For the last two years, I’ve been taking back my selfie. I’ve been taking back my story. I know I am more than some meme that mimics one stranger’s simple perception of my image. I am so much more than thousands of fictional words your followers left next to it on some social media site.
My name is Crystal. I’m the person in this meme. However, in this edition of it, I’ve made some changes. It’s the same meme that went viral two years ago but with a twist. While there is more to my story and more to who I am, thanks to the help of my friends, this image has been created with 10 words that describe who I am.
I’m a writer and a speaker. I’m a friend and a God-sized dreamer. I am creative, confidant, a writer full of wit, and I am talented. I am loved by many — and just like you, I am human. Best of all? I know I’m wonderfully and beautifully made.
It’s time for people to hear my real story, to read the true message of my story and my image. I’m taking back my selfie, owning that meme… taking it back one word, one blog entry and one article at a time.
I’m proud of who I am, as I am. I like the way I look — and I’ve never needed thousands of strangers or the internet to validate my beauty or confidence. After all, we all have differences — I just wear one of mine on the outside. And it’s my goal to make a difference with my difference.
The images surrounding mine on your page were other memes you created: kids with cancer, premature babies and people with missing limbs. You’ve been using images of people (without their consent) to pull at the heartstrings of people, to pull them towards your page. Simply put, that’s not cool. You alone have almost 28 million Facebook followers. Your audience is large. Your influence is strong. Please use it with kindness and wisdom.
Before you take someone else’s photo to make your next meme, remember that image is much more than pixels on a screen. They are writers, singers, travelers, friends, sons and daughters. They are dreamers who reach for the stars and dare to change the world. They too are a human — and they are loved.
Sincerely,
Crystal

Sunday, May 1, 2016

Looking for Lovely (Book Giveaway)



[Cover art by @matt_lehman and photo cred to @mdez]
A few weeks before Easter, I applied to be on my favorite author's book launch team.  Applying, I had no idea what the book was called, I had no idea what the book was about.

A few days later, I was accepted for Annie F. Downs' book launch team...And the book we'd be launching?  Looking for Lovely: Collecting the Moments that Matter.

Soon after being accepted to the team, I began reading Annie's book.  Soaking up every word, I scoured each page and pressed the messages found between the two covers into my heart. I put adulting off for 24 hours, just so I could focus on the book and the message within it.

In Looking for Lovely, Annie shares about some recent, personal struggles and pains - and how she found lovely moments in-between the struggle.  She puts it perfectly in the video above, "I started to realize that if I wanted to get to the breakthrough from the break down, I had to find reasons not to give up along the way...And those were these little, lovely, moments."

The book was an amazing read, and just what I needed...Yet, that idea of lovely, hidden beneath the surface, became all the more real as Easter approached.

On Easter, I spent time with my family - including two 1-year-olds (Madison and Erica) and one 5-year-old (Rayna).

Madison and Erica, while just a few months apart, had different levels of understanding on the whole Easter egg hunt tradition.  Erica is the older of the two. Like the trained pro she is, confidently picked up each egg, opening each one, looking inside for expected pieces candy.  Madison, just a few months younger, had to be guided to search for the eggs, still not realizing that beyond the lovely outer shell of the egg, there were more lovely things within the shell.  She was constantly reminded by her father, "You get to put this in your basket - this egg is yours to keep."  And upon encouragement and being reminded that she was allowed to take and embrace the lovely eggs as her own, Madison held onto the vibrant, plastic, egg, savoring the sweetness it entailed.  
  

Rayna, at age 5, knows the Easter routine.  And now that there were two younger children in the family?  Not only did she get to hunt for Easter eggs, but she also had the chance to hide them for the younger children as well.  While Rayna was excited to hunt for the eggs, she was overjoyed to have the chance to hide them, helping the younger kids search for them when they walked outside.

Watching the traditional Easter celebration take place in front of me, Annie's book came to my mind.

It's important to look for the daily, little lovely things in life.  It's also important to create our own lovely moments, treating ourselves to our favorite meal or waking up in time to see a beautiful sunrise.  Sometimes, however, we forget to take the time to do so.  Or, once we hit adulthood, we get caught up in the hardships and stressors of life, forgetting to embrace the beauty in the smaller lovely things, forgetting to celebrate the joys a simple piece of chocolate can bring our way.

Children are great at finding the lovely things.  Watch any child on the playground and it's evident that they're pros in the matter.  What adults see as a weed, a child often sees a beautiful, yellow, flower.  Working at an elementary school, I once had a 7-year-old run up to me with dirty beads in their hands.  As they handed them to me, I found myself asking, "Why are they handing me a pile of dusty beads from a broken necklace?  Why aren't they just throwing them into the trash?"  But then, their words broke my thought process, "Ms. Crystal!  Look at what I found!  Aren't they beautiful?  These are for you."  What I saw as trash, they saw as lovely.  They saw it as a gift to share with others, while I forgot to look past the dusty exterior.

   
And on Easter?  At first, we're taught and guided to look for the Easter eggs,  reminded to look inside to find the egg's contents, because there's so much more depth to the hollow egg.  We just have to look a little closer, just like I had to look beyond the dirt layer on the beads.  But, once we have the hang of things, we get excited for each egg we find, opening each and every one, like my cousin Erica.

Watching Rayna filled with excitement, dancing across the front yard, hiding eggs for the younger kids, it dawned on me...It's important to look for daily, lovely things...But it's also important to plant lovely things for others to find as well.

Whenever I receive a piece of snail mail, my heart gets all kinds of happy.  A letter or a postcard brightens my whole entire week, just knowing someone thought of me and took the time to send the piece of mail my way.  Yet, to find the lovely note in the mail, someone had to write it, they had to send it.  They had to take the time create the moment.

When I am stressed or am having a bad day, I often find myself in the kitchen baking a batch of cookies, cake, or making my signature truffles.  The next day, I take whatever I bake to school or to work, hoping to encourage others around me - hoping to add a little sweetness to their day.  When I share the baked goods with others, seeing their faces light up and I realize the impact one cookie can make, a bit of unintentional loveliness is often added in my own life.

"Look at this stuff
Isn't it neat?
Wouldn't you think my collection's complete?
Wouldn't you think I'm the girl
The girl who has everything?"
While we need to look for lovely things and lovely moments in our own lives, the power of adding lovely moments in the lives of others is undeniable.  In the midst of a chaotic life, we need to remember to take time to place Easter egg moments in the lives of others, filling them with chocolate,  moments of laughter, or words of encouragement.

When you pick up this book, make sure you have on comfortable pants for all the laughter, and a box of tissues by your side to help catch your tears of healing. In Looking for Lovely, Annie transparently takes you through some of her hard and beautiful life moments - sharing her insight and wisdom on finding daily, lovely things, regardless of her life's surroundings...Which is a life-changing skill once we learn and remember to find our own daily, lovely moments.

Annie will instantly become your best friend as your flip through the pages between the covers. I read Looking for Lovely in less than 24 hours, and was ready to read it again when I finished the last chapter.

And here's the thing...Not only am I recommending this book to you, but I'm also going to give copies away to two of my readers.  How can you win a copy of the book?  'Like' my Crystal Hodges page on Facebook, share this blog entry (let's spread some lovely around!), and post a comment saying, "I want a copy of Annie's book."...And BAM.  You're entered.  Simple, right?  (Winners will be picked on May 9th, 2016.)

This book is a must read. (As are all of Annie's books.)

This book is lovely.

The Travelin' Chick,
Crystal

PS: Friends in and around Nashville, there is a Looking for Lovely weekend taking place this July!  I'll be attending the event and I hope to see some of you there.  (There are only 125 tickets - so get yours soon!  Check out the video below for more information.)



Thursday, March 10, 2016

Why I Dyed My Hair Purple

Okay...So I didn't dye ALL of my hair purple - but I'm getting ahead of myself.

I started having laser treatments on my port wine stain birthmark as a newborn.  Growing up, we had a tradition to stop for lunch at a two-story Chuck E Cheese after each procedure.  Our stop for pizza was then always proceeded by a stop at an outlet mall, where my mother would spend up to $10 on a new toy or book.  As an adult, our Chuck E Cheese tradition has changed to a stop at a Jamba Juice, followed by a second stop at a fruit stand, Casa de Fruta.

Just a month or so ago, I had my 50th treatment.

Yep.  You read that right: My 50th.

Each treatment sends about 300 laser pulses through my skin, bursting and cauterizing the blood vessels in my face.  Multiply that by 300, and that's about 15,000 laser pulses total.  (Without the treatments, my birthmark is at risk for growth and can develop medical complications.  Even with the treatments, my birthmark has experienced some slight growth.)

About a week or so before my treatments, I always get anxious and stressed.  The smells, sounds, and pain are imbedded in my mind, and I do not look forward to the appointment.

When I realized I was coming up on my 50th treatment, however, I knew I had to do something fun.  People always throw a big birthday bash when someone turns 50, so why not do something similar for my 50th treatment?  After all, if something isn't naturally fun, that just means you gotta find a way to make it fun - right??

Here are 7 ways I made my 50th fun:

1. I made ninja sugar cookies with birthmarks.  Okay, strike that.  I made wanna-be ninja cookies with birthmarks.  Instead, they look like people in weird onesie pajamas doing awkward dance moves. Clearly, I am not destined to be a professional cookie designer.


My first batch looked like sumo wrestlers.  So BAM.
Here's a sumo wrestler with a birthmark. #Flexibility
See.  People in onesie pajamas doing awkward dance movies.
You're welcome.

Okay.  So maybe THIS is why my cookies aren't top-notch.
Oops.
2. I got my nails done.  Making an appointment with my aunt's talented friend, I had my nails painted with the logo of The Vascular Birthmarks Foundation (VBF).  Not only are they the leading nonprofit for vascular birthmarks, but I am their social media coordinator and anti-bullying campaign manager - so it seemed fitting.

Thank you, Paula!
3. Girls have to color coordinate, right?  So that's what I did.  I went to my hair guy and got a few purple highlights put in, color coordinating my hair to my face.  I mean...After all, if my face is permanently purple - what are a few temporary purple highlights? ;-)

My friend, BreAnna, sent me this on Snapchat (crystal.hodges).
It was too adorable not to share.

My hair guy, Sean, is the best.

4. We went to Jamba Juice and Casa De Fruta...Keeping the tradition alive.  Casa De Fruta has the best rocky road (candy) that's impossible to say "no" to, and it's a great place to stock back up on for ice for my icepack.  The drive from Fremont to Casa De Fruta is also a beautiful one.  Nothing compares to the view.  (I should point out that the drive to each treatment is 3 hours each way.)

That. View.

5. My baby niece went with me.  Once my treatment was complete, I received instant baby snuggles.  Now that, my friend, is the way to have a treatment.

She is the cutest, I know.  (Oh, and my birthmark didn't turn super purple like
it normally does.  That's a whole other blog entry, though.)


6. We bought party hats and glasses, and I took selfies with my doctor.  (Yeah, he's pretty great.)  A sash was also on my list, but I didn't want to get too crazy. ;-)

Parrrrrttttyyyyy.


7. I wore my Natalie Grant necklace, "Faith Over Fear".  Every treatment I wear one of her pieces.  I love Natalie's theme, "wear it. live it."  I wear a different one every treatment, varying on my mood and struggles.   During this treatment, I also wore her "Dare to Be" bracelet, reminding me to dare to be confident, beautiful, known, and loved - during and after the treatment.  (Side note - did you all see my blog entry about my God-sized dream coming true, when I shared the stage with Natalie in January?  Check it out here.)

*Insert heart emoticon here.*


Turning my 50th laser treatment into a party didn't take the physical pain away.  However, it did give me something fun to focus on, decreasing my pre-anxiety and stress, all while creating a way for me to celebrate my strength and milestone.  (I'm not sure we celebrate our moments of strength enough.)  It made the days leading up to treatment more enjoyable, and what was once a medical procedure got turned into a party.  All it took was a different, refreshed perspective.

Is there anything you're struggling with?  Are there any situations in your life that need a bit more fun added to them?  Embrace your creativity.  You never know what you'll come up with. :-)

The Travelin' Chick,
Crystal

PS: In my defense, while I can't decorate cookies very well, I DID make some cute Princess Leia truffles.  (This was only my first attempt.  The decoration ideas are original and my own.)






Wednesday, February 24, 2016

My Battle with the Boogie Man


Have you ever been afraid of the dark?  Or cried out to your parents, with a trembling voice, in the middle of the night, "The boogie man is under my bed!"

Parents know there's no such thing as the boogie man.  Yet, like a knight in shining armor, they run into your room, turn on your light, and check your closet and underneath your bed.

In the last year, I've struggled with an adult version of the boogie man.

To give a little background: I've had migraines since the age of six.

I remember my very first one, actually.  It was so severe and three-fourths of a life-time ago that some of it's a blur, but I remember it.  My head was throbbing, feeling like a man was in my head, using my brain as a punching bag for his boxing practice.  Mom was worried.  An icepack sat upon my head, and any time I tried to lift it off the pillow, the excruciating pain intensified...And I cried.  A lot.

After my first migraine, I got them enough to have a special prescription to help with the pain, but
only needed to take that about once every 4-6 months...Although, because I got them so young and would talk about them as a child, I remember many people thought I was just exaggerating regular and simple headaches.

In 24-years, I've seen a few doctor's on the subject, ranging from a neurologist (brain doctor), geneticist (genetics doctor), and a Sturge Weber Syndrome specialist (also known as SWS - but we'll get to that in a minute).

All have told me that while some children get migraines, it's rare for a history of migraines to start in 6-year-olds...Even for someone like me, whose family has a background in the area of migraines.

As an adult, and because I'm no longer a bald baby,
people can't see the side profile outline of my birthmark.
I'm glad my parents took this photo, which is a great visual.
And wowzers.  Can I just point out how much lighter
my birthmark has gotten since my infant years, and
after 50 laser treatments?
There's a topic I haven't written much about.  Most of you know that I've written about my journey with a vascular facial birthmark, a port wine stain.  (I'm also in the the process of writing a book, so stay tuned for more information.)  Depending on how long you've been a reader of mine, you may or may not know that my birthmark is way more than a skin pigmentation condition.  It's caused by extra blood chillin' in some of my blood vessels.  And depending on a case-by-case scenario, the depth of this "birthmark" varies.  (Birthmark in quotes because there is way more to a port wine stain than meets the eye.)

In my case, it does affect the coloring of the left side of my face.  However, it goes much deeper than that.  It's in my left ear, in my left nostril, on the left side of my gums, and on the roof of my mouth (once again, only on the left side).  It also goes all the way to my brain, and affects my (left) eye.  While I've had migraines since the age of six, I was diagnosed with glaucoma at the age of eight.  Since then, I've had to use eye drops twice a day, doing my best to keep the pressure in my eye stabilized so I don't go blind.  (By the time they realized I had glaucoma, I had already lost a little bit of vision - but "not enough to tell".)

Not everyone's facial birthmark reaches their brain.  From my understanding, when it does reach the brain and affects the eye, that means that the gene that causes the port wine stain started to mutate sooner than those who don't have an underlying condition.  When it does affect the eye and/or the brain, however, that child is known to have a second condition - SWS.

But here's the thing...I have SWS.  I've just never spent much time writing about the condition because it freaks. me. out.  My doctors were confident I had it since I expereince migraines and my eye is affected, but they weren't 100% sure I had it.  It's a super rare condition and they pretty much (admittedly) know nothing about it.  (We'll get to that in a minute too.)  It wasn't until October that I saw a team of SWS specialists (for free) and got an official diagnoses, thanks to The Vascular Birthmarks Foundation and their annual conference.

Once I had the official diagnoses, and even though all my other doctors were only about 80% sure - my chart only said something along the lines of, "likely to have SWS" - just in case any new symptoms were to appear.  But with an official diagnoses by one of the best SWS specialists around?  I finally felt like I could claim it as my own, and I officially had the right to write about it.  (...Even though it still has taken me nearly 5 months to write about it on such level of depth.)

There's so little that is known, but the stuff that is known terrifies me.  Google SWS, and it's not light reading material.

Just like any condition, the severity level varies from person to person.  Some parents are told that their child will never walk or talk.  Many experience seizures, which in some cases, results in needed brain surgery.  Some have developmental delays of motor and cognitive skills.  Like myself, if the port wine stain touches the eye, they can develop glaucoma.  Many people with SWS experience migraines...And that's the just a small portion of the list of the stuff that is known.

While I have MRIs every couple of years to watch the blood vessels near my brain (and have done this since I was a small child), I didn't start having questions about my condition until a few years ago.  Once I had lengthy list, I went in to see my trusty neurologist.  This is how our conversation went:

Me: What's up, doc?  How are you?
Doctor: I'm great, how are you?
Me: I'm doing well, but I have a ton of SWS questions for you.
Doctor: Okay, what's up?
Me: Alright...Question number one! (*Insert whatever the question was.)
Doctor (with a deer-in-the-headlights look): I don't know the answer to that one...Truthfully, in all my years of practice, you're the only patient I've ever had who has SWS.  You probably know more about the condition than I ever will.
Me: Oh, okay.  Well, by chance, do you know the answer to this question?  (*Insert question two here.)
Doctor: ...(deer-in-the-headlights part two)...
Me: Oh, okay...Never mind.  Do you know of any neurologists who specialize in SWS, or have more understanding and knowledge on the topic?
Doctor: I'll find out for you.

...And that was about three years ago, and she's not yet told me of a SWS specialist within my healthcare's organization.  (Even my laser treatment doctor hasn't been able recommend one to me.  And I ask...a lot.)

Since my doctor didn't seem to have answers, I'd turn to Google for them instead.  But even then, there was only a 50/50 chance of finding my answers, so I stopped asking...Until May of last year, which was when my brain became a hot spot for migraines.

That month is a blur.  I just remember staying in bed for many of the days, my head under a pillow to block out the light, migraine medication by my side.  The migraine was a constant, month-long, torture, often buddy-systemed by blurred vision, weak muscles, and stomachaches.   (Fact: Did you know there is such thing as a "silent migraine"?  That means the sensation of the headache may not be felt, but the other symptoms such as blurred vision may be clearly present....See what I did there?  "Blurred vision may be clearly present"?  That was a terrible migraine joke, I know...Anyways, I've also experienced a silent migraine as well, ending me up in the ER when I was freaking out about my lack of ability to see correctly.)

I even had great sunglasses swag as a child.
(Go me!)
Sometimes with a migraine, I can function.  I may have to wear sunglasses inside, but I can pull it off.

But, after about two weeks, they progressed.  I started canceling on friends.  My weekends were spent in bed.  Church was missed.  And then I started missing a few days of work - which is when I knew I had lost control of all the pain, and my body.  Barely functioning with some cool sunglasses swag wasn't even on the table anymore...And my questions started to build up again.

During my recent appointments with the geneticist and SWS specialists, they all agreed, "While your family has a history of migraines, I'm confident this is your SWS as you started to get them at the age of six, which is not normal for a child that age."

Since May, I've found myself taking migraine medication 2-3 times a week, depending.  Sometimes it's more as a preventative measure when I feel one coming on, sometimes because it's the full, real deal.

And then this week happened.  Sunday I had a, "I can't lift my head up off the pillow without crying" migraine, and I just woke up to a similar one a few hours ago.  (I'm so glad the medication worked quickly today!)

Crying, I told God, "I don't like my brain.  Wait, strike that, I like the contents of my mind - I'm just really mad at the actual organ right now.  Oh, wait...Never mind.  You're God - you know what I mean."

Until tonight, I've thought, "SWS scares me.  It freaks me out"...But I don't think I had officially told that to God.

My assumed SWS migraine symptoms have drastically changed in the last year, and that scares me.  Seeing how that has changed, I can't help but wonder if anything else will change.  While most people start having seizures as young children, there have been cases where SWS patients develop them as adults, some in their 50's...And that's my biggest SWS fear.

In the last year I've bounced back and forth between two different "Why me?" questions.

"Why me?  I can handle the birthmark.  I'm fine with that part.  But why do I have to struggle with migraines?" I ask in frustration.

"Why me?  Why, out of all the people with SWS that have seizures and other serious symptoms, do I only have migraines and glaucoma?  Why, for the most part, do I get to go out and live a life that many with SWS cannot?" I inquire out of curiosity and an odd sense of guilt.

Along with the occasional "why" questions, the fear questions are also triggered.

"Are seizures next?" I wonder.

"Will my migraines worsen?" I fear.

I've never been one to play the "if" game very often.  Not until this last year...And I don't like it.

Thinking back to my childhood, I don't remember being afraid of the dark.  I must have been afraid to some extent, though, as I remember falling asleep with the light on for many nights.  In fact, I think this was my first round playing the "if" game.

When I went to bed with the lights off, the room was dark...and in darkness, you can't see.  Where there use to be walls, there appears to be an endless amount of the unknown. What if I was thirsty, and couldn't find my water cup in the night?  What if I knocked my cup over during the search?  What if something scary lingered in my room, or in my closet?  There wasn't anything scary lingering around in the daytime or with the lights on, but what if that changed as the darkness crept in?

He is the Light in the darkness. (John 8:12)
And that's how my journey with SWS feels.  The light use to be on.  I knew I had an occasional migraine, I have glaucoma.  But when my symptoms began (and continue) to change, and the migraines started to come on a daily basis?   When I have a migraine for two weeks (or a month) straight?   The light is turned off and I can't see anything.  (Okay, strike that.  Some days it feels like I'm a house experiencing a power outage.)  I'm afraid of what might be lingering in the dark.  I'm afraid of the boogie man.

My life verse has been Jeremiah 29:11, "For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future."

Throughout different seasons in my life, I've been clinging to this verse - just like my recent journey with SWS.

I don't know what my future holds, but whatever it is, my God is "bigger than the boogie man.  He's bigger than Godzilla or the monsters on TV.  Oh, God is bigger than the boogie man, and He's watching out for you and me."  (Veggie Tales, anyone?)

He also has a plan for my life, even if I never understand the full plan...And even if I never find the answers to my big "why me" questions.

What "boogie man" has been creeping into your life lately?  Have you told God of your fears?  Like my, "Dear God: I don't like my brain" prayer, have you told Him that you just flat-out don't like whatever your boogie man represents?

Like many, I've had different versions of the boogie man in the past, and I know I'll have more to come in the future...But here's the thing. God is listening, and He's waiting.  Our God is a big God.  He is Mighty and He is Able.

Go to Him, tell Him about your boogie man.  He's waiting to turn the light on.

The Travelin' Chick,
Crystal

Wednesday, February 10, 2016

Be My Valentine (Giveaway)

It's almost Valentine's Day - and here's the deal.  I'm a single gal and I want YOU to be my Valentine.

You might be wondering, "How can I be your Valentine??"  Fair question.
"I love you" in American Sign Language.

Because Valentine's Day is the 14th of February, I'm going to list 14 items that I love - and I'm going to giveaway an item to TWO of my readers.  (Maybe you??)

Here are the rules to enter the giveaway:
  1. "Like" my Crystal Hodges page on Facebook.  (If you've already done this - thank you!  You can skip to rule #2 and #3.)
  2. Write on my Facebook post that links to this blog entry, and tell me which item you'd like to receive.  (If you're torn between a few of the items - don't fret.  Just list the items you're interested in...If you're picked, I will surprise you with one of them!)
  3. Share this blog post with your friends.
(Yes, I am including my international friends in this giveaway.)

On February 14th, 2016 (at 5 pm California time),  I'll pick two people.  Once I pick the two people, I'll announce their names on my Crystal Hodges Facebook page and I will then private message those selected, requesting their address.

This giveaway is my way to tell you guys thank you for your encouragement and support over the last few years, and to say, "I love you."  You guys rock and I am so thankful for each and every one of you.

Okay...So, what are 14 of my favorite things?
  1. Game: Catan Dice Game
  2. Wax Seals  (to seal the back of letters)
  3. CD: Be One by Natalie Grant
  4. Coffee Mug: May The Froth Be With You Star Wars Mug
  5. Movie: It Takes Two
  6. Game: Phase 10
  7. CD: RUN WILD. LIVE FREE. LOVE STRONG.  by King & Country
  8. Chipotle Burritos (I'd mail you a gift card)
  9. TV Show: Lois & Clark: The New Adventures of Superman: Season 1
  10. Children's Book: A Perfectly Messed-Up Story
  11. Children's Book: Beautiful Oops!
  12. Coloring Book: "Joy for the Journey"
  13. Book: Balancing It All: My Story of Juggling Priorities and Purpose by Candace Cameron Bure
  14. Book: Let's All Be Brave: Living Life with Everything You Have by Annie F. Downs
Can y'all tell I like to read??  I think it's safe to say that books, in general, are some of my favorite things.

Thanks again for being such great friends and for reading my blog.  I'm thankful for you, and I can't wait to celebrate Valentine's Day with two of you.  (Insert heart emoticons here.)

The Travelin' Chick,
Crystal

***Thanks to everyone who entered the giveaway!  As of Sunday, February 14th, 2016 - we have our winners.  If you weren't picked or you are seeing this at a much later date, don't worry!  I'll need a new valentine for 2017, and will be doing a similar giveaway next year as well.  Follow my page for updates and similar opportunities.***