It's just a birthmark!

Told ya.  Lots of medical stuff has
been taking place!  

During the last month, in the midst of all the holiday celebrations, I've had a lot of medical stuff going on. No worries - none of it has caught me by surprise. To summarize: in the last month I have had ankle surgery, a wisdom tooth and molar removed, and a laser treatment on my birthmark.

Whenever I am out and about, I just about always expect staring due to my birthmark. I expect weird questions and statements…and sometimes the occasional stupid remarks. The thing is though…When I go to a hospital or a dentist office, I don't really expect many ridiculous stories to unfold - at least not because of something hospital employees say. I guess I go into those buildings thinking that those who work there have a bit of knowledge that maybe the average Joe doesn't have. Maybe they don't know why my face is purple and pink, but I guess I've always assumed that they realize, as they work in their field, that there are many different kinds of people that don't necessarily look, or even act the same as others. I guess I also assume that they have trained themselves or have learned to have a professional filter somewhere between their brain and their vocal cords. But, I suppose that even people who work in the medical offices are also human…and can also give me a story to tell.

All of the stories I am about to tell you are true. And they've occurred within the last few months.

As I was preparing for my ankle surgery, I had to have a few podiatry appointments that included me going for x-rays of my ankle and foot. While waiting to be called back for the x-rays, a young lady (who works for the hospital) came in the waiting room, saw me, and asked, "Oh, are you wearing face paint or something?" I looked at her and said, "No...It's just a birthmark…"

This lady then became super embarrassed and flustered saying, "Oh, well, I just thought that since it's

My fun knee caddy/scooter. I've
even decorated it a little more since
this photo. 

time for Halloween and some people...well...you know...yeah...Sorry about that." Holding back my laughter, with a smile I said, "It's ok - don't worry about it!" She then walked out.

After I was called back for my x-rays, the same (embarrassed) lady ended up assisting the person I was with. The poor lady kept looking at the ground and wouldn't even make eye contact with me. She even asked the x-ray technician if she "really" needed her assistance. I could tell she felt bad. And awkward. I actually began to feel bad for her, but didn't know what to say to help her feel better about the situation...and it really did take all I had not to laugh - so it's probably better that I stayed silent!

Before I had my ankle surgery and before Christmas break began, my mom had me get the flu shot. Although I got the shot - I can't say that there wasn't a lot of protesting on my end…But eventually, I caved. Probably a good thing too, since I work at an elementary school and get germ-filled snot and slobber on me constantly…Just thinking about it makes me shiver.

Turns out, I'm allergic to the flu shot! I had a red and feverish spot on my arm that kept growing, even a few days after receiving the shot. Eventually it became the diameter size of a baseball and mom had me call the nurse hotline for advice. The nurse on the other of the line told me to go to the ER and that I should have called about it sooner.

As I am called form the ER's waiting room to see the triage nurse, the nurse asks me what I'm there for. I responded, "I'm having an allergic reaction or something to the flu shot." Looking at my face and with a monotoned, yet tired voice, she pointed and asked, "Is that the reaction right there??"…What????

I mean, I guess that's a valid question. I don't know. She wasn't the only nurse who had that thought that night. Valid or not…I just laughed in disbelief and a part of me wanted to respond, "Yeah…because we all get our flu shots in the face, right?" But I didn't. I just held onto my laughter until I left the room and I just cracked up once back in the waiting room with my mom.

About a week later I went to an oral surgeon for a pre-op appointment for the surgery to remove the two teeth removed. We introduced ourselves, and with a smile he looked at me and asked, "Oh - you have Sturge-Weber syndrome, don't you??" (Which, honestly…I'm not sure how to explain Sturge-Weber Syndrome. I have it in addition to the birthmark, but it is caused by the birthmark. I haven't learned much about it, but from my understandings…it's basically all the complications that a port-wine stain can cause, like my glaucoma. Except, I have it easy in comparison to a lot of people with the syndrome.) Looking at him amazed, I told him, "Yeah…I do."

The oral surgeon got really excited. Seriously. He was like a kid in a candy shop!! I think I made is day by just walking into his office. Before pulling down a book to read about my birthmark and the syndrome, he commented, "I don't know the last time I operated on someone with Sturge-Weber syndrome. Actually, I'm not sure if I ever have…at least with it on the gums. I wonder if you'll bleed more, since it's caused by extra blood vessels. I'm quite curious!"

Even the kiddo (my cousin) likes to take
a joy ride with the scooter/caddy! Who
can blame her?? 

Confused, I asked him how he knew about my birthmark. He told me he not only went to a school to learn about dentistry, but also went to medical school to learn more about the face so he could be better
prepared as an oral surgeon and dentist. I then told him the story of the ER nurse, telling him that I am impressed he knew so much when someone in a hospital setting knew so little. I hadn't expected a dentist to know anything about it…at all…but it really felt good to know that he made an effort to learn and still wanted to learn more.

I didn't go back to have the two teeth removed for a couple of weeks. Once I had them removed, he told me to make an appointment for the next week so he could make sure I'm doing okay and to remove the stitches.

I didn't make it a week. Within two days, I was back in their office. The stitches were driving me CRAZY. Being so far back in my mouth, it would literally feel like I was swallowing a piece of string.

Going back into the office, one of his assistants greeted me and took me back to a room. As I sat in a chair, the lady looked at my face and wide-eyed asked, "Oh my!! Is that from your surgery? Did the doctor do that to you?? You should of called us sooner!!" I then explained that, no, the doctor - her boss - did not do that to me. (Knowing I was having a laser treatment within the next 24 hours, I wanted to say, "You think I look bad now?? You should see me after my laser treatment tomorrow!!")

Unlike the ER nurse, I didn't find this situation to be funny. I actually felt the opposite. It frustrated me and I felt annoyed with the lady. I don't really know what the difference was. Maybe it's because I was still feeling crummy from having two teeth removed, in addition to having my cast as I heal from my ankle surgery. Maybe it's because I am tired of people who work around people in a medical type setting being totally clueless, and not knowing how to be a more classy type of clueless. I don't know. But just like my laughter with the ER nurse, I held in my annoyance with the oral surgeon's assistant.

The oral surgeon then came into the room and started checking things out. As he did so, his employee basically "told on" herself, recalling the conversation and comments she made…laughing while doing so. The oral surgeon's expression said it all - even before his words of apology for the lack of sensitivity of the lady who works for him. His face held a combination of frustration, embarrassment, and disbelief. After he apologized, the lady continued to laugh as she said, "yeah…Sorry about that!"

Yeah. Okay.

When I tell the stories that seem to continue to pile up, my sister always tells me that I need to have fun with people. She tells me I should unleash the sarcastic responses that come to my mind in response to certain questions or comments. Really, if you could see into my mind when situations arise, it can be a fun and hilarious comic strip playing out…but I always hold back. And sometimes my sarcastic responses come to my mind a little delayed.

Although I always expect people to say things, no question or comment is ever 100% the same. Somehow, I am usually caught off guard. I mean, even though the ER nurse's comment and the comment of the lady who works at the oral surgeon's office were both similar…They were not the same. At all…Each catching me by surprise!

Maybe being sarcastic in response isn't the right thing to do. Maybe it is. Or, maybe it doesn't matter…Maybe I should decide if I want to be sarcastic, depending on the person, the age, comment, attitude, etc, etc, as I can usually - and very quickly - weed out who is genuinely curious and kind verses those who are just plain ridiculously rude. I don't know.

My Deaf professors are always sharing their stories of the crazy things people tell them or ask them, along with their quick-witted sarcastic responses they give to people…and I love their stories! I love how fast they with their witty responses and often wish I could be the same way.

Maybe you work in a medical office or dentist's office. Possibly you're a doctor, nurse, or a receptionist with no medical training. If you work in either of these settings and your'e reading my blog, please take at least one thing from what you're reading.

Everyday I have to go out in public and deal with staring. Nearly everyday I am put into uncomfortable situations caused by the general, awkward public.

I get that you may not know why my face looks the way it does. I get that you may have questions about it. Truthfully, I don't expect you to know a thing about it or to go out and learn about it. But when I walk into a hospital or dentist office? I expect and hope for a decent sense of professionalism from you.

Hospitals or any kind of medical buildings *should* be a safety zone away from nonsense. Realistically, in these settings - nothing should be assumed. I mean, come on! I can't be the only "oddball" you've met.

Expect different people to walk to your doors at anytime!! Sure, those of us who are "different" may get stares and off-the-wall comments from other people in the waiting room, but more than likely - they don't work in a medical setting. Fair or not, I set the bar a little higher for the people who do.

And although it may not be in your job requirements, I hope that you have the previously mentioned filter between your brains and your vocal cords. Think before you speak! Treat me with respect. Treat me how you'd want to be treated if you were in a similar situation. Think through your words, vocal tones, and the looks you give others.

You can ask questions. Just be kind and please think about the way you phrase them.

The Travelin' Chick,
Crystal

PS: By the way - if any of you near me need a recommendation for a great oral surgeon, let me know! I really enjoyed the guy I was referred too. He was really kind and had a great sense of humor as he signed my cast while I was knocked out during the procedure, and told me he took a ride with my knee caddy I use to get around.

Birthmarks and Laser Treatments

Before going through a
treatment.  However, I'm wearing
make-up in this photo, so my
birthmark is lightened a good
 amount by make-up alone.

During spring break, I had a laser treatment on my birthmark.  Sparking conversations, many people have ask me questions such as, "What does the laser treatment do?  What does it feel like?  What is the purpose?"  Let me begin answering these questions with some quick background information.

First off, the type of birthmark that I have is called a "port wine stain".  There isn't really any rhyme or reason as to why I have it.  There's no genetic links, and it has nothing to do with my mother's pregnancy.  The only cause of my birthmark is, "just because it can exist, it does".  Due to an excess of blood vessels in my facial area, the blood vessels causes my skin tone to look a purplish type of color.  That being said, my birthmark goes much deeper than my skin.

If you were to look in my mouth, at my gums, in my ears, and in my nose, you can easily tell a color difference and where the birthmark starts and ends.  (Not that I go around looking up my nose or asking people, "Hey!!  You want to see the inside of my nose!??!?"...I am pretty sure that is socially unacceptable, and 100% socially awkward.  This is just an observation that doctors have made.)   The older I get, the darker it can get, and the texture of my skin is also at risk of changing (due to thickening of the blood vessels).  I also have to avoid getting too much sun without protection of sun screen, as that can damage the birthmark as well.  (Although, fun fact: I will add - when I get really, really cold...My mother and close friends can always tell.  My birthmark gets really dark, changing like a mood ring.  However, this change in color is only temporary.)

My birthmark goes all the way to my brain.  Occasionally I have to have MRIs done of my brain to make sure that none of the blood vessels have strayed into a more dangerous location.  When I was born, the doctor's had to watch me closely for my first 24 hours to make sure that the birthmark didn't cause any seizures.  If I didn't have any seizures in the first 24 hours, I would be okay.  I'm thankful that I didn't - as I am sure that would have greatly affected the way my life would play out.

Not only does my birthmark go brain deep, but it also affects my bone structure and density.  Even my teeth are affected by this.  It also adds to the lack of symmetry in my face - even more than the average person that doesn't have a birthmark.   The extra vessels make features expand a little more.  My lip is a perfect example of this, as the left upper lip is a little larger than the right upper lip.

Also, because it is more than skin deep, I also have had to deal with a disease called glaucoma in my left eye.  Glaucoma is an 80-year-old lady (or man) disease that I've had since I was about 8-years-old.  Due to all the blood pressure in my eye from all the blood vessels, I have to use eye drops twice a day, and see a doctor two times a year, just to make sure I don't go blind.  There is a surgery that can relieve glaucoma patients - but I don't know much about it.  Due to my type of glaucoma and the reasons that I have it, if the doctor makes one little wrong move - I would go instantly blind in my eye.  We've decided it's not worth the risk and have not asked for further information.

Pretty much, my birthmark is more than just something that alters the skin tone on my face.  Due to the color alteration, I sometimes have laser treatments. 

The numbing cream.  I have to
wear this for an hour before
the treatment.  It also has to
be applied on super thick.  It was
like icing a cake. ;-)

Okay...What is a laser treatment, and what does it do?  What is the goal?

The overall goal of the laser treatments is to lighten my birthmark. It's recommended that I have them every two months for the treatments to work at their best.  When I have the treatments, heat is sent from the laser, basically heating up the blood vessels.  When they get hot, they shrink - or burst.   When they shrink, the color lightens and other risk factors are lessened - such as the texture of my skin changing.

If I don't have the treatments, my birthmark will get darker as I age.  The blood vessels will get bigger, causing the darker color - and for my birthmark colored skin to become lumpy and a pebble-like texture.  By having the treatments, I am lessening my risks of it changing the color and texture - which is my main purpose of having the treatments.  (As really, I don't feel the need to hide.  Making it lighter is more than just about the color.)

After the treatment my face is extra purple for about a week - varying after each treatment.  It's swollen and painful, and I can't scratch or rub my face.  For the first few days I can't wear makeup either.  As long as the dark and purple color is around, I can feel heat radiating through my skin.  The lighter the purple gets, the less pain and heat that I feel.  Once the extra purple color disappears and my birthmark returns to normal color, my birthmark will lighten even more.

How do the treatments feel?  Afterwards it reminds me of a horrible sunburn.  Imagine your worst sunburn - and there you go.  That's the best way I can describe it.  During the treatment?  Well, the doctors like to describe it as a rubber band shooting the face.  I've decided that once they have a birthmark on their face and go through the treatments themselves, then they can describe how it feels.  The way I've decided I like to describe it is - it's like eating a spicy dish.

When you first start eating, your mouth is okay.  (In laser terms, the numbing cream I wear for an hour before does it's job to ease the pain to where the laser is barely felt.)  The more you eat, the more it stings - or feels like a rubber band. (Numbing cream starts wearing off the more laser pulses they send to my face.)  Eventually, it the food gets hot, and the spice intensifies.  (The pain gets even stronger - more than feeling like a rubber band.)  And occasionally, you hit a  jalapeño - or other spice/pepper - and your senses are sent through the roof with spice. (I would consider theses to be the really tender and sensitive areas on the face, such as the lip and nose.  I hardly let them treat these areas because of the intense pain.)

When I was a young child and toddler I use to have laser treatments on my face on a more regular basis.  To be honest, I'm not really sure how many I've had in my lifetime.  I would guess more than 25, more likely more than 30.

Since I was a child, they would let me sleep through the treatments by the use of anesthesia.  Once I hit the age of 11, that was advantage was taken away.  I was now "old enough" to stay awake during the treatment - only needing an hour of numbing cream before the procedure.

I went through one treatment awake at 11-years-old before I decided to stop.  Staying awake wasn't worth it to me.  The pain wasn't worth the outcome, as the laser machine they had wasn't making much of a difference.  The pain of the treatment was too overwhelming for me as well - so I decided to stop.  I decided that with the pain combined with an outcome that didn't show any differences - if I continued, I would be lettings stupid happen all over again.  My mom let me make my own decision about stopping, and I was glad.  I guess her theory is - it's my face, my body, the treatments aren't mandatory or needed, and I'm the one who has to go through it - not her.  I'm thankful for letting me choose for myself.

It wasn't until 2010 (at the age of 18) when I decided to try again and had a better outcome in comparison to when I was 11-years-old.  (Every three years, the hospital upgrades their machines as new medical advancements take place, so the machine was advanced at least 2-3 times since my last visit.)

My birthmark about an hour after
a treatment.  Please excuse the greasy
looking hair.  After the treatment,
Vaseline is applied to my face
to help prevent blistering and
other possible reactions from the treatment.
I promise I did shower that morning. :-)

In 2011, I planned to have another treatment and even blogged about it before I went, but we had to cancel at last minute.  Then, during spring break of 2012, I decided to attempt at the treatments again.  This time we were able to treat more than 80% of my birthmark, excluding my eye, nose, and lip area.  (Again, those areas are super sensitive for me.)  It took 200 laser pulses to get that much done.  It's been a few weeks since the treatment, and I've already noticed a difference.  I have another appointment for another treatment set up for May.

If you ever have questions about my birthmark or the treatments - please feel free to ask!  I am okay with people asking questions and they don't make me uncomfortable if they are asked in genuine curiousity and kindness.  In a way, I consider it a type of honor to be able to help others have a better understanding of this difference.  After all, you know my birthmark is there and I definitely know it's there...So why avoid talking about it if someone has a question or curiosity?   If you don't ask, it doesn't make my birthmark disappear.  It also doesn't make your questions go away either.  I would rather you know and have an understanding - so again, please ask if you want to know more!

Oh - and just because I am trying to lighten my birthmark - please don't think that I would change who I am today or that I am doing it due to any personal insecurities.  That's not the case.  Often I walk around with confidence in who I am, regardless of my birthmark. 

Just as any other female, I've had my ups and downs when it comes to my personal appearance.  However, that's normal for any female.  I just have a birthmark added to those ups and downs - but that's my normal.   Yes, I've wondered what it's like to have a 'normal' looking face.  But how many brunettes have wondered what it would be like to go blonde?  Rumor has it, it's just easier to dye your hair a different color than it is to change your skin tone.

Because of my birthmark, I've had to overcome a lot of different unique situations.  I've had to smile at the slightly rude person who has been awkwardly staring at me for five minutes.  I have also walked in stores or on a college campus, hearing comments and questions being spoken about me - but not to me.  (In a sense, sometimes it feels like I, as a person, am invisible in these situations - except for my half purple face...with people forgetting that I do have eyes that see them stare, I do have ears that hear them talk, and that I do have a brain that understands their reaction.)

I find it to be a joy to have the opportunities to share about physical differences that most people are not use to.  And sometimes, I even forget that I look different than most people…Until certain things are said or when people stare long enough.

My family and I have received comments such as, “How did you burn your baby??”  or  the most common question from adults - “What is wrong with your face?”  This is a prime example of how you shouldn't ask people questions if you're curious about something so personal.  This style doesn't come across as genuine, curious, or kind.  It comes across as mean, rude, nosey - and sometimes hurtful.  Nothing is wrong with my face.  Usually I try to be kind and ignore the tone of the question.  But, as I am human, and depending on my mood - sometimes I have to bite back sarcastic responses such as, "Nothing is wrong with my face.  What's wrong with your attitude and manners??"  (Sometimes I really need to work on my sarcastic internal and silent responses.)

People have even argued with me, telling it it’s not a birthmark, and that I have something like skin cancer or something contagious.  On the opposite end, I’ve had a woman in a clothing store tell me that she was jealous of me and that she wished she had a birthmark covering her face too.

While usually comments and stares don’t knock me down for long, I do have my weaker moments in liking my physical appearance - just like other people have.  Over the years I’ve had to overcome this obstacle when it arises, and even today it can sometimes be a daily practice.  For example: When an attractively handsome man stares at me.  Is he staring at me because he thinks I’m pretty, or is he victimizing me with his staring? 

Those feelings of insecurities don't usually stick around long, though.  As, again, there is a certain kind of joy that comes from being different from the world.  You see life differently and there are a lot of chances to teach others that’s okay to stand out a little.  It’s okay to look different!

I also know that my extra confidence comes from how I was raised by my parents.  When people would stare, like I mentioned above, my mom is the one who taught me to me to smile at them.  Maybe the staring person is having a bad day and needed a smile to lift their spirits.

My parents have also taught me to have a sense of humor.  Once I was asked by a man, “What’s wrong with your face?”  I told him, “It’s just a birthmark.”  He responded, “Oh – I thought you were beat by your husband or something!”  While my friends who were with me at the time got upset and offended over the comment, I just laughed.  For the first time in my life, I realized that I was old enough to be married if I wanted to be.  I didn’t feel offended or angry.  It was a moment of realization of the fact that I was old enough to marry!  I was an adult! 

Despite all the things I've had to over come in those areas, I also have unique stories that no one else has.  I've developed a sense of humor, learning to laugh at the awkward situations that I am faced with on a daily basis.  I have the blessing of having the ability to teach others that's okay not to fit in the mold that the world and society has given us.

It's a beautiful opportunity to be different.

The Travelin' Chick,

Crystal

PS: Sorry if any of what I've written today is a little repetitive of any posts in the past.  (Although, I've only posted about this topic twice, so hopefully there wasn't anything found to be repetitive!)

***Update September 19, 2013***
In May, the cause for port wine stains was found!  It's due to a rare gene mutation  - but is not the fault of the mother or genes of the father.  For more information, click here!

What Would You Do?

When you click on the video, please excuse the language of the title of the clip...But at the same time, understand the reality of questions and statements people often get for looking different. This video is a reality of my life.

The other day I was sitting in my school cafeteria.  I was sitting at a table alone, but there was a lady sitting across from me at another table.  She was probably about mid-40's.  Every now and then I would glance up from my lunch and textbook and kept noticing she was staring at me.  This happens to me a lot, yet still can feel uncomfortable at times.  This was one of those awkward times.  (Usually I just stare back smiling, making the original starer feel more awkward than me.)

Whenever I glanced up, as she was staring at me she was also eating her lunch.  I guess at some point she got more interested in staring at my face than paying attention to her lunch, as at some point had a big blob of mayonnaise (or something) on her face...but she never seemed to notice.  Five minutes later, I glanced up at the staring lady and saw she still had the blob of food on her face.

The kind part of me thought, "I should tell her she has food on her face..."  The other sarcastic part wanted to go to her and say, "Oh my!!!!  What is that on your face?!?!!?!!?"  Luckily she wiped her face about 15 minutes later, so I didn't have to worry which comment would come out (whether it came out sarcastic or kind...) had I approached her about the slowly growing mass on her cheek.

This is one of many stories I could have to tell.  As you watch this video ask yourself, "What would I do?"  In addition, ask yourself, "If I see someone who looks 'different' in the store or college cafeteria, how would I handle the situation?"  From someone who does have a different facial feature, please know, it is okay to ask.  Just ask in kindness and genuine curiosity.  In my personal opinion, I would rather people ask me about it than be curious for the rest of their lives, staring, pointing, or asking their friends, "Did you see that girl with the purple face?  What do you think that was?"  (And I do hear these comments and see people staring.  Even if people think they're being sly about it, they are more obvious than they think.)  I'm always happy and honored to have the chance to help others learn something new.  :-)

To stare, or not to stare??...That is the question!

Sincerely,
The Travelin' Chick

PS: Please note that I wrote this from a humorous perspective and am not at all trying to sound rude.  After 21 years of birthmark life experiences, you have a lot of stories and fun with some situations.