Sunday, March 24, 2013

Grateful Sunday

Let's be grateful today for those who share joy with others and let us share joy with those we meet.




Thursday, March 21, 2013

Tips & Tricks for Scars


Today I wanted to share with you some information about post-op scarring.  I tend to heal slowly (from all “owies,” not just surgery) and scar fairly severely (i.e., granulation tissue and keloids). Knowing that, I have been conducting my own experiments in scar mitigation and I am here to report my findings. Fortunately, these tips cross all scar boundaries. I started, of course, treating my post-surgery scars, but I've found that these tips work equally well for skinned knees, vicious bug bites, and even zits!  

SCAR CARE TIPS
  1.  As soon as you are cleared by your medical professional to wash your wound or incision, keep it very clean. Never rub or scrub the wound with a rag or loofah, but rather lather just your hands with a mild liquid soap and warm water to "flush" the area. Many times, this flushing is enough cleaning, but if you have gravel, dirt, or sweat in the wound at any time, you can use gentle, circular motions with your fingertips to clean your wound. Be especially careful when scabs start to form -- you want to let them soften and fall off naturally. Do not, I repeat, do not pick off your scabs! Bottom Line: Follow Drs. orders, but keep that sucker clean!
  2. Use Neosporin on large wounds for 3-5 days (for smaller wounds, like zits and tiny incisions, 1-2 days will suffice). With clean fingers or a cotton swab, dab a smooth layer of Neosporin over your wound and if all possible, let it absorb into your skin in the open air for 15-20 minutes before covering it with a bandage or putting on clothing.
  3. Use Mederma immediately (just after the 3-5 days of Neosporin if you have a large wound). I could seriously write an ode of joy to Mederma praising it for its abilities grow skin cells ... okay, so maybe it’s not actually growing cells, but it works! Mederma is always in my makeup bag and it is a part of my skincare regimen each morning and night. For best results, you need to apply Mederma several times a day, so consider buying two tubes and keep one in your desk or purse and one at home; but at the very least, apply it in the morning and at night. I have also had great results in trying to fade old scars. Old scar therapy takes considerably more time (several months with repeated use), but if you're concerned about scar appearance, then it is worth it.
  4. You'll probably hear me talking more in the future about going natural and organic (I am slowly transitioning my food, health, beauty and household products to natural and organic when possible) and if you've already made that lifestyle change, KUDOS to you! So with that concern in mind, for the all-natural types, I recommend this product: The Left Hand Soap Co. Skin Salve. This soothing salve is handmade without any petroleum products in sustainable, craft batches, so it's better for you and the environment. I use TLH salves for maintenance of minor scars after Neosporin and in addition Mederma, but I'm confident you could use it in place of those two products and experience excellent results. It keeps the skin moist, which is the main premise of healing wounds without scarring. 
  5. Let the affected area breathe when possible. For some post-op care, you'll have to keep it bandaged, wrapped, or covered, but sans any specific instructions, think breathable fabrics and less is more. You’ll want to keep the skin moist and germs out, but after a few days, Band-Aids seem to keep the wound “mushy,” so I generally only use them for a couple of days. Moisture is still important, even after the wound has dried, so keep a medicated moisturizer on the affected area for several weeks.
  6. Massage. A CCA mom gave me a tip prior to my last surgery and recommended cross fiber massage as a post-op treatment. She said her son had benefitted from it and suggested I try it. Wow, was she right! I was skeptical at first, but the healing hands of my massage professional made a real difference in my healing process. In the therapy, we first focused on draining lymph from my face and jawline, which tends to accumulate, causing a puffy, red look and the feeling of warm inflammation in my face. After she drained the lymph, we worked on loosening up the scar tissue for about six months. I experienced very positive results, which I will be sharing in an upcoming blog post about medical massage ... so stay tuned!

Hopefully these tips about scar care will help you fade old scars. But one of the most important things to remember is that scars tell a story. I think scars are intriguing and beautiful. So don’t hide your scars – celebrate the person you are and the struggles you've overcome. And remember, scars are cool. If you don’t believe me, just ask these three!

"It matters not what someone is born, but what they grow to be."
J.K. Rowling, Author, Harry Potter and the Goblet of Fire
"I love it because it makes me a person who has an interesting past, 
and it reminds me that I can survive any pain." 
Padma Lakshmi, Top Chef Host & Model
Padma has a seven inch scar on her arm from a childhood car accident 
and discussed it in the May 2009 issue of Allure.
"I believe that in all forms of art there has to have been some initial adversity: 
that is what makes art, as far as I'm concerned," he said. 
"And it's not something you outlive: once you experience it, it's always with you. 
It forms part of your makeup; probably it's the reason for your makeup."
Seal, Musician and Celebrity
Seal has often discussed the scars that showed up on his face when he was 23,
an effect of discoid lupus erythematosus.


--Erica


Sunday, March 17, 2013

Grateful Sunday


This Sunday I am grateful for my 23 year affiliation with CCA...hard to believe these years have flown by so quickly. I first heard about CCA from a Dear Abby column back in 1988...(little did I know at that time how life changing the information would be for me).   CCA has helped me in many ways throughout this time...including much needed moral support ...which kept me going through some of the hard times....and celebrated with me during the fun times.   So thank you CCA and I look forward to many more years of association!


Stephen

Friday, March 15, 2013

Race Update

Happy Friday, everyone!

As promised, here are several pictures from the half marathon I ran. I was very happy with my time, overall, even though it was very lopsided: I made time by killing the first half with a personal record pace, but then at Mile 8 it got really rough. I managed to trot across the finish line with a time of 1:49:13. Hooray!

Thank you to everyone who supported me. My Facebook wall was nothing but love for two days straight! What a wonderful experience.

Ahh... sunrise in Seaside. This is what the morning looked like. It was sunny, but only 32°. Brr!
The starting line was this adorable little post office in the center of town.

And we're off. You can't see me in this picture, but I'm in that crazy mob (towards the front, left side)!
The race course was lovely and almost peaceful.
I made it! Crossing the finish line.
Thank you for your support, everyone! 

Thanks to Endurance Imaging who shot these excellent race photos.

Thursday, March 14, 2013

Don't Judge a Book by Its Cover

The following post is reprinted with permission from Joe Brooks, a student at the University of Mary Washington.  He wrote this essay for his sociology class.  We thought is was fantastic and wanted to share it with our readers!

One thing I learned early in life and strongly believe in is that you should not look at a person and judge them based on what you see before you get a chance to know them. I embrace this belief because I was born with a rare syndrome called Oto-Palatal-Digital Syndrome (OPD) type II, and it gives me a unique appearance mostly in my face, hands, and feet, and it also affects my speech, vision, spine, and hearing. Everyone looks different, but just because some people look more different than others, people start to judge them. I believe this is not right and that all people should be accepted for who they are and not what they look like.

Growing up with OPD, I have had to deal with people staring at me and teasing me just because of the way I look. I had kids call me ugly, and one time when I was four I had a boy tell me he hated me for no reason. But my parents taught me that I can’t let that stop me from enjoying life. I have made some good friends who liked me as a person and didn’t care what I looked like. All my friends know I am nice and I have a great sense of humor. I love to play percussion and I am obsessed with aviation and Pok√©mon.

I would say this belief is not part of the US dominant culture because there are so many people who don’t know how to talk to someone with any kind of difference, be it race, manner of dress, or disabilities. On the whole it has taken many years to have society accept people with different colors of skin, and society is still having difficulty accepting people with disabilities. People with disabilities are not that much different than other people, they just have to live their life their way, finding ways to compensate. We still want to have fun and make friends, just like everyone else, and we still love to learn. Some people don’t seem to get that. This belief is more specific to my family and friends because they know me and know not to judge me by my looks. I also have a specific group of friends who share this same belief because they also go through what I go through.

This great organization supports families who have a family member with a craniofacial difference, like I have. The group is called Children’s Craniofacial Association (CCA) and they provide emotional and financial support for children and adults and their families affected by craniofacial differences. I really enjoy being friends with people from CCA because they know what I’ve been through, physically and emotionally, because they have been through it too.

CCA’s motto is “Beyond the Face is a Heart” which basically means that it doesn’t matter what someone looks like; they still have feelings just like everyone else. But because of the way our faces are, people tend to look at us and treat us differently. We often get stared at. One great thing that CCA does is hold a retreat every year for us to meet and have fun with others just like us, and know that we are not alone. When you are at the retreat you don’t have to worry about being stared at because everyone knows that staring is rude and they know why you look the way you do.

In conclusion, I strongly believe that you should not be judged based on looks. Everyone has feelings and everyone has things they like and dislike. But one thing that everyone wants is to be accepted, and that tends to be difficult for people who have any kind of difference. But it doesn’t have to be. It’s nice to know that there are good people in the world that do see beyond the differences, and if we had more people like them, the world would be a better place. Don’t judge a book by its cover; you might miss out on an amazing story.

Joe

Tuesday, March 12, 2013

Comfort Zone


We all have a ‘comfort zone’, a place where we feel secure, at ease, with no stress. Our comfort zone feels safe because it’s familiar; it’s what we’re used to. It’s reliable as well, because we know that the comfort zone never fails to make us feel better.

I get to enter my comfort zone once a year, at the end of June. What else could I be talking about but the annual CCA Cher’s Family Retreat? This is the place where I feel the safest, most loved and most accepted. These feelings will never change, no matter how old I get.

The comfort sets in when I arrive at the hotel where the retreat is held. I immediately become on the ‘lookout’ for other CCA families. This year, my mom and I landed in Arizona early, so I was on the ‘lookout’ for a few days! The excitement rises when I spot the first CCA family; I get the biggest smile on my face and say “look Mom! There’s so and so!” For some, it’s only been a year since we last saw each other, but since not everyone attends every retreat, then it can become years before we see each other again.

We all have that desire to ‘fit in’ and to be accepted. We strive to find our place in the world. I am so thankful to have that; a place where I feel confident and not scared to be myself. Having been born with a craniofacial syndrome, I constantly have to deal with judgement and stares from the public. It’s not easy to fit into a world where society is so focused on ‘outer beauty’ and having the ‘perfect image’. This is one of the reasons why the retreat is my comfort zone. For a few days, I have a chance to get away from the negativity and just feel comfortable in my own skin. When I’m with my CCA family, I just block out everyone else. For instance, in Arizona, when we were hanging out by the pool, I did not even look up once to see if anyone was staring at us, because frankly, I didn’t care. The retreat is my escape. I get to hang out with friends and just have fun, without worrying about anything else. 

This year was deemed as one of the BEST retreats ever and I could see why. Even on the first night, where we have an ‘ice cream social’, you could feel all the positive energy in the air. Everyone was talking up a storm, laughing and joining in on the activities. If an ‘outsider’ came in and saw us, they’d look and think that we’ve all been close friends for years, but in reality, we may have only just met for the first time! No matter what, we welcome everyone with open arms. I know how overwhelming it can be at the first retreat, therefore I always try my best to make new families feel at ease. 

Not only is this an annual retreat that happens every year, but also; a family reunion! I can hear people saying “but wait, they’re not your ‘actual’ family, so you can’t say it’s a family reunion". That’s where they’re wrong. I strongly believe that family does not only include ‘blood relatives’. There’s so much more to it than that. A family is based on unconditional love, support, and encouragement -which is exactly what I feel when I’m surrounded by my CCA friends. Every year at the dinner and dance, there’s always one very important song that plays; ‘We are family’, which couldn’t be more accurate. After studying Psychology of Music last semester, I could feel the power of this song bringing everyone together. We all sing it, loud and proud “we are family!”

The ‘dinner and dance’ has always been my favourite part of the retreat. We all have the biggest smiles on our faces while dancing away, without a care in the world. Sometimes I wish I could pause the time, so the night could last longer. This year, they played the song “Born this way” by Lady Gaga. I was with my friend Casey when it started playing and we instantly got on the dance floor. For anyone, this song has a lot of meaning, but in the CCA world... this song means everything to us. It’s the phrase we have used countless times growing up, answering to questions from strangers “I was born this way”. Therefore, I don’t have to tell you how amazing it felt to dance to that song at the retreat. Being with my CCA friends and singing “born this way” is a memory I’ll always cherish.

Once we’re in our ‘comfort zone’, it can be difficult to get out of it, which is why the ‘goodbye breakfast’ is always the most dreaded part of the retreat. No one likes goodbyes. Even though we’ve only spent a few days together, we have already become so emotionally attached. We form an unbreakable bond. The sense of security from this comfort zone is so powerful that when I got to the airport to return back home, I immediately felt out of my element. When I was waiting in line and noticed people staring at me, part of me wanted to jump back in my comfort zone. I actually found myself looking around, hoping to see a CCA friend nearby.

At the retreat this year, a very wise friend said “this is our normal”, meaning that everything we go through, is just a part of OUR life. All of our CCA families have been through similar surgeries and we’ve all faced criticism and judgement from the outside world. Does that mean our lives are worse? No. We may have to face difficult challenges, but that’s only one part of our lives. The other part is filled with love, happiness and moments of incredible achievement. What makes our CCA bond so strong is that we can all relate to each other. We don’t have to explain how we feel because the person we’re talking to has gone through the exact same thing. The retreat gives us a chance to all be ‘normal’ together, a chance to meet new people without the fear of rejection.  

Even though I can only physically be in this comfort zone once a year, I can feel it emotionally when I communicate with others online. The comfort zone doesn’t disappear just because the retreat ends. I have to take those feelings that I get during the retreat and keep them with me as I go off into the real world. The confidence that I feel when I’m surrounded by my CCA family, should also be there when I’m surrounded by strangers. It is easier said than done, but by taking one step at a time, I know I can gain that confidence to face the world and not feel afraid to be myself.

“Beyond the face is a heart” – Children’s Craniofacial Association

- Sabrina

Sunday, March 10, 2013

Grateful Sunday




I'm grateful for spring runs... ahh! And it's never to early to be grateful for football season, is it? ;)
-Erica


Thursday, March 7, 2013

Never Give Up Hope

"Never Give Up Hope!" Sometimes the solution is completely unexpected in appearance, and may be difficult to understand, but is there nevertheless.

In the summer of 1984, I attended a lecture in Salt Lake City where the speaker said if he could recommend only one book it would be Man's Search For Meaning by Viktor Frankl. I was 15 at the time and loved to read, so I went right out and bought it. I still have this book and still read in it for inspiration. One of the main themes of Frankl is that Man is always free to take a stand against conditions even if he cannot change them, i.e., attitude is always freely chosen.

Here is a good example that applies to people with craniofacial conditions: Crouzon's Syndrome is the same physical condition, but the way in which people cope with having Crouzon's is very different. I really like this phrase and try to remember it each day ... Here it is again : Attitude is always freely chosen. This changes throughout life as well. Crouzon's for me as a child was much different than Crouzon's as an adult. Life experience has changed my view and feelings about having the syndrome.

My grandmother used to always say that one of the secrets to having a happy life is to always have something to look forward to. Frankl says that life is like a movie in that many of the pieces make themselves known later in life and therefore in order to know what "such and such" means we must wait for the outcome of our life. This gives me hope and a sense of anticipation as to what else will occur in my future which will help me to understand the overall meaning of my life.

Instilling meaning into life situations makes the difference as to whether or not life is bearable. Frankl quotes the philosopher, Nietchze, who says, "He who has a why can endure any how." One insight I have gained is that sometimes the meaning is hidden until something else in life comes along.

-Stephen

Tuesday, March 5, 2013

Imagine a world where everyone can read...

CCA is participating in "World Read Aloud Day" on March 6, 2013 by sharing excerpts from our favorite book, Wonder by R.J. Palacio. To find out more about this event, visit LitWorld's website.  We hope you enjoy the Vlog post below (be sure to watch the entire video for some good laughs!)


This video is also available on YouTube


Sunday, March 3, 2013

Life Lessons from Great Literature

This Sunday I'm grateful for all the teachers who have been sharing the story of Wonder with their students.  What a positive "meditation in kindness" this book is leaving with both kids and adults around the country!

When Peter was born twelve years ago, I would sit by his bed in NICU and worry not only about his critical and complex medical issues.  I was also anxious about how others would treat him, if he would have friends, if he would be bullied at school, and how he would deal with all the stares and whispers that were sure to become part of his daily existence.  How amazing that around the same time of Peter's birth, a little girl with a facial difference made a lifelong impression on R.J. Palacio.  If I had known that such a powerful message of acceptance would someday be written in the form of Wonder, my heart would've perhaps been just a little lighter.

I've always been a self-proclaimed bookworm, so the fact that this campaign to "Choose Kind" comes in the form of great literature is absolutely perfect.  Peter, incidentally, also inherited the bookworm gene.  I love what David Etkin, teacher and founder of #WONDERschools, wrote in his review of the book.


Thank  you R.J. Palacio for choosing to write this beautiful, funny, touching, and powerful story.  It is, indeed, life changing.

P.S. Visit the blog on Wednesday, March 6th, for a special message from Peter & Jacob in honor of "World Read Aloud Day"