BFRB Awareness Week is October 1-7th!



Trich Awareness is coming! This year we're trying to get as many people as we can to wear BLUE and GREEN on October 7th. 

 

All you have to do is:

• Search my event on facebook:  Trich Awareness Day - Wear Blue & Green
• Click on JOIN
• Wear blue and green on October 7th. 
• Share this event on facebook and invite all of your friends. 
• Take pictures of yourself and others wearing blue and green and post them on our wall!

 

 

Picture Day!

Today was picture day at school. I remember how hard it was last year, as I tried to paint some eyebrows on my little girl.  This year we didn't have to do that!  I'm so proud of how far she's come in the past year!  She is so awesome :)

Let it Go!!

Are you getting sick of that song yet??  We have listened to it so many times now that we are now listening to it in Spanish and Japanese just to keep things fresh!

So it's been over a year since Trich first appeared in our lives.  What began as confusion and frustration, is now hope and acceptance.  A huge step for me personally was to "let it go".  Now, I hardly notice my daughter's missing lashes.  I don't get as frustrated or angry with her when I catch her doing it. Sometimes we even joke about it and try to make light of the situation.  The other day I was singing to her "Let em Growww" and she rolled her eyes at me as if to say "mom you're such a dork". But at the end of the day, it's her face, it's her hair, and I can't control trich any more than she can.  It feels good to let it go.  I'm not saying we are giving up on helping her; we're just not letting it consume our lives.
Over the past year we have learned a lot.  We are doing the best we can between supplements and diet modification.  We have had some success managing the severity of her pulling.  She has full brows again and hasn't pulled them in months!  We have also accepted the fact that trich is here, and there are good days and bad days.  We have educated ourselves, our friends, and our family.  My little girl can now pronounce the word Trichotillomania and tell you what it means, almost with pride.  She also gave purple awareness bracelets to her teacher and her therapist, and isn't afraid to talk about.  She really owns it, and I'm proud of her for the progress she's made!

Severson Sisters

Not too long ago my little girl asked me not to pull her hair back
into a pony tail because she didn't want anyone to see her bald
spots in her eyebrows. It really hurt my heart to know that she was
worrying about this or even cared what other people thought. I
asked her if anyone ever said anything about her eyebrows and she
said no. I found it really hard to believe something or somebody
didn't provoke her concerns, but granted her request to leave the
hair down.
This led me to think about what I am going to do the day that
somebody actually DOES notice, and says something to her. I'd like
to think I have her prepared to tell people what her disorder is.
She knows how to pronounce the word "Trichotillomania" and she can
tell you exactly what it is. But is she prepared for any harsh
words that may come her way? Am I?
That's when I remembered Severson Sisters...
Founder Carrie Severson had been a High School friend of mine and I
heard about her nonprofit a while ago but didn't know how it would
apply to my life, until now.


Severson Sisters is a non-profit organization that empowers females
in the world. We provide programs and services that help girls
‘Connect to their Inner Super Girl.’ Our mission is to inspire
Super Girls of all ages to live their life as their authentic,
awesome, super self. Severson Sisters plays a role in the lives of
Super Girls to help them become confident Super Women who will lead
their communities. We do this by offering a creative and supportive
program called the Super Girl Program.
SeversonSisters.org
 

I realized I would like to become a part of this organization not
only for my daughter, but for other young girls who have ever been
bullied because of Trich. I am currently raising the funds to become
a certified facilitator. If you get the chance, stop by and donate!

http://www.gofundme.com/83g3zw


Thank you all so much!!!

When Everything Happens for a Reason...

A lot has transpired since I last wrote.... Good, Bad, Ugly and GREAT!
The past few years have been especially hard for me, trying to balance a full time job with family life.  My career had been less than satisfactory and was heading nowhere, leaving me uninspired and bored.  I have looked here and there for a new job but there hasn't been much out there in my field.  I didn't want to rock the boat too much, I had been there for 10 years, I had a steady paycheck, I was comfortable.
Not long ago a job opportunity was presented to me.  It wasn't something I would normally go for, and didn't really think much of it at first.  I did a couple phone interviews just to keep my options open, and eventually landed an interview, and quickly became excited at this new opportunity.  My interview was scheduled for a Friday afternoon.
That Friday came and I went to work as usual.  I've been experiencing a bit of anxiety at work, feeling as if my days were numbered.  That morning I got laid off.  I wasn't particularly shocked, and almost felt relieved.  I had a couple hours to clean out my cube, pull my shit together and get to my interview.
I didn't have time to even process what had just happened, and went in pretending like it was tomorrow's news.
I ended up having the interview of my life and met with some awesome new people with a great company!  As I was leaving they told me they wanted to present an offer to me by that Monday.  I couldn't have asked God for more at that moment!  Who gets laid off and hired all in the same day???
Long story short, I accepted the position!  I took a few weeks off to spend with the kids before starting... we went to spring training games, played outside, went to the movies and I snuggled them a lot!  It was so refreshing and relaxing!
I miss their little faces but I've started my new job this week.  It has been a really good change for me and I have a lot to learn, but I'm confident it will all come with time.  It's a completely different industry than what I'm used to, but uses very similar technology than what I am familiar with.
I'm really excited because I have been enrolling us on our new health insurance and it's going to cover WAY more than my previous plan.  I've switched the entire family to the new plan and we will now be able to take little girl to all her appointments without paying an arm and a leg!  This has been a HUGE relief for me, I finally feel like I can take care of my family.  Her therapist and her ND will now be covered.  Even though we have backed away from the consuming Dr's appointments, I'd really like to get her diet on the right track and eliminate the guesswork.
I know with all this new coverage I will have a lot more to report, I promise I will share what I learn!

A Few Facts About Trich

The biggest reason I started this blog was to spread awareness and educate people about trich.
Everyone is going to have their own opinion on how to handle it, and every case is different.
If you are a parent of someone with trich, I am sure you are like me, reading every book and article about it, trying to figure out what will work for you and your child.  Here is what I have learned so far.

• What works for one person may not work for another.
• There can be many "types" of trich with multiple levels of severity.
• There is no "cure" for trich, and unfortunatley, there is no magic pill that will make it disappear.
• Although antidepressants and anti-anxiety meds have helped some, most experiences that I have read from the parents group that have joined online say that it has worsened their child's trich and they ended up taking them off.
• This leads me to my next point.  I will NOT medicate my daughter for trich.  She is only 5.  She has been seeing a therapist who has experience with trich, and she tells us that she does not need medication.  (Which I fully agree)  She reports that she is a very happy, confident and outgoing girl, who apparently loves anything shiny and sparkly!   
• GAPS (Gut and Psychology Syndrome)  If you haven't read about it yet, I highly recommend you educate yourself on how your digestive system affects your brain.  Although I would love to try this diet out with my daughter, she is WAY too young to understand why she can't eat normal food for 6 months and beyond! 
• That being said, my next point is diet.  I'm sure you have read about how bad processed foods, GMOs, high fructose corn syrup and hydrogenated oils, ect. are for you.  Yes we have heard about how our bodies cannot process these things, but did you know this not only affects our weight but our brains as well?
• Food allergy.   Allergies to food can affect the body not only physically but mentally.  We found out little girl has a dairy allergy.  Although it has never really made her physically ill, it could have affected her gut enough to eventually cause an imbalance within her brain.
• There are certain "triggers" for trich.  The most popular misconception is that the person suffering from trich has high anxiety.  THIS IS NOT TRUE!  My daughter does not have anxiety.  We actually pinpointed some of her triggers and her favorite time to pull is when something exciting is going on.  Her birthday, holidays, even going to a friend's house creates such an excitement in her that she can't settle down, so she pulls to relax. 
• You don't "grow out of" trich.  She will most likely deal with this for the rest of her life.  The only thing we can do as parents is give her the tools to manage it the best she can.  The most encouraging thing I ever heard was from a friend who told me how she pulled out her brows when she was little but never did it again after that.  But she admitted she still has the urge to pull to this day.  I believe after all the personal experiences I've read from, that the "urge" never really goes away, but you find ways to overcome it. 
• Exercise!  Exercise!  Exercise!  I have found a few children's yoga movies on our Amazon Prime that my daughter likes.  It's called "Kinda-Yoga" and she absolutely loves doing it before bedtime.  As I mentioned previously, she gets really excited and doesn't know what to do with all that energy.  I find if she's outside riding her bike, running up and down the street with her friends or does her yoga, she is more tired and able to sleep at the end of the night.

There is so much more out there and I am continually interested in learning more about trich.  I hope in the near future to become a little more involved in the actual community of girls that this disorder affects. More to come on that!

Frustrated

This post is about a week behind in publishing, but it has been crazy in our household the past few days!  First I was sick, then all kids ended up with pink eye, and we ended it all with a little touch of the stomach flu.  Lovely!!!
I'm glad I was delayed in writing though, because it gave me a chance to calm down a bit and recompose myself before going on a rant. 
Little girl had a rough week and pulled quite a bit on both of her brows again.  It always makes me a little upset and sad when she has a bad episode but I try to hide it the best I can so she doesn't feel bad about it.  There wasn't anything in particular that triggered it, unless her eyes were getting itchy from the pink eye and one thing led to the next... But what was most frustrating is that she deliberately took her gloves off and went back to bed without them TWO nights in a row!  I know she has a hard time falling asleep sometimes so we take extra time to rub her back until she's relaxed.  But when she wakes up in the middle of the night it's impossible for me to help her unless she tells us.  We've told her many times to just come in our room if she's having a rough night and we won't get mad at her, we're here to help her.  But, it just goes to show how powerful trich can be, and how it literally takes over and in a matter of 5 minutes, all the hard work goes down the tubes.
Prior to this episode she had been doing OK, mostly just pulling the lashes.  I rarely even notice it anymore because I think I've gotten used to the way she looks without them.  Her brows were almost completely grown back.  We've been on a gluten free diet, going on 2 months now.  I've read that it can take up to 6 months for the gut to heal from any gluten damage so I'm not completely giving up on it yet.  She is still on the pro biotic and NAC daily.  I'm making a second attempt to give her the Calm PRT, which is a supplement to calm her down before bed.  Since she is waking up at night, I'm hoping this will help her stay asleep.  The problem with it is that it tastes horrible.  It's in capsule form, and since she can't swallow it I have to break it open and mix it with something.  I've tried ice cream, applesauce, and juice and no matter what you can taste it.  I told her she's just going to have to suck it up and chase it down with milk.  So far she is being a little trooper about it.
Coming up we have a few appointments with Miss Brigitte and I think we should see the ND again to get an update from her as well.  Updates to follow!

The Happiest 5K on the Planet

Little girl and I did the Color Run again this year!  This is our 3rd year in a row, and it was probably the best one yet!  As I have mentioned in past posts, my daughter has endless amounts of energy.  This was a perfect, fun way to burn some of that energy off.  We thought we'd just walk but most of the way she kept yelling "Come on!  Let's RUN!"  So we'd take off running to get doused in colorful powder. By the end of it we looked like we ran through a rainbow.  We were a mess but it was totally worth it!

Gluten Explained

We have decided to take another stab at a Gluten Free diet!  We noticed once she was consuming wheat bread again, her pulling was worse.
Here is a really good video breaking down what GLUTEN really is and how it can affect our brains.  I really like the way this guy explains it.

Gluten Explained