Monday, July 30, 2012

Beauty Rest or Extreme Fatigue?

Hello friends.  Hope you are all having a great summer!  It has been a very mild summer here in San Diego.  The seasons really are changing!  We have not used our A/C once this summer which is really crazy!  Hey, I'm not complaining....I love a breezy 74 degree day like this!!

The girls start school in a week.  I'm not looking forward to it at all.   Carpooling, homework, early bedtimes and oh yeah homework aren't for me!  But, it is what it is.  Alex will be a high schooler!  9th grade!  I remember 9th grade like it was yesterday.  My first boyfriend, lockers, Friday night football games, dances, etc.  I am so excited for this time in her life!

Kiersten will be attending the same school but entering Middle School. It's a K-12 Charter school.   My youngest Ryan will still attend the elementary school down the street.  He will be a 4th grader.  He has the same teacher that Alex and Kiersten both had so that will be nice.  We really like her and she knows our family well.

Alex seems to be doing well......that is when she is not asleep.  I have never seen someone sleep as much as her.  I think what has happened is that her sleep times have been  turned around.  She is staying up so so late because she can't fall asleep but then she sleeps all day.   Last night I told her to go to bed at 11 pm and as of right now, 11:44 am she is still out.  I have gone to rouse her a couple times and she can hardly keep her eyes open to talk to me.

I have chatted with a few other RA moms and they all say their kids are the same. It could have to do with the fact that her body is constantly attacking itself, or the meds, hormones or that she simply needs the sleep.  I told her we need to start keeping a log so that we can see if there is any pattern to it. When she is awake she is fine.  She is full of energy and  happy.  I guess the reason it concerns me is because it seems to be getting worse.  I don't know how she will be able to sit through a day at school let alone come home and do homework.

Her appointment is in a couple weeks but I am hoping to get it moved up.  I will be sure to let you know.  So, bye for now.  Have an amazing week and I hope that wherever you are, you are able to get out and enjoy some great weather!!  Happy Summer!!

Monday, July 16, 2012

Alex's Bio

We were asked to come up with a bio to send to the Arthritis Foundation to use for a press release and I thought I would share the finished product here.....

Alex Ochoa is a 14 year old ninth grader at Guajome Park Academy.  She lives in Oceanside with her parents Pattie and Ben, sister Kiersten and brother Ryan. She loves the internet, her iPod and hanging out with friends.  There’s just one thing that sets her apart from other teens, juvenile arthritis.It all started in August of 2010. While out shopping Alex noticed how the cute rings at her favorite store wouldn’t even fit over her knuckles. Concerned by the swelling in her hands her mom made an appointment with her pediatrician.

Her doctor suspected it was Lupus or Arthritis and ordered lab work right away.  Even though the labs came back clear her doctor wasn’t convinced and referred her to rheumatologist, Dr. Szer.  After an exam and hearing how psoriasis runs on her dad’s side of the family Dr. Szer was convinced Alex had Psoriatic Arthritis and ordered an MRI.  Unfortunately the MRI confirmed her suspicion.

Alex started with the medication Methotrexate (MTX). MTX is a mild chemotherapy drug used to suppress the immune system.  Due to the dangers of this drug Alex now has to have monthly blood labs done to make sure further damage isn’t being done to her organs. This medicine makes Alex feel very fatigued and nauseas for a day or so after taking it.  This is commonly called a "MTX Hangover" in the juvenile arthritis world.

After another MRI showed that the medication wasn’t helping her doctor prescribed Enbrel.  Enbrel is an injectable medication that is given to her twice a week by her mom. Many people are becoming more familiar with this medicine due to the commercials featuring PGA golf pro Phil Mickelson.  He also suffers from Psoriatic Arthritis like Alex.

After months of being on both medications her most recent MRI is showing a slight improvement. This is a small step but one in the right direction.  The goal is to have Alex’s arthritis go into remission.  Since there is no cure for arthritis Alex will have it for the rest of her life.  But, with the right medication it is possible for her to live symptom free.

Having arthritis has been hard for Alex and the whole family.  The hardest part so far for Alex has been the fatigue.  There are days when Alex will get home from a long day at school and head straight to bed.  Last year she missed over 20 days of school due to illness, doctor appointments or just fatigue.

Her good days are spent acting with her Advanced Drama Group at her school, hanging out with family or friends, catching up on her favorite show Doctor Who and doing art. But without a doubt, anyone that really knows Alex knows her biggest passion is reading.She is hardly without a book and even read the entire Harry Potter series during her 7 week summer break a few years back.

Her parents credit their Christian faith and family in getting them through the tough times. They spent quite a while educating themselves on arthritis and her mom even started a blog ( to reach other parents out there who are going through the same thing.

The future looks bright for Alex. She is entering her freshman year at high school and hopes to go to art school afterwards.  Her lifelong goal is to someday work at Pixar Studios in the animation department.

Being chosen as the Arthritis Foundation Jingle Bell Walk Honoree has been a thrill for Alex and the entire family.  She takes this position very serious and looks forward to educating her family and friends on arthritis.  She hopes to speak to her classmates, peers and church about arthritis awareness, symptoms to look for and what needs to be done to find better medications and even a cure someday.

She started her team, Alex’s Alliance for the upcoming Jingle Bell Walk and hopes to get at least 50 walkers to join her.  Family, friends, neighbors and even her Kindergarten teacher have already stepped up to say they will join her team. She also has aunts and cousins coming all the way from Tennessee to support her on the big day!

The Arthritis Foundation is a wonderful organization that helps bring support and awareness to this awful disease.  Working with them has been an honor for the entire Ochoa Family.

Friday, July 13, 2012

So excited to share some big news with all of you!!  Alex was chosen to be this years Arthritis Foundation Jingle Bell Walk- San Diego Honoree!!  

We were thrilled when we received an email from the AF  asking us to come meet with them.  We are not too sure what it will involve for sure but it will be fun!!  We have already started a walk team called Alex's Alliance.  If you are interested in joining our team you can just go HERE.

We are so happy to bring awareness to Juvenile Arthritis and help people realize that yes kids get arthritis too!