Time Flies Whether You Are Having Fun Or Not!

I hate starting every blog post like this but really.....where have the last two years gone!  Let me just take a few minutes to catch you up!

I'll start with the kids.  Alex is almost 17 now.....I just can't even believe that.  She is a junior in high school and loves it.  She decided to join her co-ed wrestling team this year to my surprise.  She has never been into sports....at all. In fact the only activity she has ever participated in was a spring soccer program for 6 weeks and that was because one of her best friends was doing it at well.  Anyway, she loves it. It is very physical and the training is unreal!  Running, weight lifting, squats and of course...wrestling!  She has been able to keep up with the training amazingly well despite her arthritis. 

Another big change for Alex is that she is now vegetarian.  We are not huge meat eaters as it is but now she has completely cut it out.  She also cut out all soda, fast food and most sweets.  This was entirely her decision and I am proud of her.  

Health wise Alex has been doing pretty good.  Over the past few months she has noticed a lot more aches and pains all over her body which always seemed to coincide with the rain.  While it is common for arthritis patients to have this happen it is actually not that common for PsA patients.  The doctor thinks that there is a chance that she may also have fibromyalgia .  We are paying closer attention to her symptoms and pain and will report back to the doctor in four months.  It is quite common for kids with an autoimmune disorder to develop more than one.  

As most of you probably already know my son Ryan was also diagnosed with Psoriatic Arthritis in December of 2013.   He was having terrible crippling pain in his feet and ankles.  His doctor put him on Naprosyn for his inflammation and pain. This seemed to really help him.  At his last appointment (Jan 2015) his doctor was very impressed with his improvements and he is now just on the meds as needed.  

I think I will end this post here.  I just wanted to get on here to say hello and let you all know how the kids were doing health wise.   I will try to update again soon on the happenings with the rest of the family and my life.  There are a lot of exciting things going on!  Hope all of our JRA families are doing great!!  

Just a post to say Thank You to all of the wonderful people that donated to Alex's Alliance for the Jingle Bell Run!! 

Eddie and Peggy Kasaba

Anne Kingsbury

The Naglevoort Family

Tricia Kingsbury

Faith Steele

Karen Kingsbury

Luana Wilson

Mike and Stephanie Barnes

Danielle LaCoste

Jennifer Williams

The Lim Family

Shelby Lloyd

The Kane Family

Douglas Gilbert

Justin and Dylan Head

Kim Allen

Carol Gidner

Mr. Cannon

The Rochelle Family

Kathleen Oversmith

Lisa Scott

Barbara Perdue

Cindy Skeber

Noel and Julie Mechelin

Victor Edinian

Tom and Sue Barnes

Sheila Graciano

Margy Lara

Donna Crosby

Carol and David McCall

A special Thank You for all our Alex Alliance team members!  

Tom Barnes

Sue Barnes

Peggy Kasaba

Ed Kasaba

Elizabeth Allen

Sarah Braithwaite

Lori Cripps

Sara Cripps

Madi Estrada

Gabie Hanson

Skylar Mason

Monica McDonnough

Emily Sisavath

Chloe Steele

Faith Steele

I also want to give a huge shout out to the Mason Family who are all coming down to Balboa Park and volunteering for the morning!  They are great friends of ours and their daughter (Skylar=listed above) is a member of Kierstens scout troop. So, as you can see everyone has really stepped up to help us out!  Truly blessed!!

Plus....we are so excited to have my Aunt Anne, cousin Lynne and her girls Courtney and Jessica coming all the way from Tennessee for the event!!

We are so amazed by everyone's support!! This is such an important cause to our family and we love seeing other people getting involved too. 

World Arthritis Day!! 2012

Well, today is World Arthritis Day!  In the past I would see such days as World AIDS Day or Diabetes Awareness Day.  There would always be some ribbon associated with it.  You know the ribbon that is a different color depending on what the illness is. Well, for the first time ever I get it!  I really get it.  It doesn't matter what the color is but what it represents.  The fact that we all put on a certain color doesn't matter.....it's the fact that we had to consciously think about Arthritis while we were putting it on.

If you read other blogs like mine you have read others complain about how Arthritis kinda gets the shaft.  It's not that we don't feel like Breast Cancer Awareness, Cystic Fibrosis or AIDS is important....it is but we would like to be heard too.  In a weird way, arthritis isn't as popular as other diseases out there. Lets face it....when have you ever seen a well known super star on a talk show in tears talking about their loved one with arthritis.  Or watched a three minute commercial that brought you to tears because it reminded you of an important woman in your life that you have lost.  Plain and simple people just don't talk about arthritis.  Why?

Arthritis affects millions of people in the world.  If affects more children than many other diseases combined. Many arthritis patients have to take chemotherapy to treat their symptoms.....Alex does. Others have to go to Cancer and Dialysis Centers or hospitals to get infusions that take up to 8 hours to be pumped through an IV and into their bodies. Alex is only a couple steps away from this if her body doesn't go into remission soon!   Just like Cancer, Arthritis can spread into other areas of the body if not treated correctly or quickly enough.  And, just like Cancer there is a chance it could go into remission.  But, did you know that it can also be life threatening....just like Cancer? Yet people still associate arthritis as something their grandma has.  It is much much more than that friends!!

The goal of myself, my family and pretty much every parent of Juvenile Arthritis and of course the Arthritis sufferers themselves is AWARENESS!!!  I want there to be a 6 hour concert/telethon on tv with all the hottest celebrities out there.  I want to open a magazine and see a BLUE ribbon and a pair of hands that talks about how important funding and research are. I wan't to see pictures of beautiful children with a simple line that says "Kids Get Arthritis Too" underneath.   I want fundraising walks and runs that draw thousands and make millions!

So today on World Arthritis Day I did all I could.  My family and I wore our blue, we made cookies with blue frosting to hand out to friends, I wrote about Arthritis multiple times on my facebook account, my twitter and even Instagram.  I have done all I can for today but I am not finished. With the help from all of us we can bring a bigger awareness to arthritis.  Lets make it just as well known as any other terrible disease out there so that we can get help!  We need help by more research, more medicines, more doctors and bottom line more money!  Will you help me do this?  Together we can!!

Finally, I leave you with pictures of family and friends we love!  They chose to wear blue today for Alex but also for all of you who suffer out there.

My brother Mike

Michael and Matthew Lim

My sons best friends

My cousin Sue

Chris Cloud

A JA friend of ours

My husband Ben who sent this from Georgia

while on his business trip......after hours!

My cousin Tricia and Aunt Anne all the way from 

Tennessee!

My cousin Lynne also from Tennessee!! 

Alex's hand....swollen but proud to support! 

Alex brought cookies and coffee cake to school and 

received about $6.00 in donations!

I also had notes from friends on my facebook that did not post a picture but did wear blue.....

Ceci Mason, Heather Craig, Sara Cloud, Jody Mitchell, Michelle Nagelvoort and my mom Sue Barnes! Let me know if I've forgotten anyone!

Getting Committed

No, I don't mean getting committed to the hospital.  I mean getting asked to join the San Diego Arthritis Foundation Committee.  What does that mean?  Well, to be honest I am not sure.  What I do know is that this "committee" meets once a month and talks about upcoming AF events.  I'm sure there's a lot of planning going on too.  

So, to be completely honest when they asked me I recoiled just a bit.  "What? You want me?  To do what exactly?  Will I have the time?".  All these questions went on in my head but then I thought about it.  There have been so many signs and pushes into this direction.  I truly believe everything happens for a reason. It started quite a while ago when the online AF approached me about writing a blog for their site....which I never did.  Then my doctor mentioned that I should attend different AF events here and there and never went.  Then Alex gets picked by the AF to be their honoree.  Then I get the email asking me to make this commitment.  What if GOD....yes GOD is trying to tell me something....lead me somewhere.  So...I said YES!!!  I will join the committee...ha ha!!  

The way I look at it, being a volunteer benefits them and myself and our family.   When your child suffers from something you feel very alone.  Even though my previous post was all about my support system you still feel like no one truly understands......unless they are going through the same thing.  I need my old friends to keep my life as normal as possible but I also need new ones to make me feel whole.  Over the weekend I had the chance to go to an Arthritis Foundation event.  A symposium focused on Juvenile Arthritis.  There were about 20 families there.  It was so nice to be in a place where I could walk up to just about any of them and talk about our journey and know that they truly understand.  It was so comforting.  

Being part of this committee will enable me to not only raise awareness but hopefully gain some new life long friendships.  Hopefully I can help the foundation with my desire and drive to get the community together and support each other.     So yes please....commit me!!!

Team Huddle

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis.   Yes, she is the one with the disease but there are so many there behind her to help us get through it.  Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha).  But let's not forget my parents Sue and Tom.  Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot.  My mom is always telling me about new things she has learned  regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

 My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment.  We love and appreciate them all so much!

Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis.  Or, we would have found out after much more damage was done to her joints!!  Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy.  Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now!  Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree.  I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line.  One side is living life as if nothing was wrong, all is great in the world.  The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration.  I try to live right in the middle.  Sometimes I fall over into the dark side and that is where you, my dear friends come in!  The friend that sticks out the most in my mind is Michelle Naegelvoort.  Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades.  My Alex left that school to attend one closer.  A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years.  Michelle was one of them!  In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!).  So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common.  Our kids go to some of the same doctors and have been on some of the same meds.   It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen!   Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!

I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta.  There is a group of amazing moms online (facebook) that I have contact with on a daily basis.  The group is specifically for moms of kids with juvenile arthritis.  We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission!  We are from all over the world...some from as far as Australia!  I think we would all agree that having this group has been one of the best things that has happened in this journey!  Someday we will have to plan a meet up!!

So, as you see I could go on and on.  My point in all of this is that Alex could not be going through this alone!  Each one of you hold a special position in the team.  You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough!  I can't thank you all enough!  And thank you for being part of Alex's Team!  Now it's time to go beat this!!!

September

Awww Septermber!  I love this month.....summer is coming to an end and fall is on the horizon.  All the kids start a new year at school with a fresh slate!  The crazy thing is that San Diego just started getting warm!  We had a very cool "summer" but ever since school has started it has been in the 80's!

Other than that we had a pretty quiet August.  Kiersten turned 11 and is having a sleepover this weekend to celebrate with her friends.

I have a weird thing going on....my fingers on my right hand are numb....like all the time.  I went to the doc and she is pretty sure I have a pinched nerve in my neck.  I have to get an MRI and see what's going on with it.

We have a meeting next week at the Arthritis Foundation to go over the upcoming events.  The official Jingle Bell Walk kick off party will be on 9/25 at Road Runner Sports!  This will be her first public event so fingers crossed!! Bottom line it will be lots of fun!!!!

Well, that's it for today.  Don't forget to go here to sign up for the Jingle Bell Walk!!  If you are not local you can always make a donation.....any size counts! You can also search to see if there is a walk in your area and start your own team!!  No child should have to deal with arthritis!

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!!