I started this blog as a journey of a child’s life with juvenile arthritis...

...the ups and downs, the doctor visits and treatment options, overcoming pain, and how Savannah lived her life to the fullest despite a juvenile arthritis diagnosis.

My daughter Savannah still deals with arthritis every day, but she does not let arthritis define who she is.  She has started her own blog - Word and Sunshine.  It can be found on Instagram, Facebook, and on the web at wordandsunshine.home.blog

She chooses to share the joy of living one’s best life, despite challenges.  So, I end this blog here, for it is time for this girl to fly solo!  My prayer is that this blog has blessed you in some way.  Savannah is a fighter...and while arthritis is part of her story,  she is stronger and a better person because of it. Thank you for all your prayers and sharing Savannah’s journey.  💜

Juvenile Arthritis - Choosing Joy!

Winter months are difficult for Savannah.  The cold days and change in barometric pressure seemed to wreak havoc on Savannah’s joint pain.  At age 16, Savannah has now lived with a diagnosed condition (Spondyloarthritis and Psoriatic Arthritis) for eight years...though the pain started soon after her birth....we just did not know why she could not sleep soundly.
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Savannah has never slept completely through the night...ever. I kept waiting for my newborn Savannah to sleep through the night...3 months passed, then 6 months...1 year, 2 years, now 16 years have passed, and Savannah is yet to sleep through the night without awakening several times. I did not understand why Savannah never slept through a night until her diagnosis.  You see, her joint pain awakens her as her joints stiffen after staying still for too long....this includes lying in bed.
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Older people with arthritis might understand this pain that I am describing...as Savannah’s 44 year old mother, I do not know this pain, and I sleep fairly well each night....always have.
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Truth: I slept with Savannah for years trying to help her manage... getting heating pads, ibuprofen, rubbing her joints, or whatever else she might have needed to manage the pain.  When she got to her teen years, she slept on her own, and managed on her own. -Accept, two nights ago, she asked if I would stay by her side...the pain was worse than usual.  Throughout the night, Savannah flailed, got up numerous times to stretch, take Advil, or change positions in the bed...all trying to relieve the pain in her body.
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I realized the pain was still so real, so present, and began to cry.
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Then, Savannah reached over and told me not to cry, she reminded me she was use to the pain and not sleeping well...that this was her “normal.”  She also reminded me that if one chooses to be thankful and serve others, it is hard to feel sorry for yourself and feel sad. So, this is what Savannah does...she shares joy, chooses to look for blessings around her, serves others...and the pain is no longer the victor.
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Thank you, Savannah, for reminding me to choose joy in this life!  Savannah prays you will look for the many blessings in your life, no matter your challenges...
and to always look for the joy around you.

 

Teenage Blogger...This Girl is spreading joy and encouragement.

This is not my typical post for Savannah.  Instead of talking about juvenile arthritis, I am sharing that Savannah has launched her own blog!  There are many blogs out there, but few are written by teens.  If you need a dose of sunshine, here it is! She will discuss triumphs, challenges, anxieties, heartbreak, and living a life for God as a teen.  Also, not settling for less than God’s best in your life will be addressed, along with “dating with a purpose.” Savannah is God’s vessel, and she wants you to run the race of life alone side of her. Her target audience is teen girls, but males, females, young, and old can benefit from her blog. Feel free to share her site!!!
Savannah’s personal blog to encourage teen girls:wordandsunshine.home.blog

wordandsunshine.home.blog

wordandsunshine.home.blog

Finish the Race

As Savannah approaches her 16th birthday this weekend, I am amazed at the young lady she has become. No, this post is not about arthritis pain, but living a life with purpose despite your obstacles...whatever they may be.

Savannah ran her first 5K trail run this last weekend...well, she attempted to, anyways. You see, Savannah ran the first mile like the wind, faster than I have ever seen her run...then, gut wrenching pain seized her stomach.  She slowed her pace, grabbed her stomach in seething pain. She had to quit the race one mile in, attempting to just make it to the bathroom because she was about to spew from both ends (her words, not mine😜). We try to keep it real on this blog, and sometimes life is not pretty, and definitely not ideal.  However, after spending some time with the “porcelain thrown,” Savannah returned to the course and finished the race.  The stomach cramps had not left, she wanted to give up, she could not run due to pain, it might have been last place she came in...but, she finished because she was not going to give up...she fought her way to the end, gritting her teeth.  Her friends went back for her...so she would not have to finish alone...to support her because they love her. So, this soon to be girl with a drivers license keeps making her way through this life the best she can, mike by mile, inch by inch...and she wants her readers to do the same.

Teenagers with Arthritis - The Sky is the Limit!!!

Savannah is swimming on the City League this summer…a first for her!  It requires commitment, hard work, and no excuses!  Swimming is such a great fit for anyone suffering with arthritis of any age.  So, if you are a teenager with arthritis and don't think you can play sports because of it…think again!  Try swim!!!!!

Thank you, everyone, for praying for Savannah through the years and cheering her on.  She has come so far…and a lot of that is because of your prayers.

Overcoming Adversity and Reclaiming Life - A Teen with Juvenile Arthritis

The following was written by Savannah Nelson for a class at school.

A glimpse inside the life of a teen with Juvenile Arthritis.

The Photograph

In my room, I have a picture of my seventh grade JV soccer team in a huddle. For most where that photo might just represent past memories, for me, it symbolizes reclaiming my future. When I was in second grade, soccer was my life. My days were spent at camps, games, practices, and trying to simulate the lives of my favorite players. Everything I did was connected to the sport, and I lived for the rush of stealing the other team's ball and ensuring it made its way into the goal. The only problem was the opponent wasn’t my only adversary, but also my own body. All my life, I had struggled with extreme pain in my fingers, and as time went on, the agony had spread to my feet. As the seasons rolled through, the pain progressed, but so did my passion. It got to the point where my father had to carry me off the field after games due to the extreme pain in my feet. Even then, I never missed a practice. 

My joints caved on me the following season, and I was forced to give up the sport I loved. I was diagnosed with Juvenile Psoriatic Arthritis and Spondyloarthritis a few months later. From there, I fell into a state of self-pity, and my own thoughts imprisoned me. Many years, medications, and infusions later, I slowly made progress, both physically and mentally. My seventh grade year, I had put myself back together enough to work up the courage to try out for the soccer team. This wasn’t only a choice to join a sport, but a decision to break the shackles that held me to my past. I practiced everyday after school for weeks leading up to the tryouts, and when the roster was posted…there was my name listed…I had made it!  I will never forget the weight that had burdened me for so long being lifted. After that season, I learned that soccer just wasn’t my love anymore, but even so, it gave me something in a way nothing else could: my life back.

Weather Conditions…Dealing with the pain.

The weather.  Freezing cold, then warmer, then a drop in pressure, storms coming accompanied with a cold front….the weather conditions can be murderous on someone with arthritis!  However, if you are a teenager with arthritis, you have to walk to classes, take numerous notes in class, participate in sports….be a teenager!  These tasks, that should be so simple, can be near impossible because of painful joints.  Savannah had a hard time just standing in the kitchen this morning before school.  She took her arthritis prescription medicine and Aleve…but she needs more!  She just texted me asking what more she could do for the pain.  My answer, we will pray harder!

Juvenile Arthritis - Finish the Race!

Living as a teen with arthritis is kind of like Savannah's swim meet yesterday…some days you get rained on.  After a fifteen minute delay as the rain poured in Mobile, AL, the meet continued…and Savannah got her best personal times ever!




Much of Savannah's success is due to the people whom cheer her on everyday…Jenna, Sarah, Lauren, Garrett, and Nolan to name just a few. These two guys came straight from a college exam to cheer Savannah on…we love you Cody and Kyle!  To everyone who reads this blog, the power of an encouraging word to those struggling can mean the difference of finishing a race…and finishing it strong!!



It was just five years ago Savannah could hardly walk, let alone run.  She competed in a one mile run…and it took everything in her to finish that race…but her friend Hope cheered her on that day, and even ran across the finish line with her….reminding her she can overcome her challenges.





This weekend, Savannah will attempt her first 5K without assistance (i.e. wheelchair).  Savannah may not have the best time on the clock at the end of the race, but finishing will be her goal.  Mornings are hard for most anyone with arthritis (joints are very stiff), so the 7am start time with be a challenge within itself.  However, with friends encouraging her…she has the courage to try.  As her friends run, part of Savannah's spirit will be with them wishing she was running beside them.  However,  Savannah plans to walk…and she hopes to walk for all the Juvenile Arthritis kids who cannot walk because of the pain within them.  Don't give up, because even though there are rainy days on this journey, the sunshine will come again.  Meanwhile, Savannah will walk for you.

JIA: Sometimes All You need is Someone to Cheer You On!

2017 swim season has officially begun!  This is going to be a short, but sweet post.  Savannah's arthritis has still yet to ever go in remission, but it is manageable with prayer, sulfasalazine, and friends cheering you on!  Life with JIA is definitely a roller coaster, but today was a very good day!!  Also, Savannah got her best personal time ever in 50 freestyle!!  She also finished strong in breaststroke.

Precious friend cheering Savannah on during breaststroke.

Some of the female swimmers at PCA …so blessed!

Her Joints Were Not Made to Walk Large College Campuses...but, God is Writing Savannah's Story

Savannah is in Science Olympiad at school...you know where a bunch of kids get together and make and learn great science stuff! (Oh, forgive me science teacher for this pitiful description).  Anyways, her school made it to state this year where she and her teammates competed with 14 other schools from Alabama at Auburn University.  AUBURN...a beautiful university campus and one my daughter has dreamed of possibly attending for many, many years...well, until yesterday.  After walking all over campus for her different events, Savannah's joints were screaming in pain!  Her joints are just not made to walk great distances all day long, especially when she is in a flare.  But God is telling this girl's story, and where a door closes, another one will open.  We believe a smaller college campus is in this girl's future.  So, if any other Juvenile Arthritis families have any advice on attending a small school campus verses a big school campus, please comment below.  We can all learn from each other.  Also, everyone who is reading this, thank you for taking this journey with us.

Everybody, come take my hand.
We'll walk this road, together, through the storms, 
Whatever weather, cold or warm.
Just letting you know,
that you are not alone.

It's Back!! Arthritis has returned, but she pushes forward.

It started with pain in her knee.  Then pain in her ankles.  Then she had trouble writing.  We knew the signs, but you just want to pretend it is not there.  The pain never really left, but it had become manageable.  Now, to write three sentences is a challenge.  She is in athletics 7th period because she is on the School Swim Team first semester.  Swim= Awesome for joints! Running stadium steps second semester to "stay in shape"= totally horrible for someone with active arthritis in her knees and ankles.  Yet, she refuses to give up because she doesn't want to be seen as different.  Can anyone else relate??  Love this girl.  If you can relate, know you are not alone.  Savannah is walking this path with you...and some days the walk is awfully hard. She still pushes forward, though...because she chooses to.

JIA Families...A New Beginning

Dear JIA families,

I have shared on this blog the good and the bad with Savannah's journey with arthritis.  Savannah has seen two years of monthly infusions, jaw injections twice, years of daily medicine, being in a wheelchair because of severe pain, weekly shots, sleepless nights...you get the picture.  But now, we want to share the good from it all.  Savannah is compassionate, a fighter, looks for the positive, courageous, and more well rounded because of her arthritis journey.  And now, she is also a child of Christ.  We want to share this joy with our readers because this blog is not only about a child's arthritis journey, but the blessings in spite of it.  Savannah became a Christian Oct. 6, 2016 through faith and obedience.  To God be the glory!!!

Savannah being baptized by her Papa.

Juvenile Arthritis and Swimming...a Great Combination

Savannah had her first swim meet today...it was a great success!  She swam with all her heart and her joints handled it wonderfully.  Savannah is so blessed in so many ways and we thank God for the Prattville Christian Academy swim team! Thank you to all who have prayed for Savannah as we celebrate this blessing together!

Yes, life with Juvenile Arthritis is a roller coaster, and we thank God for times like these that are wonderful and down right fun!  ... And when we hit a dip or crazy part of this ride/journey with arthritis...we will remember days like today...and we will be thankful.

Juvenile Arthritis -Teenage Years and Junior High - What Helps

I haven't posted in a long while...sorry about that.  Sometimes you just don't know what to say, because life is a roller coaster with juvenile arthritis.

SO....here are some helpful ideas for living with arthritis as an 8th grader, so far.

1. Savannah's locker:  All lockers at Savannah's junior high school have a lock built into the locker....all lockers but ONE...Savannah's locker.  This is because the school physically removed Savannah's lock on her locker because her hands are not able to maneuver the opening of the lock due to the arthritis in her fingers and hands.  We are thankful to the school for doing this...sometimes you just have to ask.

2.  Savannah has joined the school swim team!  This is a huge thing, because this is the first sport she has played that has really not affected her joints for the negative...in fact, the movement is great for her joints!! Soccer may be a thing of the past (so much running was killing her ankles and feet), but swim...well, it is a blessing from God for Savannah.  Looking for a great school sport for arthritis...try SWIMMING!

3.  Savannah still uses her pencil grip to write every day, but sometimes there are too many notes to write down for hands with arthritis to manage.  So, Savannah takes her phone or computer and takes a picture of the notes on the board as the teacher writes them down.  She then prints them up on our printer and puts them in her notebook for future studying and notebook checks.

4.  SUCK IT UP!  Yes, this is the term we use amongst ourselves.  Sometimes, no matter how much it hurts, you just have to "suck it up" and deal with the pain as best you can.  If Savannah wants to wear some cute shoes without her shoe inserts, she "sucks it up".  If Savannah wants to run the football on and off the field as "ball girl" to help manage the varsity football team on Friday nights, she "sucks it up" (even though this simple act makes her feet and ankles scream by the end of the game).  Get the point?! Don't let arthritis stop you from doing things that are most important to you. 

Savannah's life is more than arthritis...it is full of so many opportunities and blessings.

Playing Soccer...Overcoming Arthritis with Prayers and Hard Work!

Savannah got some playing time in her school's JV soccer game tonight. Living the dream with the help of prayers and determination.  

Victory Over Juvenile Arthritis...Fighting Back and Praising God

Today is a long awaited post.  This post would not be possible without Savannah's prayer warriors.  Savannah played in her first JV soccer game...and they won, 8-0! However, the biggest victory is Savannah being able to play.  Just four years ago, Savannah was in a wheelchair on her worst days...the pain too bad for her to even walk, let alone run.  Through God and prayer, grit, and lots of determination...she accomplished her dream...playing soccer again. #nevergiveuponyourdreams

All smiles...ready for first game!

Some of Savannah's closest friends...living the dream together.

She made the JV Soccer Team!!!

God is bigger than Juvenile Arthritis!!!  Savannah made the JV soccer team at her school!  Thank you for your prayers!  It made a difference!

She is Trying Out for Soccer!! - Please, Keep Praying!

Your prayers are being heard.  She is overcoming FEAR with COURAGE and trying out for her school soccer team in October.  Please continue to pray, that if it is God's will, she will play again.  Juvenile Arthritis...God is bigger than you.

Juvenile Artritis (JIA/JRA) - Jaw Involvement - Helpful Information

To my readers of this blog:

One of the things I am contacted most about is information on jaw involvement with Juvenile Arthritis.  Let's face it, there is not a lot of information out there.  After one of my readers contacted me seeking more information, I looked to a couple of my fellow JIA moms for wisdom.  The following is from a mom who has a daughter with extreme jaw involvement.  Dr. Cron and Dr. Waite, mentioned in her writings, are located in Birmingham, AL.  They are believed to be some of the experts of this field.  I asked permission to share my friend's information in hoping it might help another family looking for any information concerning inflammation in the jaw with JIA.  My prayer is that it helps someone.  -Jenny Nelson

"My 17-year-old daughter was diagnosed at 14 with TMJ involvement, and Dr. Cron is her pediatric rheumatologist. She has had three aristospan (steroid) injections in her left side, and one aristospan injection in her right side. The injections helped, but the pain, inflammation and deterioration always return at some point.

Dr. Cron sent us to Dr. Waite for Remicade injections after my daughter's last MRI. Because my daughter has had several friends who had negative results from Remicade injections, she told Dr. Waite that she was not comfortable with that option at this time. Dr. Waite understood, and in fact, said he wouldn't suggest Remicade injections just yet because she is able to eat and the pain in her jaw is manageable. He recommended not doing anything at all until she has significant pain and/or is unable to open and close her jaw. When she gets to that point, he said he would do a procedure to "clean out" the joint, which he has found to be helpful in a lot of patients. He told her that she has several options besides Remicade, and that he is willing to work through those options with her.

I see that you mentioned that the latest results of this procedure do not match the positive/potential beneficial outcomes that were portrayed in 2013. It is my understanding that injecting Remicade into the TMJ began as an experimental treatment, and as such, the long-term effects of this treatment were unknown. Of course, every patient is different, and every patient reacts differently to medications, so some people have had positive results, while some have had negative results. If you have any doubts at all about the Remicade injections, I would suggest that you discuss them with Dr. Waite. He is very open-minded and willing to listen to your concerns and answer your questions."

FEAR FACTOR

"Once upon a time, there was a young girl named Savannah who LOVED to play soccer!  She would play five days a week for two teams at the same time when she could. Then, a monster named J.A. (Juvenile Arthritis) came along and swiped the girl's love for soccer away by causing tremendous pain in her feet and ankles.  The girl pretended it did not matter, but the girl's mother knew better. Years later, as the girl approached 7th grade, the girl pondered if she should play soccer again.  But, a new monster named FEAR tormented her."




Yes, Savannah has started the 7th grade and she loves school!  Her pain is still well managed with Sulfasalazine. It has not taken away all the daily pain...but enough.





FEAR is Savannah's greatest enemy right now.  After awakening in the morning, I have pushed Savannah from her bed, to the bathroom, then the couch in a rolling desk chair for going on five years.  I encourage her to get up and walk, but she is FEARful her feet will hurt too badly (morning stiffness) like they did years ago before her diagnosis and medicine.




Savannah has the chance to try out for her school soccer team this year, but FEAR is calling her name...just like it does each morning when she wakes up.

I ask you to pray Savannah can BEAT THE FEAR!!   Anyone else dealing with the fear factor??  If so, you are not alone.