I’m an Ambassador, I’m an Advocate, I’m a JIA Warrior Mom

yes-advocateWhen my daughter was diagnosed a year ago with Juvenile Idiopathic Arthritis (JIA) my brain was swirling.  Over the past year she progressed from 1 joint containing arthritis to 6 joints and her eye.  I have been so very blessed to find a support group of moms from all over the world who are Mothering Juvenile Arthritis.

Who are these moms?  Most are seasoned Warrior Moms, some are new moms (like I was), all are fighting the fight along side their children.  Some have been to battle and won, some have been to battle and lost dearly, some of us are still fighting the battle every day.  Regardless of where we are in our journey, these moms have been a blessing beyond measure for me for the past year.  I have had the pleasure of talking on the phone with several moms, whom I have never met in person, to compare notes and get support.  After only 1 year on our journey, I am now one of the seasoned moms answering questions, providing support and giving input or encouragement to other new moms who are just starting to wrap their heads around this diagnosis.  We are a team.  We are fighting this disease together.  We spend countless hours on the phone with doctors, insurance, and pharmacies.  We spend grueling hours in cars and on airplanes to take our children to doctor appointments.  We have come to consider the team of doctors we see as family and we sometimes see or talk to them just as much as our real families.  We pray daily for our JA family members who are facing appointments, medication changes, flairs, pain, frustration… and we celebrate loudly our members who have reached remission!   We are in a never ending state of awareness of our children and how they move (or don’t move) and what their joints look like.  We are fighters.  We will fight with our children to encourage them to move and we will fight for them when the pain is so extreme they can’t move another step.

But our mission and fight doesn’t stop with our circle of JA Family or our personal daily battles.  We Advocate for all children with JIA.  We tell our stories to anyone who will listen.  We raise money to help find a cure for this dreaded disease.  We are Ambassadors and go to Capitol Hill and talk to Congress about the needs of our Arthritis Community.  We will take our fight where ever we need to take it in order to help others gain easier access to doctors, medications, treatment, and research.  We will make our voices heard so that our children do not have to suffer in pain silently.

NO child should ever think that living every day in pain is normal.

How can you get involved?  You can become an Advocate!

What is an Advocate?

Advocates help improve the lives of people living with arthritis. The key to success in changing government policies and funding is through grassroots advocacy and our advocates are the Arthritis Foundation’s chief resource for making positive changes in Washington. Click here to join the movement!

Source:  Arthritis Foundation, Advocate 101.

What does an Advocate do?

Advocates make their opinions and personal stories known. By signing up, you’ll receive Action Alerts in your inbox when important arthritis-related issues are debated on Capitol Hill.   In 5 minutes or less, you’ll be able to write your elected officials and tell them their constituents care about arthritis and how it impacts our communities.

Source:  Arthritis Foundation, Advocate 101.

Want to do more?  You can become an Ambassador!

What is an Arthritis Ambassador?

Arthritis Ambassadors are volunteers committed to taking part in the democratic process and serve as liaisons between the Arthritis Foundation and their Congressional District’s Representative. Each Ambassador’s efforts are crucial to the success of the Arthritis Foundation.Ambassadors are asked to work with the Arthritis Foundation Advocacy and Access staff on special activities to advance the Foundation’s advocacy efforts and to share their story with important decision makers. There is an Ambassador Briefing every other month to:

  • Update Ambassadors on the latest advocacy news
  • Present special guest speakers
  • And work on activities that will further Arthritis Foundation advocacy at the state and federal levels

Calls are recorded and posted to the current or past activities page. Ambassadors must be of voting age (18+). Click here to sign up!

Source:  Arthritis Foundation, Ambassador Program.

What is the difference between an Advocate and an Ambassador?

An Advocate receives the bi-monthly Advocacy in Action newsletter as well as periodic Action Alerts.  Action Alerts are customizable, pre-written letters that are sent directly to your elected officials.  Advocates also have access to the monthly Advocate Webinar Series, a collection of webinars on different advocacy topics that help Advocates understand more about Arthritis Foundation advocacy issues and topics. Click here to sign up as an Advocate!

An Ambassador is committed to forming relationships with their state and federal elected officials.  Ambassadors also receive Advocacy in Action, Action Alerts, and access to the Advocate Webinar Series, but also have the opportunity to participate in briefings held every other month.  Ambassadors have an activity every month with the goal to foster the relationship between them and their elected officials.  Click here to join the Ambassador program!

Source:  Arthritis Foundation, Advocate 101.

Join the movement!  Get involved!  Let’s fight this fight together.  Together we are Stronger than JA!

My Super Girl


A conversation I had with Sophie the last week has been replaying in my mind over and over.  Before her bedtime prayers, we always snuggle and talk about what happened in the day to make us happy, sad, mad or silly and what we did that was nice or kind for someone else.  As usual when we got to what made us sad or mad she shared that it makes her sad when she hurts and that it makes her mad that she has “artritis”.  Whenever the arthritis is a topic it is always followed with the big “why” question.   I have always answered her “why” question the same way, that “I don’t know why” and that “God has big plans for her and sometimes in order for us to be ready for those big plans we have to go through hard things that hurt sometimes” and that “this is why we take her medicine so that it can help her to not hurt as much and get better”…  usually she focuses on the medicine and my answer is followed with how much she doesn’t like her “red shot” (the Humira) and the conversation moves on to something else.

This time though… THIS time she focused on the “big plans” part of my answer.  She looked at me, with the sweetest sleepy smile on her face and says, “Mama, maybe God wants me to be Super Girl so other kids can be strong when they are scared and I can help them”.  I seriously had to pause to regain my composure to respond…   “Yes, sweetheart, you are very right, maybe God wants you to help other kids be strong just like you are and you know what?  You are already my Super Girl and mama is so proud God chose me to be your mama.  That is my happy part of my day!”

This girl.  She is wise and strong beyond her 4 years.  She tries my patience every day with her strong will and independence but also teaches me every day what true strength and trust in God really look like.

Thank you God for choosing ME!  My cup overflowing!

April Showers

weather the stormApril hasn’t been our month, and that is saying it nicely.  Honestly, April has been our worst month yet on this journey.

We started out with a recheck appointment with the eye doctor to see if the inflammation in Sophie’s right eye had finally resolved.  We were dealt what I can only describe as a gut punch.  One of those doctor appointments that leaves you swirling and almost out of breath.  After 2 weeks off of the steroid eye drops, we were told that she had an adhesion (a synechia) in her eye from the inflammation.  A synechia is an eye condition where the iris adheres to either the cornea (i.e. anterior synechia) or lens (i.e. posterior synechia).  In Sophie’s case hers was an anterior synechia.  Synechiae may lead to certain types of glaucoma.  Anterior synechia causes closed angle glaucoma, which means that the iris closes the drainage way of aqueous humour which in turn raises the intraocular pressure.  So, in simplicity, my 4-year-old is at risk of glaucoma from the inflammation and adhesion in her eye.  In an effort to “break the adhesion” loose we were given eye drops to keep her eye dilated and a new steroid eye drop with a recheck scheduled for 2 weeks.

That appointment was on a Wednesday.  The following Sunday, Sophie woke up at 4 am with a fever that was over 103 degrees.  She has never spiked a fever this high this unexpectedly.  This mama was scared.  My first phone call was to my best friend who is a nurse (and who can keep me thinking rationally), then to my folks to let them know we were heading to the ER at Blank, then to Sophie’s dad.  I dosed her with Tylenol and took her temperature before we left, 103.7 degrees.

At the ER, they checked her over, gave her toys to play with, took a lot of blood and swabs… and said they didn’t see anything so suspected she was fighting a virus.  After about 4 hours, they sent us home to keep an eye on the fever and continue the cycle of Tylenol going.   At 2 pm, her fever maintained just above 102 with Tylenol and she was very tired all day.  In the middle of the night when it was time for her 1 am dose, her fever was down to 100 and I thought we were finally breaking it.

Then again at 4 am she woke up with another fever over 103 (and an hour left till her next Tylenol dose).  I was again on the phone with trying to decide the next course of action.  I decided to give her a dose of Tylenol 30 minutes early and see if it responded then head into the ER if it didn’t.  However, when I went to give her the Tylenol, I discovered she was covered in a rash all over her trunk, arms and legs.  ER trip number 2 was not waiting.

Thankfully she was seen by the same doctor as the morning before and it was discovered that she had a raging strep infection.  After morning #2 in the ER we were sent home with antibiotics and to follow up with her primary care physician.  If the fever didn’t respond or she got worse we were to go back to the ER.  Thankfully, her fever started responding fairly quickly and I was able to keep it under 102.

That night we were snuggled in bed, Sophie was comfortably asleep and I was almost there when the ER called and told me they needed her to come in right away due to bacteria growing in her blood culture from the first visit.  So, now I had to wake up a sick, tired, sleeping little girl, put the magic cream (Lidocaine) on her for the blood draw and drag her back to the ER in the middle of the night.  Thankfully, since her fever was responding to the antibiotic and she was acting more normally, they let us take her home to continue the rest and meds while we waited for the results of the second blood culture.

So, that is 3 ER trips in under 48 hours.  We were exhausted.  I was scared by how sick she had gotten so quickly.  On Wednesday, I got the call from the ER that her second draw was not growing the Staph bacteria that her first one had and they would continue to watch it for a total of 7 days giving me daily updates.  While talking to the ER doctor, I was given her official diagnosis from the ER trips… she had Strep and Scarlet Fever (caused by the extreme Strep infection and is ultimately what caused the high fever and rash) and that both were responding to the antiobiotics.  At her follow up appointment her primary care physician indicated she was pretty sure Sophie was also dealing with Mono on top of all of it because of her fatigue.  The daily updates about her blood culture remained clear, which was a major relief.

That week was the longest scariest week, constantly watching her fever to ensure it didn’t spike again.  It was scary knowing how close she had been to being admitted.  It was terrifying having to watch and know that if the fever spiked again before she was done with the antibiotic we would be facing the admission we had so far avoided.  It was scary realizing that her arthritis meds were a contributing factor in how sick she got and how fast because her immune system was so suppressed.  It was sad and fearful knowing that we had to hold giving her the immune suppressing meds until she was past the infection and that by holding those meds (in addition to her being so sick) was going to inevitably cause her joints to flair and pain to increase.

But here is what I know from my experiences that week, my daughter was once again amazing.  She took it in stride with a cheery attitude and made new friends with her nurses and doctors in the ER.  She had amazing nurses who made her comfortable and happy.  She snuggled A LOT.  She showed amazing strength.  God watched over her and protected her.  God was all around us in the loving support of my “people” who checked in on both of us multiple times every day.  We felt God’s presence when we needed the peace and comfort from our fear and exhaustion.  We saw God’s healing power as she quickly improved.  Yes, she was down for a week and is still dealing with the fatigue and pain from her joint flair, but she honestly recovered so much more quickly that I was expecting.  For that I am thankful to God for His healing touch.

We had the 2 week follow up on her eye, the adhesion has improved but is not completely resolved.  We are finishing up the second week of a stronger dilation drop and steroid and are hopeful that at her follow up this week her eye is completely cleared up from the adhesion and inflammation.

We go to Iowa City to see her Rheumatologist the week after next and are preparing for another medication change if her eye hasn’t cleared up.  We are preparing for her to under go general anesthesia the same week in order for her GI doctor go scope her and try to determine the cause of her GI troubles.  They will be checking and testing her for Inflammatory Bowel Disease, Crohn’s Disease, and Celiac Disease.

We are praying for all good news in the next two weeks.  They say that April showers bring May flowers.  We are hopeful that the storm and showers we experienced in April, produce the good news and blessings of May flowers!April Showers