Running underwater

Everything about this nasty disease just sucks.  Every time we do blood work we hope to see a normal white blood cell count.  It has not been normal in over a year.  That is in fact how this all started, high white blood cell count.  So every other Monday we find ourselves a bit disappointed and just feeling as if we have no idea what to do.  I even asked her Rheumatologist if we can just consider high her new normal and was reminded that high is not good and not a new normal.  So each appointment we add a new medicine or increase an existing one.  This last time we increased the cyclosporine, a potent immunosuppressive agent. 

With all that has happened this past year we watch carefully for any changes.  So far Emily has improved so much health wise and emotionally.  The rash has not been around at all and she hasn't had a fever in a year.  She is happy and off physical therapy completely, although we continue with water therapy to keep her joints moving and help increase strength.

In the past few months we have noticed a decline in school.  She is only in kindergarten and since her birthday is at the end of the year she is one of the older children in the class by virtue of missing the cut-off date to enroll.  I just happened to mention this to the Rheumatologist because I know inflammation can occur in the brain and at her onset she had an episode of night vomiting, a symptom of pressure in the brain, and Vasculitis (inflammation of blood vessels) is a constant plague.  When I mentioned it the doctor replied immediately that yes this nasty disease could cause learning disabilities, but to find out if that is the case we'll have to do more testing and that can cost up to $5,000 because it is not covered by insurance, even our great insurance. 

So, since the brain is a muscle we are going to start getting Emily to exercise her brain more.  If she tells us she wants to learn something, she asked if she could learn Spanish, we say yes and so she is going to her first Spanish class after school tomorrow.  We don't know how well it will work out, but just like teaching her how to exercise her joints without hurting them we've now got to teach her how to work around any learning difficulties she may have.

There is just so much nastiness to this disease that such a short time ago we didn't know even existed.  Have you ever had a dream where you are trying so hard to run fast and you can barely move as if you are trying to run underwater? That is how we are feeling right now; but we shall keep pressing forward and do whatever we can to tell everything that children get arthritis too and they need a cure!

Happiness

After Emily was discharged from the hospital she was sad.  She couldn't do things she could before she was sick.  She was so weak walking was difficult and she couldn't jump or run at all.  I was so worried she would hate life.

I remember overhearing someone say they would commit suicide if they got fat and lost their hair due to another similar disease and all I could think about was what if that is how Emily feels.

I am very happy to report she has been her happy self since I got home from my last work trip.  She is running, smiling, laughing, jumping and playing like she used to.  She might be a little slower and not as strong as before, but she doesn't seem to even notice it any more. 

As a parent I decided if I could teach my children to love life I would have done a good job.  It's still my hope that in spite of infusions and doctor visits and steroids and arthritis Emily will love life and find joy.

My Emily

Last week I took Emily to get her haircut.  As she watched her reflection in the mirror I felt like I could see pain on her face.  She was not happy with the way she looked.  Later that day she asked me if her face would ever look the way it did before she got sick.  The swelling is what I consider severe, but we can't get it to go down until we get off all of the steroids.  With 7ml still each day getting to 0 seems like an eternity away.

We have had to be mindful of her self image now.  We no longer tell her she is a big girl, we say she is growing up.  I like to tell her how wonderful motherhood and marriage is, but now I just talk about marriage.  I realize that these treatments are so new and so life altering they may very well take away her ability to ever have biological children and I have no doubt that may be very painful for her one day.

The doctor seems to feel that it's ok for kids to be on the medicine because they aren't aware of how it changes them physically, but Emily is very aware and an intelligent child.  I wish we had a doctor who had a child dealing with this,  not because I wish it on someone else, but because there are so many daily living aspects to this disease that the doctors just don't get; such as the physical appearance and extreme exhaustion.

See, the thing is; you don't really understand what it's like until you live with the disease.  None of us understand except Emily.  You really can't fully understand what it's like to parent a child with a chronic illness until you have one. 

My list

I now have a list of things that increasingly frustrate me.

Never say to a JIA parent:
1. It's just arthritis.  - Are you freaking kidding me?  My daughter can barely walk, can't go up steps and can't get up after sitting on the floor.  It is not "just" Arthritis.  It is an Autoimmune Disease that is devastating my child's entire body.

2. It's not a disability. - See above.

3.  She's perfectly normal. - See above.

4. Oh, so she has osteoarthritis.  No, no she does  not.  If you are confused google Still's Disease, that's an AKA for this nasty disease and will possible explain things better to you.

5. Have you tried probiotics? - I can't even think of a neutral response for this one so I kept my mouth closed.  There is no cure for Juvenile Arthritis of any variety, do not give helpful tips to parents who know more about this disease then most doctors. If there was anything that could help I gaurantee I would be investing in stock in the company that made that wonder drug.

Never do:
1. Stare. - Why do people, especially adults, insist on staring at my sweet girl.  Yesterday, after leaving the doctor's office, Emily was discussing her disease and this elderly woman heard our coversation and bagan gauking at my daughter.  Serriously this woman followed us through the parking lot staring until we went our seperate was.

Systemic Onset Juvenile Idiopathic Arthritis

On March 2nd, 2012 a simple name turned our world upside down.  Our sweet five year old went from happy, healthy and active

to this:

Systemic Onset Juvenile Idiopathic Arthritis was the diagnosis.  This after four weeks of fever and rash that included two weeks in a hospital admitted for "fever of unknown origin". 

She never complained of any joint pain.  She had never been in the hospital (except when she was born) before and we had never had such an ill child to care for.

In all she was in the hospital for 57 days.  Spent two weeks of that in the Intensive Care Unit, received 11 x-rays, 6 ultrasounds, a PET CT scan, a spinal tap, a bone marrow biopsy, daily blood tests for one month, four IVs, had a PICC line placed, wore a NG tube for two days, underwent one blood transfusion and left the hospital with four new medications one of which is a daily, painful, subdermal injection.

As a parent there is no way to prepare.  This does not run in either extended family.  This is not cancer.  There is no cure.

Before SOJIA my daughter loved going to the playground.  Yesterday I took her to the playground after being out of the hospital for a week.  I thought watching other children play would motivate her to play.  She couldn't climb up the stairs to the slide.  She could barely peddle the tricycle around and couldn't do it without help.  She spent most of her time in the infant swing watching other children play.  I don't know if she yearned to play with them, but I know I yearned for her to play with them.

Systemic Onset Juvenile Idiopathic Arthritis

AKA: Still's Disease

AKA: Juvenile Rhumetoid Arthritis 

Three names that mean the same to us a future forever changed.

Thank you for visiting our story.  We hope to raise awareness about this and look forward to a cure someday.