Emily’s Story…Her Invisible Disease

INTERVIEW WITH A JRA WARRIOR

Juvenile Rheumatoid Arthritis ~ A type of arthritis that causes joint inflammation and stiffness for more than six weeks in children aged sixteen years or younger.  It affects approximately 50,000 in the United States alone.

I have been looking forward to introducing sweet Emily!  She is my niece and is also a JRA warrior!  I recently had the privilege of sitting down with her for a one on one interview.

Emily’s story is eye opening. Our “question and answer” session is as follows…

Q:  How old are you?

Emily:  13 years old.

Q:  At what age were you diagnosed with JRA?

Emily: 18 months old.

(Yes…you read that correctly!  This is a photo of her shortly before her JRA diagnosis.  The thought was that she had just hurt her ankle.)

Emily and her “poink” cast. That’s the color she wanted.

Q:  What is your first concrete memory that you knew you were different from your peers, or did you ever think that?

Emily:  My first memory was when I was in 1st grade and the teacher let me sit in a chair while the others sat on the carpet during our lesson.  It hurt to sit criss-cross applesauce.  Many of my peers began to ask why I had to sit in a chair and I had to explain, but they never understood.  I stopped explaining myself and said that I hurt my ankle.  

Q:  Do you share with your friends that you have JRA?  If so, what are their thoughts on the matter?

Emily:  I do share that I have JRA with my friends.  They are normally confused because some of their grandparents have it and they didn’t know people my age could suffer from this horrible disease.  They understand and know that sometimes I can’t do things they can do.  

(Many people think that JRA or RA is an “old person” disease.  That is not so!  It discriminates against no one.)

Q:  Are, or were you able to run, jump, and play?  If not, are or were you honest as to why, or did you find other “reasons”?

Emily:  I can still do some of that stuff.  It just depends on the situation…I mean I can, but it hurts and my ankle would be throbbing for the rest of the day and keep me up at night.  When I was in elementary school in P.E., they understood why I couldn’t, but still made me.  Now that I am in middle school, they still want me to, but if I just can’t, they don’t make me.

Q: Has anyone ever thought you were pretending to get out of doing something, or to just get attention?

Emily:  This actually happens very frequently…like when my friends ask me to go to the mall with them, or go to Hi-Wire.  Those are things I actually want to do, but I know I’ll be in pain and I don’t like complaining about it.  I’d rather not deal with the pain.  I’ve gone to Carowinds with my friends and walked non-stop and it really hurt, so now I have to sacrifice those places because of the pain.  

Q: Is your sleep ever affected?  Do you wake with pain suddenly and often?

Emily:  My sleep is affected but not that often.  It depends on how much walking I’ve done.  I used to wake up with pain during the school year and not be able to walk.  It hurt so bad, but I had to go to school because of the absences. (10 per year)

Q: Compare your good days to bad days.

Emily: My good days are just a little pain not really doing anything during the day. My bad days are after walking a lot causing both of my legs to throb.

Q: What parts of your body are affected most?

Emily:  Ankles and knees (right mostly)

Emily’s right ankle about four months ago during a flare.

Q: Is it constant or sporadic pain?

Emily:  Constant

Q: On a scale of 1-10, with 10 being the worst, what is your pain level on average?

Emily:  9

Q:  How often do you visit your rheumatologist?

Emily:  About every 6-8 weeks.

Q:  Does he or she feel you will eventually grow out of it, or have they ever mentioned that?

Emily:  I remember her saying that but now I don’t think she does.

Q: How many medications do you take?

Emily:  I take Humira injections once a week, and a cream called Hydrocortisone twice a day (morning and night).  If it doesn’t start working, I will have to take pills or Methotrexate.  

Q:  Do you experience days without pain?  If so, do you constantly wonder or worry when your next flare will be?

Emily:  I always have pain, but I could experience days with very little pain.  I don’t really worry about the flare up part though because it just doesn’t come to mind unless it happens.

Q:  Do you have any limitations where you cannot do something that your peers do with ease?

Emily:  I can’t do sports because of the constant reminder of pain.  If I didn’t have JRA, I would probably tumble, dance, and more things like my friends, but I just can’t do it.

Q:  Not knowing life without pain, do you consider yourself a happy person?

Emily:  I like to be as happy as possible and not really let people know how bad I’m feeling.  Sometimes that can be good, but I’ve learned that doctors don’t really like that because they want to know the truth in order to fix the problem. I know I’m still gonna hurt anyways.

Q:  Has your rheumatologist assigned you a severity level?  Mild, moderate, or severe?

Emily:  She hasn’t assigned a severity level because my pain changes a lot. Some days it’s mild but other days could be so severe, it’s just hard to get out of bed.

Q: Do you know any other people with JRA?  If not, would you like to meet some to share your story or do you prefer keeping it close?

Emily:  I’ve never met anyone and I kind of like to keep it to myself.

Q:  What are your future plans?  Your dreams?  Your goals?

Emily:  I want to become a vet who is a tenacious role model for her family and coworkers.  I want to be inspiring to people to reach their goals no matter what the obstacles are.

Emily also deals with TMJ which is an adverse effect from Juvenile Rheumatoid Arthritis.

**TMJ stands for Temporomandibular Joint.  They are the two joints connecting the jawbone to the skull.  These joints are a cohesive unit and cannot work independently from the other.

Emily suffers with this making it difficult to open her mouth.  Last year, she had injections in her jaw because the most she could open her mouth was enough to drink from a straw.

As with Rheumatoid Arthritis, JRA is also an autoimmune disorder where the body mistakenly identifies healthy cells as foreign.  The immune system which normally fights off harmful bacteria or viruses, begins attacking healthy cells and tissues.  The result is inflammation, marked by redness, heat, pain, and swelling.  It can also affect the heart, lungs, eyes, and nervous system.

Not ever really recalling a day without pain, Emily’s very early diagnosis would be her “normal”.  This is all she knows.

My daily chronic pain started at age 48, not 18 months old.  According to my calculations, I’ve lived roughly 17,532 healthy, pain free days.  (This includes leap years.)  Emily has recalled zero days without it!  This interview reminds me to be thankful for all of the healthy, pain free days I did have!

Heather is Emily’s mom.  She tells me that Emily is amazing.  Visits to her rheumatologist are very routine.  Currently, and even when she was much younger, she would simply hold her arm out for the nurse to draw her blood.  Heather says she’s never complained, nor even shed a tear.

Emily is a rising 8th grader.  She is a straight A student.  Since she cannot participate in cheerleading or dance, she has wisely chosen musical theater and honor choir.  She is also a BETA club member.  She is not one to allow JRA to rule her life.

You don’t have to be an adult to fight “adult” battles.  The type of pain Emily suffers is definitely not for sissies.  God bless you Emily!  Thank you for sitting down and opening up to allow us glance into the mind of a JRA warrior!

This blog post was a little different, but in the spirit of still including a verse from the King James Bible, I asked Emily if she had a favorite.  Without hesitation, this sweet and quiet soul, at the tender age of 13, gave me Isaiah 40:31 to leave with you.

The end of our interview left me with chills throughout my body, and tears in my eyes, so with that, who can’t say, “I’M GOOD, I’M GOOD!”  Think about it y’all.

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”  Isaiah 40:31  KJV (always)

 

If you wish to contact me with more questions for Emily, please leave them in comments and I will sit down with her for a follow up interview.