Juvenile Arthritis Awareness Month: Part 1- Being a kid with JRA

July is Juvenile Arthritis Awareness Month! Instead of listing facts and statistics about the disease, I've decided to write each week about what it meant for me to grow up with JRA and delve a little more into my experiences with this disease.

Swinging with swollen knees
at five years old

I was diagnosed with JRA at 13 months old and do not know a life that has not been impacted by this disease. My childhood was filled with therapist visits, doctors appointments, pool therapy and frequent medication changes. I wore bi-valved casts on both my legs, every night when sleeping, to prevent my knees from contracting in a flexed position. Twenty-seven years ago they did not have colorful casting plaster and we would decorate my leg splints with stickers. I remember when they finally offered colors and I would always get red and green splints around Christmas time! I also often wore resting wrist splints to prevent contractures in my wrists. As a result I was unable to independently remove my leg splints in the middle of the night and would wobble with splints on, perfecting the mummy walk, to make it to the bathroom. Despite these measures, I would still wake up sore and achy with morning stiffness and I took frequent baths before school, in order to loosen up my joints and make the school day more manageable.

Being a pirate for Halloween to make
use of having to wear an eye patch.

Further complicating my childhood, I had cataract extraction surgery at 5 and 6 years old as a result of persistent Uveitis inflammation, and this resulting in requiring my mother to put in my contact lenses at 5 years old. This made sleep overs and play dates somewhat challenging. However, my mother would always sneak in and help me remove my contact lenses and then come back the next morning to put them back in, being as inconspicuous as possible, so I could still enjoy those slumber party experiences. My parents were always adaptive and creative, making the best out of lousy situations. One of my cataract surgeries occurred around Halloween and I had to wear an eye guard for protection for about a month. In order to still allow me to participate in trick or treating, I was a Pirate that year!

As a result of my many therapy appointments, I did end up missing out on some childhood experiences due to scheduling issues and physical limitations, however I was able to try many unique adaptive activities such as horseback riding, karate and adaptive skiing. Adaptive skiing bNew England Disabled Sports Program and I will most certainly talk about this again in the future. Life as a child with JRA can be challenging. A child's life should be filled with play and fun and not doctors appointments and needles. However, I have met some of the bravest, most courageous children with JRA who are able to always find the joy and laughter in their lives despite the challenges JRA throws at them.
ecame a huge part of my life as my family and I headed up to New Hampshire every weekend to be able to participate in a family activity together. We all became actively involved in the

If you know someone or have a personal story of your life as a child with JRA, email me allgrownupwithjra@gmail.com to be featured on my blog this month.

The Eye Ultrasound (and other strange medical tests)

This morning I had a follow-up eye doctors appointment. I have been seeing a retina specialist for about two years to follow a cyst in my right eye. Initially the discovery of this eye cyst was very unnerving because they were unsure of it's origin or pathology.  However, it seems that somehow the cyst is in the perfect place, between all the important eye structures and my glaucoma tube shunt implant. And as long as it remains there, happily not bothering anyone, no one seems overly concerned anymore. As a result, every 6 months I visit this specialist and have two eye tests done, photographs of the inner parts of my eye and an eye ultrasound. When I first heard I needed an ultrasound, I thought "wait, how does examining my stomach tell you anything about my eye?" There are indeed a ton of different types of ultrasounds and ways to use ultrasounds. Physical and occupational therapist often use ultrasounds to provide deep heat to joints, muscles and tissues. An eye ultrasound is not a painful test but it continues to be one of the strangest sensations I experience. I am by no means uncomfortable with eye drops or touching my eyes. I have worn contact lenses since 5 years old, used eye drops since before then and have had four eye surgeries. However, this test is still very strange! First, they use numbing eye drops to make your eyes more comfortable. Then they use an ultrasound stylus with ultrasound gel on it and rub it all over your eyeball, taking pictures in certain spots. It feels as awkward as it sounds. There is cool gel being rubbed onto and all over your eyeball, your vision is blurry and sometimes you enjoy the pleasant experience of cool ultrasound gel running down your cheek. Fortunately, the test is over quickly and you can move on to more pleasant tests..

My second least favorite medical test is the visual field eye exam. As a result of my glaucoma I need this test every 6 months to make sure that my visual field (the amount you can see in the periphery when your eye is focused on a point centrally) is stable. For this test you close one eye and place your head inside a giant circular bubble. These bubbles remind me of the chairs Will Smith sits in during
Men In Black. Then they flash small bright dots in various directions inside this bubble and you click a pen every time you see a dot of light. Testing each eye can take up to 5 minutes but it often feels a lot longer. I once made the horrible mistake of scheduling one of these tests the day after St. Patrick's Day while I was in college. I had gone out the night before and was not feeling myself the next morning (read: extremely hungover). This may have been the worst possible test to take hungover as every flashing light made me feel nauseous, my eyes were tired and dry and I am sure I missed seeing many lights that day. I will never make that mistake again.

The Lack of Spontaneity

I have always been a planner and organizer. Crossing items out on a to do list is gratifying and rewarding. I live by my google calenders and have post-it notes everywhere. However, it's hard to tell how much of this is my personality and how much of this has been a product of my JRA. Keeping track of at least 6 different specialists, from different hospitals with different clinic days, requires a good organizational system. Remembering when to take pills each day and eye drops as frequently as every four hours, requires consistent and successful planning.

However, I feel like I have missed out on the ability to be spontaneous throughout my life. I had contact lenses at five years old due to my Uveitis and as a result any overnight school trips or friend slumber parties required more planning than my peers. My mother would often drive to my friends house, remove my contact lenses and then come back the next morning to put them in (being as inconspicuous as possible) so I could still experience those childhood memories. Even as I entered college and I was independent in all my healthcare needs, my life still lacked the spontaneity that my friends enjoyed. I could never "crash" on a friends couch  and walk home the next day (not that I ever wanted to!). If there was ever a chance I wouldn't be coming home that night, I would "plan" to be spontaneous and pack the smallest bag possible with back up contact lens solution, glasses and eye drops. I often carried a Marry Poppins type purse filled with re-wetting eye drops, purel, spare contact lenses, contact cases, contact solutions, advil, icy hot and medications.

Still to this day, I often wish I could just fall asleep on the couch and wake up the next morning but I have a nightly routine of 6 eye drops that need to be applied a few minutes apart. I call this nightly ritual "the process" and it has just become a part my normal routine. Even though the days of spontaneously crashing on friends couches are over, I still long for the ability to have a little more carefree impulsiveness in my life...

Climbing Mt. Everest

Yesterday I watched a TV show on Iraqi war amputees who were climbing the 7 highest mountain peaks to help them rehab emotionally and physically. Every step was a struggle but they eventually all made it. I often feel like I am climbing Mt. Everest and especially today every step felt like a struggle. 

I've been lucky to have some amazing doctors who treat me as a person and not a condition. Today though as I met with my glaucoma* doctor, I felt like he only saw my eye. As I began to inquire about my goals for a family in the future and the medication management required, his demeanor became grim. "Well...some people do great with improved glaucoma, and some people have a horrible, out of control eye disease" Fabulous, thanks for the boost of confidence. As a clinician myself, I often get asked questions about predicting the future. "Will my child grow out of Autism?" "Is he ever going to be able to pay attention in school?" And like my doctor, I can't predict the future for them and he can't predict my disease progression. However, how a clinician presents negative, uncertain or scary news makes such a huge difference in the patient's outlook and perhaps even their disease progression. One giant fall down the mountain...

Luckily, I do have an amazing ophthalmologist who agreed to see me the same day to check on my eye disease. She eased my fears and said my eyes were clear. She could sense my anxiety and stress about planning for a family in the future. We discussed how 50 percent of medicine is science and knowledge and the other 50 percent is relating to patients, appreciating their goals and easing their concerns. This is why this doctor rocks! I left my second appointment of the day in a much better place. Still terrified about what the future may hold, but optimistic. Climbing back up that mountain towards the peak...

And to further ease my stressful day, my amazing husband food shopped and cooked dinner so I could have a stress relieving bath. I do think with the support of my husband and family, I will be able to make it up that mountain, one step at a time, overcoming every storm and set-back in the way.

*Background Eye Information: My JRA caused Uveitis (inflammation of the uvea in the eye). It has been a constant struggle to control and the most effective treatment personally has been Prednisone eye drops, which unfortunately overtime can cause increased eye pressure leading to glaucoma. As a result I have had surgical interventions to control my glaucoma and am followed closely.