"So I have JRA..."

I recently booked a weekend away in October for my one year wedding anniversary! It's a strange feeling where it seems like just yesterday I was walking down that aisle, but at the same time it feels like we have been married for ages already. This milestone has caused me to reflect on how fortunate I was to find a supportive, caring and understanding partner when I was just seventeen years old.

Prior to meeting my husband, I dated on and off but struggled to find someone who understood the balance of helping me when I needed it, but not pitying me all the time. Some boyfriends went too far in helping me and made me feel like I was incapable of doing anything without assistance, while others seemed to be in denial that I had any limitations at all. Thankfully, my husband seemed "to get it" from the beginning. I still remember the day I told him I had JRA. We were kayaking together with a bunch a friends and were momentarily alone from the rest of the group. I had been wanting to tell him for a while, I wanted him to know before Junior Prom of course! I remember feeling so anxious about this disclosure and how he would react. I nervously said, "So I have JRA.." "Ok" He said. "Do you know what that means?" I responded. "Yeah" he said. And that was about the extent of our conversation! Granted we were only in high school and I am not sure either of us knew what that meant for our future together, but I was relieved that my JRA was a "non-issue" in our relationship. Now of course, having JRA has caused us to face some unique challenges together and our marriage has only just begun, but it has never stopped us from having the life we imagined 10 years ago as teenagers. However, I know that I am fortunate in finding my husband and this is not always the case.

As a result this post is dedicated to all the husbands, wives, friends, sisters, brothers, parents and caregivers who have supported those of us with JRA. Who have pushed us to complete our goals despite our limitations. Who have not accepted having JRA as an excuse for overcoming any challenge or obstacle that may lie in our paths. Who have rubbed our sore knees, massaged our swollen wrists and administered our injectable medications. Who have laughed with us, cried with us and carried us. We thank you...

Arthritis National Research Article

I recently had the pleasure of spending a weekend with my adorable 3 month old nephew. Many of my cousins, friends and co-workers have also just had babies or are pregnant. Of course all of the cuteness around me has led me to think about my future baby plans as well. Unfortunately, family planning for a woman with JRA can be more complicated then the typical woman. Many medications need to be stopped 6 months to one year in advance and there are few medical treatment options that have been researched to be safe during pregnancy. Some women experience a remission (or decrease in symptoms) of their RA during pregnancy while others do not.

There have been many times in my life where I have heard that there is not enough research on treatments or long-term effects of JRA or Uveitis. As a child with JRA,  my family often had to balance the risks of unknown medication side effects with improved quality of life and decreased joint damage. There is still not enough research about effective Uveitis treatments. However, I find the lack of research about JRA during pregnancy the most unsettling. JRA affects over 300,000 children, the majority of these young girls. These girls are going to eventually be "All Grown Up" one day soon and will need to make difficult decisions about their medical treatment and decision to have a family with limited research to help guide them.

As a result of this, I chose to be interviewed and share my experience, thoughts and concerns with the Arthritis National Research Foundation (ANRF). You can read my article here, Cure Arthritis Article. The ANRF's mission is to provide initial research funding to scientists with new ideas to cure Arthritis and related autoimmune disease. I hope that sharing my experience will raise awareness and lead to research in this area to help others make informed decisions about their future.

Hypochondriasis, a side effect of lifelong JRA or a result of "The Burden of Knowledge?"

JRA has many mysterious and overlapping symptoms. However, figuring out if your symptoms are related to your JRA, or just typical human being symptoms can be challenging. Having to decipher this puzzle of symptoms your entire life can lead you to become a hypochondriac.

I haven't always been a hypochondriac. I can imagine that my parents were pretty on top of any swollen joint, cough, cold, pain or symptom when I was child. When my knees were swollen we'd go see my doctor and usually determine my JRA was flaring and try a new medicine. When my eyes got blurry we would see my eye doctor and determine that my uveitis was flaring or during one scary weekend, determine my glaucoma was uncontrolled, leading to emergency eye surgery. When I was feverish and weak one day, I visited my PCP and learned that I had the flu. Recently I had SI joint pain, I thought it was from a fitness injury (that's what I get for getting in shape) but as it turns out there is inflammation around my SI joints, caused by who knows what. So you can see, typically in the past when I have had a gut feeling something was wrong, it usually was.

Compounding this precedence is my tendency to go to "the bad place," very quickly. I'm not sure if this is an Italian trait or just me being dramatic. But basically it works something like this... My puppy was lethargic and had a swollen stomach one night, and I went from thinking he had a stomach ache, to a bowel obstruction to a rare fatal dog disease called "Bloat" where their stomach twists in on itself. This happens frequently throughout my life; my husband doesn't answer his phone in an hour = he's been kidnapped or is passed out on the floor in a coma, I have stomach pain= I have an ulcer or appendicitis, I have an ingrown toe nail= my toe is going to get infected and cause total body sepsis. You get the point.

I was recently watching the T.V show Scrubs and it was an episode where the attending doctor, Dr. Cox (a very brash, frank, no BS kind of guy) had a baby and was over reacting about a cough. The pediatrician said to him that he has "The Burden of Knowledge," meaning he knows too much based on his profession and unless he "gets a handle on it" it will torture him. I feel like this is part of my problem. I have had too many personal experiences involving pain or illness leading to actual infection, inflammation or complication that I will forever be sticken with "The Burden of Knowledge."

However, I know I need to get a handle on this for the sake of any future children. With my developmental and clinical experiences as a pediatric occupational therapist, as well as my personal experiences with JRA, together with my husband's education as a nurse and nurse practitioner...our future children will stand no chance. Every developmental milestone they don't reach on time, or symptom that could result in a myriad of illness, I will go to "the bad place." So how do you rid your memory of a life of symptoms and years of studying and clinical experiences? I am not sure, but I am going to try to find out how...

All Grown Up?

What does it mean to be "grown up?"

According to the Merriam-Webster online dictionary "Grown Up" means:

1. grown–up adjective \ˈgrōn-ˌəp\

: no longer young : fully grown

: suitable for adults

: like an adult

 or

1: not childish or immature :  adult

2: of, for, or characteristic of adults <insisted on wearing grown–up clothes>

Hmm. Am I no longer young? Well technically at 28 years old I should developmentally by "fully grown." Am I like an adult? Well that will most definitely depend on the day and situation. Am I not childlish or immature? I definitely find myself childlish but this is a purposeful intent to continue to find the joy in life as a child would, and not per say act "childlish." Lastly, do I have the characteristic of an adult? Well, I support myself financially, I make my own life choices and I live independently. Does that make me an adult? Not sure. But enough semantics.

The title of my blog is all grown up with JRA. I was diagnosed with Juvenile Rheumatoid Arthritis at 13 months old. I have most definitely grown up with this disease. I grew up with countless doctor appointments, therapy appointments, medications, pain and surgeries. However, I also grew up with American Girl dolls, elementary school plays, homework assignments, beanie babies, teenage heartbreaks, SAT preparations, college experiences and many other life memories.

Recently I have made many steps in my life towards being "all grown up." I got married this fall. I got a puppy last spring. I got a new apartment and a new job. My husband started graduate school and our future started to become less foggy. It was at this point, as we started to ponder our goals for starting our own family, I realized I did not have many people to turn to with similar experiences. I found myself wondering, "Now what?" As a child with JRA, there are countless fabulous resources and networks for parents and children. As an adult (which means 40-100 in the RA world) there are many resources for exercises, medications and coping strategies. But I found little helpful information about the active, young adult with JRA. I found myself groping to find information on starting a family while having JRA, pregnancy, parenting and beyond.

That is what I hope to achieve during this blog. I hope to chronicle some of my experiences as I enter the next step towards being "all grown up with JRA." I have no idea where this blog will take me and I'm not sure if you can ever be "all grown up with JRA," but I hope to help others like myself find out...