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.

Follow me on the Twitter!

I have finally joined the twitter! Follow me @grownupwithJRA. There has been a fantastic #chroniclife movement on twitter and although I am late to the game, I thought I would start my new twitter account by tweeting every time my JRA affects my life for the rest of the day/night. The #chroniclife movement is about promoting awareness about how chronic, invisible illnesses affect people's lives so frequently throughout their daily lives. 

Follow @grownupwithJRA

Seventeen Stitches to the Sunshine State

At around 11:30 AM on Saturday morning, about 6 hours before I needed to be at the airport to catch a plane for a much needed week vacation in the Florida sun, I was washing dishes in the sink. This particular morning I was washing a rather large, glass salad bowl. As I turned the glass bowl over to wipe it dry, it slipped and fell into the drying rack, shattering into many large and small pieces. One such piece sliced directly into the palm of my left hand. As soon as I felt the sharp, stinging burn of the cut and saw the gaping wound in my left hand, I knew I was in trouble and immediately went to "The Bad Place." I grabbed paper towels and applied pressure without investigating it much further and immediately called for help. As I waited for my father and husband to come pick me up, I tried to distract myself from the pain by catching up on my fellow RA bloggers, just hoping that I wouldn't pass out alone in my apartment. 

An hour later I had arrived at the ER, was checked in and was waiting for the Physician Assistant to examine my injured hand. Every nurse and technician who entered, greeted me by saying "I heard you did a good job on your hand." Fortunately, like most things in life, it could have been a lot worse! Apparently, if you have to slice your hand, I picked the best spot to do it. I missed any arteries or tendons and was still able to move and feel all my fingers. Seventeen stitches and 10cc of lidocaine later, I was stitched up and discharged. With amazingly 3 hours to go before our plane for Florida departed.

My hand is by no means healed. The cut wraps around from the side of my hand to the bottom corner of my palm. It is black and blue all over and numb around the wound. Currently it looks like a shark took a bite out of my hand and that may be the story I tell to my forever curious pediatric patients when I can return to work. However, I was still able to make my flight to Florida and lying on a beach is nice place to build skin cells!

New Blogger Alert

I would like to share a new blogger.  Anna, just launched her blog, Six Hips and Counting, last week and it is already fabulous. I met Anna many years ago when we both attended a camp for children with Juvenile Rheumatoid Arthritis in Vermont, Camp Dartmouth-Hitchcock. Her mantra of being "Stronger Than RA" is inspiring to us all!

Please check it out!

My Quest for the Perfect Yoga Studio: Part One

I am a beginning level Yoga student. No, I am more like a "fair weather yoga sports fan." I have tried a variety of yoga classes including classes at a gym, classes in a yoga studio, classes watching a DVD and classes by private instructors. It always starts out really well and then a variety of things happen... Either the class progresses too quickly and I can't keep up with the poses, I push myself too hard and end up straining myself, the class is too slow and not challenging enough, or I have a difficult time modifying the poses to accommodate my range of motion limitations and there is not enough individual attention to assist me.

However, I have become "fluffy" over the long, hard winter and most definitely need to get back into an exercise routine. Watching the snow pile up as I dunked mint oreos in hot coca probably did not help my physique. I decided I need to do something before bathing suit season commences. I researched yoga classes in the area and picked the closet one to try first. I emailed the instructor and asked how vigorous the class is and if it would be appropriate for knees with decreased range of motion. The instructor promptly responded and reported that the class is very gentle and most of the students have injuries they are healing from. I thought "Perfect!"

I did enjoy the class and the teacher was very nice and receptive. She made sure to check in with me to see if I needed any modifications. However, the class was very gentle and felt more like stretching and mediation. I also was the youngest person by at least 15 years. I am very accustomed to being the youngest person at the eye doctors, the youngest person in the Arthritis clinic and the youngest person with a aarp card, however, I was hoping I wouldn't be the youngest person in the yoga class. Although, I think this class will be a nice meditation and relaxation class, I am going to keep searching to find the right class.

Tomorrow is yoga studio #2 of the week...