Juvenile Arthritis Awareness Month: Part 2- Being a college student with JRA

Transitioning to college can be challenging enough. However, having JRA during college adds many more challenges. There are many factors to consider when choosing the right college to attend such as is it a small campus or large campus with shuttles, is there a responsive disability center, are the dorms and buildings accessible and is it close to doctors and health services.

My friends carrying me while
simultaneously tying my shoes!

I attended Boston University for many of these reasons. It was a flat campus, close to all of my doctors and had very accessible buildings. Although, BU had a large campus there were many shuttles and public transportation options to help me maneuver the campus. Despite all of this, college can still be challenging. As a result of the stress of living in a new environment, not-stellar eating habits, late nights studying and much, much more walking, I battled continuous flares, 3 surgeries and constant treatment changes during college. 

However, I made it through with not one, but two degrees (a BS and a MS in occupational therapy) and I learned some tips along the way.

1. Pick the right college for you: As I mentioned BU was a huge campus, however, it worked for me because it had public transportation as well as school transportation options to help with my mobility. Some people may opt for a smaller campus where you only have one building to walk to. 
2. Make the connection with the school's disability service right away: BU had a lot of disability services to offer, but there were lots of steps to take to get anything done and it was often frustrating and time consuming. I learned how to advocate for myself better during this period. A smaller school may not have a disability office but you may be able to talk directly with your professors about accommodations. 
3. PACE yourself: This was one of the most important aspects of managing my JRA at college but also one of the hardest things to do. As a college student, you don't want to miss out on any experience but I often end up paying for busy weekends, with days not wanting to leave my bed.
4. Adapt and Accommodate: If you are like me and can't pace yourself, learn ways to still enjoy all of your college experiences but with accommodations. For example, my friends would often walk over 2 miles to attend parties (in order to save precious subway money), however I knew if I spent my energy walking, I'd have no energy left to party. I frequently took the subway, cabs or school shuttles to meet them in order to save my energy for the night. I also used a wheelchair (while on spring break in Disney) because I knew there was no way I would be able to keep up and saved my energy to enjoy my vacation.

   

   In Disney on spring break, a wheelchair
   was necessary to pace myself 

5. Don't be afraid to say no: By the time I was an upperclassman, I learned that I would rather have friends to my apartment (even if I had to bribe them with wine and food), so I could have a comfortable place to sit all night long but still be with my friends.
6. Be open and honest to your friends: My friends were wonderful and tried to accommodate and help me as much as possible.  They would even carry me if I was desperate! I was always honest to them when I was really hurting and they learned a lot about JRA as well.
7. Don't be afraid to ask for help: One of the best ways I relieved stress and decreased my joint pain was to take baths. However, wanting to take a bath in my apartment meant cleaning the tub. After a long day of classes, that was the last thing I had the energy for. Luckily, I had an amazing roommate and friend and on one particularly achy day, I asked her to clean the tub for me and she did! 
8. Sometimes it sucks: My last point is somewhat hard to read, however, there were definitely nights when I felt left out, was flaring badly in pain, lonely or just felt bummed that I had JRA while in college. It's ok to have nights where you binge watch Sex and The City (eek, I feel old now) and some of your friends may even enjoy the excuse to stay in on a Friday night and join you. However, all experiences (whether they are good or bad) help define who you are as a person and who you become. 

College with JRA can be hard, but it doesn't have to be impossible. I loved my college experience, even though my it was one of the hardest times to manage my JRA. I learned a lot about myself as a person, I learned how to manage my JRA better and I learned how to totally disregard everything and just be a college student. JRA be damned! Whatever your experience ends up being, make sure to make the most of it.

My all time favorite Patriot player, Teddy Bruschi, was doing a
book signing, 1 week after I had knee surgery. The line was over an hour
long, but I brought my crutches to wait to meet him! 

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.

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!

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...