To tell or not to tell...

This topic has been something that I have struggled with internally for many years, but have not been able to put into words until recently. I always knew I wanted a career in healthcare since a young child. Having to deal with doctors, therapists and medical professionals my entire life, I felt comfortable in that setting and wanted to help others in a similar way. For a variety of reasons my education and experience led me to choose occupational therapy as a career. I wanted to be able help the entire person, family or child, both physically and emotionally, to help them enjoy their lives.

Which is why it is ironic that I find it stressful and am unsure of how to discuss my Arthritis with my employers. I have had a handful of jobs since earning my degree and I currently work for 3 different companies. One employer knows a small amount about my JRA, enough to be flexible with my schedule and caseload when needed. Another employer knows nothing about my JRA, because it has never conflicted with my employment or work performance in that setting. And the third is a new position and I have not discussed it yet. Legally I know that I can not be discriminated against as a result of my JRA but does that really stop prospective employers initial reactions and thoughts? Even working in the healthcare field, I worry that employers will anticipate extra time off, see physical limitations or have reservations about hiring someone with potential health problems. As a result of these concerns, I almost never mention my JRA to employers in my interview and I wait until I demonstrate my therapeutic skills or build a rapport with my supervisor before I discuss it. Which is a shame! Because I do think that having JRA helps make me more empathetic towards my patients and hopefully a better therapist. 

I am not sure if my feelings on this matter will change as my career and work experience grows, or if this is just one of society's unfortunate stigmas that may never change. I have been fortunate to choose a career that I enjoy and can be flexible, as well as have employers who are understanding. However, I know for some people with RA, this isn't the case and they battle with the balance of working and managing their illness every day. I know I am fortunate to be where I am now and I am hopeful that I will continue to be able to find that balance of work and life in the future. 

Inflammatory Diets?

Let me start by saying that I could eat an ice cream sundae every night and never get tired of it. I need to hide candy bars from myself or I will eat the whole bar in one sitting (72% dark chocolate with a hint of sea salt). I have been called a whoopie pie connoisseur. I would like to be a contestant on cupcake wars in another life. I am currently eating one of the 4 mint Oreo cookies (truly addicting and yummy!), that I had for dessert tonight. So as a result I never would have thought I would be thinking about any kind of "RA diet."

I am also very fortunate to have been blessed with a fantastic metabolism and I have never had to worry about my weight. I can often eat what ever I like, in any amount, and my weight stays relatively stable. I often have thought that this has been my little health "freebie" since I have many other health issues to worry about. However, at this juncture in my life I would like to be on the minimal amount of medication possible to control my disease. And as I sit here after having achy knees all day, I find myself considering trying an "RA diet." 

Honestly, I have often been told to "Cut all dairy, it cured me!" "You really need to not eat gluten," or "eat these five foods and all your pain will go away." I have always dismissed these suggestions quickly. I know for many people these various diets have worked wonders and that is great! But, I personally have always thought if cutting dairy cures RA, then everyone would be doing it and I wouldn't have tried the 20+ medications I have in my life. Plus, what would I do without my ice cream sundaes! 

I still have a lot of research and experimenting to do. Do I just cut dairy or gluten or both? Do I try an inflammation diet such as Dr. Weil or another nutritionist. I am not sure what will work best for me or how long this experiment will last, but it is definitely worth a try!

And as a parting thought:

I will still find a way to enjoy my ice cream!

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.

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...