JRA

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.
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2 thoughts on “Climbing Mt. Everest

  1. What a great analogy! Sometimes having RA does feel like climbing a mountain–unfortunately, Sisyphus comes to mind, for me. I like your outlook better. And I agree entirely that how your doctor presents information and answers questions can make a huge difference. I'm lucky enough to have a rheumatologist who is invariably kind, thorough, and takes the time to listen.

    I was thinking about your search for other young adults with RA who want to start families, etc. Check out From This Point. Forward by Mariah Leach. She just had her second little boy, and she's focused her blog on the adventures involved with meds, becoming pregnant, her pregnancies, and how she's managing today with two small children–all while dealing with RA pain and fatigue. Amazing woman and RA patient advocate. Read her at http://www.fromthispointforward.com/ .

    Hugs to you!

    Like

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