Chronic Life

It has been one big experiment since 1983 when I was diagnosed with Rheumatoid Arthritis (RA) at age 23. I was just launching my career as a mountaineering instructor with the NW Outward Bound School and had sights on climbing Mt. McKinley (Denali). I didn’t listen to the doctors saying that I had to give those dreams up to adopt a sedentary life style. I had to walk through a lot of pain to continue my outdoor lifestyle and career. I not only climbed Denali but went onto climbing and guiding in the Himalayas.

There have been plenty of mornings that I have felt like Tin Man on the Wizard of Oz lubing up my joints with a dose of positive attitude to go forth and move through the pain somehow. Years, later, I am thriving. Life is good. I feel grateful. I still have to manage my “disease” but I am more at peace with it. I haven’t let RA define me and put me in a box. That said, RA has shaped who I am today in becoming a more compassionate person. I understand working with pain and that suffering is a shared human experience. Everyone suffers and deals with pain. RA has been an important teacher. For anyone who has been diagnosed recently with RA or any chronic illness, my message to you is don’t give up! Your life is not over. What is ahead of you is a intensive study in self care and learning about your body. Click on your growth mindset.

Input overload. So many remedies, diets, methodologies and conflicting information bombard us. In, addition, there are also people with good intentions who quickly offer their unsolicited advice. At the beginning, I often felt overwhelmed. With all of this input, I felt challenged to navigate what was best for me. It has been a journey to find what works for me regarding the management of inflammation and taming the autoimmune system, the root cause of my pain. RA has affected mostly my hands and feet. More recently, last two years, I have had two episodes of inflammation on my cornea which is freaky and lasted for 8 weeks each time. Today, I live relatively pain-free. I believe that the following practices has served me well: 1) Eating a healthy diet and staying active; 2) Listening to my body; 3) Finding other venues such as acupuncture, yoga and massage to control inflammation, calm the mind and reduce stress; 3) lastly, after many years of resistance, I have found that western medicine has its place in my picture of health. I currently take a weekly injection of Ebrel.

By now, in my life, my hands are the first thing people notice that are different. They look pretty gnarly, like an ape’s hand, but still are fully functional. Many times people think my gnarled hands are a result from my climbing days or an old injury. Seldom people are comfortable asking about the story of my hands. I always appreciate those who do ask me instead of making assumptions. I have found most people when they realize I have RA, their response is , “yeah my grandmother has arthritis”. And, I am like, “no it is not the same thing, though related, that we both experience pain”. Then, I emphasize the role of the immune system triggering the inflammation. The fact is 1.3 million Americans live with RA, according to Healthline. Women are at a higher risk to get RA than men. There is very little research respectively going towards curing chronic disease. My theory is that since it doesn’t kill us so immediately as say cancer, money and interest for research continues to be low priority. Our imperfections have their stories.

To date, I have not brought much attention publicly or even privately about my RA. I have just carried on as anyone else, setting goals and living dreams. I found when I have shared this part of me, especially in the context of an athlete, I have found people expect less from me in terms of performance, skill and ability. So, I kept it on the down low until people get to know me. Certainly, when someone asks me directly, I am open to talking about it and answer questions. There is a kind of taboo in this culture to be direct in asking personal questions that have to do with pain and suffering. We all experience pain and suffering in some form during our lives. I think it is healthy to share those struggles. Brings us closer and more connected.

One of my aspiration is to give voice to the community of people who live with Rheumatoid Arthritis. Talk story. Share our successes, challenges and empowering information. I know there are forums and Facebook groups out there but I have not seen much that is positive and hopeful. What has been missing for me are the stories of those overcoming their challenges, living an active healthy life, a kind of celebration, in spite of the odds. One book that I recommend is entitled, “Out of Joint”, a personal and public story of arthritis, by Mary Felstiner. I appreciated her detailed coverage of the progression of drugs used for treating her RA.  It was also the first and only book I have read about another person living with RA. I don’t know that many people personally who have RA. I would like to hear your story of inspiration. Please contact me. I will do some blogs spotlighting your story. I have begun this blog to get my stories out there. I hope to add your voice here if you have a story that will inspire. This blog is to shine more positive light on RA and hopefully shine light along the way.

I support everyone to thrive and not just survive especially those of us who deal with chronic illness. The truth is many people have a disability, hidden or obvious. We are all vulnerable. Self care and thriving relates to us all, as does, following our dreams.

If you have ideas and thoughts on any of the above, I would love to hear from you. Comments are welcome! Thank you for taking the time to read this page.

Please join my Facebook group page by clicking here, RA Athlete-It’s about Thriving.