Chronic Life

Input overload. There are so many remedies, diets, methodologies and good meaning people with their unsolicited advice. At the beginning of this journey, I often felt overwhelmed. With all of this input, I felt challenged to navigate what was best for me. 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 NW Outward Bound 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 on my outdoor lifestyle and career. I not only climbed Denali but went onto climbing and guiding in the Himalayas. There were mornings that I felt like Tin Man on the Wizard of Oz lubing up the joints. Years, later, I am thriving. Life is good. I feel grateful. In some crazy way, RA has shaped who I am today. 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.

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.

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 share information. I know there are forums out there. What has been missing for me are the stories of those overcoming their challenges, not giving up and 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 learned about the history of western medicine and the progression of drugs used for treating RA as well as experiencing another person’s life with RA.

On my bucket list, I have always wanted to do some form of public education or public awareness project about RA. When I was guiding trips in the Himalayas, I thought I’d organize a Himalayan Peak climb, like Cho Oyu (26,000+), to fundraise for a foundation or something. More recently, I thought I ‘d do some epic solo sea kayak expedition, but have people join me along the way, to raise funds and public awareness. May happen yet! Baja? Until then, I have begun this blog to write, and get my voice out there to use as a tool. I hope others add their voices here!

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. Seldom people are comfortable asking about 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. Today, I begin this blog to shine more light on RA and hopefully educate folks along the way.

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.

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.

Take care.

Research/Resource links:

  1. Rheumatology Research Foundation
  2. Arthritis National Research Foundation
  3. What is RA ? Click HERE
  4. Best RA Forums by Healthline, Click HERE.