Every week my spouse, Andrea, gives me a shot of Enbrel to control my Rheumatoid Arthritis (RA). I hate the sharp pain of the needle going into my arm, wincing every time, and most times yelling, “Ouch” or even swearing! Moments later the stinging pain is gone. I thank Andrea, because for her, it is difficult to inflict pain on the one she loves. She suffers along with me. We have shared this weekly ritual for 14 years now.
I remind myself the short term pain is the trade off for a long term gain by controlling my inflammation. There are risks involved with each medication but for me, relatively speaking, Enbrel is a fairly low-risk choice. I am grateful that my body responds well to this medicine as I am able to live my life with fullness and able to pursue an athletic life. This April, I will race my outrigger canoe for a second time solo across the Pailolo Channel, a 26 mile crossing, in Hawaii. A week later, I will be paddling a relay race with a friend across the Kai’wi channel, 41 miles, known as one of the most challenging channel crossings in Hawaii. My body hasn’t always responded well to past medicines such as Gold, Plaquenil, Methotrexate that were prescribed to me. Nor have I taken the full advice of past doctors. During the past 35 years of living with RA, I have passed through stages of dealing with the diagnosis and have had to find my own path to wellness.
The raw truth about RA is that still to this day it is unknown as to what exactly triggers the immune system to attack itself. There are many theories and speculations but no silver bullet discovery leading to a cure for the disease that affects over 1.3 million people, mostly who are women. Since I was diagnosed at age 23, it has been one long experiment to find out how to control the symptom, inflammation, and to calm the immune system that gets triggered.
I understand RA affects each person in different ways and each person responds uniquely to “treatments”. Here’s is my two cents for those dealing with RA and their supporters.
- Life is short. Don’t waste time on prescriptions, herbs and medicines that are not working. Try different remedies, diets and medications. See it as solving a mystery.
- Be your own advocate. Doctors are doing their best but if the medication is not effective, ask about other options. Do your research. Read. Ask questions. Take control of your health as much as you can. If I hadn’t been my own advocate, my life would have been spent on the couch. In 1983, doctors told me to change my active lifestyle to a sedentary one.
- Listen to your body. Take note of your body’s response to stress, food, lifestyle, exercise, climate, acupuncture, whatever healing path you are on. Listen closely. Is this helping or hurting. Note changes and patterns.
- Move your body everyday. “If you do not use it , you lose it” has been one of my mottos. My worst days go-to has been water based, swim, bathtub or hot tub. Water has been soothing for me. Nowadays, doctors advise RA patients to stay active and move your body, the opposite of what they advised me 35 years ago.
- Seek out Support. Check out online forums. Dealing with pain and an autoimmune disease can be lonely. Share your story with others including your loved ones. I have found even those who are closest in our lives struggle with asking questions about RA. See it as your mission to educate those around you. The general public are ill-informed about RA. Love this article about what NOT to say to someone with RA, click Here.
- ” Make your disability, an opportunity”. I have lived by this quote by Kurt Hahn, founder of Outward Bound. What learning is there to glean? This is an intensive course on self care. Don’t fight it or think it is a form of punishment. Working towards acceptance will bring more peace and less stress.
Here is a good book and resource for general wellness and health for everyone. I return to this book regularly. How To Eat, Move and Be Healthy by Paul Chek.
I just discovered a good website, that is just focused on Rheumatoid Arthritis and has good information, articles, resources, a forum, etc…click Here.
To read more about my story and intention for this blog, Click Here.
For more details on my life living with RA, Click Here.