Ouch! 6 Lessons Worth Sharing

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6.  ” 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.

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9 Thoughts to “Ouch! 6 Lessons Worth Sharing”

  1. M

    Thank you for this post. The insight into the specific moment and the vulnerability you offer is both moving, inviting and informative all at once. As someone who has known you for many years, but didn’t always see an appropriate opportunity to ask about the details about your RA this allows deeper understanding to your life. I’d like to read more entries similar and keep up to date on your training 🙂

    1. Thank M for you kind and supportive note!

  2. Grace Pike

    Priscilla this is a great entry. Your sense of self-responsibility & open-ness to be informed, change what’s not working, and responding to your heart’s desire to live your way is so ‘right on’. And acknowledging Andrea’s role, empathy & pain/’pain’ with the regular injections—partnership in the truest sense. Thank you, Neighbour

  3. Amy

    Inspired. Thank you for sharing your story Priscilla.

  4. Sara Otis

    I am going to start Enbrel next week. I am hopeful that it will help with my inflammation. Thanks for your encouragement.

    1. Good Luck Sara and keep in touch!

  5. On giving shots…

    When Priscilla started taking Enbrel 14 years ago, i went with her to Kaiser to learn from a nurse how to administer the shot.
    After 14 years, here’s what i learned:
    Go to a nurse to teach you how to do it
    Then, after a while, if who’s receiving the shot complains to much, find a tutorial online and keep improving.
    We keep Enbrel in the fridge and take it out 10 min. before the shot. We learned that if it is cold hurts more.
    It always hurt, sometimes a little sometimes more. For some reason, in Priscilla’s case, there’s always the left arm that hurts the most.

    It is not a big deal, Just make sure you, the patient, remember to ask for the shot at a decent hour, not before going to bed. Half sleep shot giving is not recommended, it really hurts! use your smart phone to remind you.

  6. Ravi

    Hi
    It was great reading your blog. It’s very encouraging to know that you have RA from 1983 and managing the RA so well. My wife Nimi was diagonised with RA a month ago and she has started quinine tablets, she has pain in her ankles and the two fingers in the left hand. My wife is a artist and runs a art school and conducts art exhibitions of her paintings. Now that she is diagnosed with RA we are dreading what to expect, will it effect her right hand fingers as paints with her right hand. Please advise as to how to take it from here and also the latest available drugs.
    Thanks
    Ravi

    1. Dear Ravi,
      Thank you for your kind words. Your wife will find her way by trying different things and paying attention to her response. As I have mentioned, it has been a journey of self care and an experiment to find what has worked for me. We each have to walk this path of discovery for each person is unique in their responses to “treatments” whether it be diet, medicine, herbs, acupuncture, yoga and exercise. Please stay in touch! Take care.

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