A day in a life with rheumatoid Arthritis – Part 1

I know I’m not the only one diagnosed with rheumatoid arthritis. It’s estimated that 1% of the population has RA. I know RA is not the worst problem in the world, many experience far worse in terms of pain, debility, struggle and hardship. This article tells a story about a tiny pain droplet in the ocean of pain that is experienced globally whether from RA or some other named disease or event affecting the body or the mind.
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I dreamed I could fly above the clouds, I was so light and airy, I moved with grace and ease and then I was dancing the polka, gliding across the floor, giggling and laughing out loud.
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The morning light filters through the cotton white window coverings gently touching my eyelids. Instantly, I’m aware of a painful heaviness from my head all the way to my toes. I feel battered. Sighing, a thought comes to mind. Why is it that I don’t have RA in my dreams? I roll back the covers that feel like a fifty pound weight.

A sore restrictive pain radiates from the back of my neck joint up toward the base of my skull, down between my shoulder blades and out toward my shoulders. The whole area feels frozen and awfully painful. Some day’s I can hardly move my head right or left, up or down because the neck joint is so inflamed and painful to move.

I roll onto my back and raise my legs flinging them away from my body to propel me into an upright position.  Sitting at the side of my bed, I contemplate standing. My knees, ankles and feet are swollen and sore as if they are sprained. The thought of standing feels overwhelming. The energy and pain it takes seems insurmountable. I imagine in my mind’s eye that I stand up with ease over and over until I feel I can do it. I begin to rock my body back and forth until I gain enough momentum to lift myself up and off the bed.

Slowly, I maneuver myself to the kitchen feeling the sore tightness through the neck and shoulders while placing one foot methodically in front of the other so as not to make a move that will cause increased pain in either ankle.

Before this uncontrolled RA situation developed, I would have headed straight for the shower, but now, it takes a few hours of wakefulness before I’m able to accomplish that feat, although sometimes I haven’t been able to shower at all due to extreme unrelenting pain and inflammation.

The shoulder joints feel achy and hard to move, they don’t want to let me lift my arm to reach for the tea bags in the cupboard. I grab a ruler, raise my hand as high as it will go and knock the tea box onto the counter with the ruler. Mustering all the strength I have with two hands, I tip the tea-kettle enough to pour water into a cup.

One day I asked the rheumatologist why the symptoms are so intense in the morning after a night’s rest. She simply replied, “We don’t know.”

I’ve learned that the higher the inflammation count, the longer it takes for the symptoms to let up a bit. Sometimes I feel slight relief by early afternoon, sometimes later, sometimes not at all.

I may have written about rheumatoid arthritis in an earlier post, but for those who don’t know what it is, I’ll explain what I know. RA is considered an autoimmune disease. Autoimmune means the body’s immune system is overreacting.

In RA, the immune system over-produces white cells which the body use to fight against invading bacteria and virus, but apparently with RA there is no bacteria or virus to fight off and the white cells collect in the synovial fluid of the body. Synovial fluid is found all through the body including surrounding joint tissue and organs.

The abundance of white cells is the cause of the inflammation, the inflammation is the cause of the pain. Over time the inflammation destroys the tissue and the bone. Once the inflammation sets in, it won’t let up. Several of my limbs are severely impacted with limited motion.

My feet do not bend and are too swollen to comfortably fit into trendy off the rack foot-wear. My gait is clunky and unsteady. I’m sure sometimes people think I’ve been drinking. Immobility in my ankles and feet prevent me from descending the stairs like most people with one foot then the other, I descend one step at a time with both feet. Going up a flight of stairs I’m winded due to the RA affecting my lungs and the general loss of stamina from chronic disease.

Kneeling is not an option at any time and sometimes it’s hard to move from standing to sitting or sitting to standing. Opening containers, cutting vegetables, holding/carrying dishes, and other household tasks is cumbersome and painful with sore inflamed fingers, hands and wrists.

To sum it up, my body is in constant pain every day, sometimes it’s tolerable, other times overwhelming. Life has slowed down considerably, every task and activity takes much longer to accomplish, walking, showering, personal care, driving, shopping, preparing meals, cleaning-up, etc., etc.

Just as Lester Levenson wondered what his life was for when he was sent home from the hospital and told there was nothing the doctors could do after having a massive coronary, I too, wonder what my life is for. I ask myself, “Is it for experiencing pain and suffering?”

Thanks for reading. I really appreciate it. Part 2 will follow soon. Comments are always welcome.

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19 thoughts on “A day in a life with rheumatoid Arthritis – Part 1

  1. I am at a loss for words Marianne. Thank you for sharing your extremely painful experience of living with RA. I wish I could make it go away for you, give you some relief. I send my love to you and my admiration for your strength and courage.

    Melinda

    • Melinda, thank you for your kind and loving heart. I was reluctant to post a blog about my RA experience, however through it I have already met another blogger who is not even 30 yrs. old yet and has experienced a horrendous health issue for 5 years that has baffled doctors so far. I hope that by blogging about my experience it will help me to make sense of my situation and at the same time reach others who live with chronic pain for whatever the reason. Thanks so much for reading and commenting, Melinda.

  2. Oh dear, Marianne. I can only imagine how difficult life must be for you. I hope the veggies you are getting are helping and not causing you more pain by having to go through the motions of preparing them!

    I do look forward to getting to know you over this summer and learn more about your experiences with RA and with life in general:)

    Lots of Love,
    Candace

    • Hi Candace, I think your farm fresh veggies are just what I need to help flood my body with great nutrition. I’ve made some really yummy stir fry’s this week. I look forward to getting to know you and hopefully help out at the farm when the RA is more under control. Thanks so much for reading and commenting, Candace. 🙂

    • Robin, your kindness and thoughtfulness is really appreciated, hugs accepted. I wish you had a magic wand too, in fact, if we both had one maybe we could help heal a lot of people. I keep thinking and hoping, there has to be an answer to this. Thanks so much for reading and commenting, Robin.

  3. Pingback: What's Miracle Mama Up To? | Miracle Mama

  4. Pingback: What's Personal Transformation Enthusiast Up To? | Personal Transformation Enthusiast

    • Thanks Kathy. I’m looking for guest posts for Miracle Mama while I take a break, would love you to write up something. Just send me an email when you’re ready. Thanks for reading and commenting, Kathy. 🙂

      • I’m taking a break, too, Marianne. Sorta. Kinda. Not really. Smile…but keeping words to a minimum for a while. Besides, for some reason, whenever I try to think about what I would write–nothing arises. Hmmm….still pondering this. But loving reading your miracle blog so much!

  5. Hi Marianne,

    I wanted to reach out and say hello! I too have RA. Mine is Seronegative, Severe RA. Reading your message is all too familiar. I share in your positive outlook to the challenges we face. I hope you will visit me at thrivewithra.org and see what else we have in common.

    Kindest Regards,

    TWRA

    • TWRA, thank you for reading and commenting and many thanks for pointing me to thrivewithra.org. I read the story of your RA onset and I look forward to reading more of your posts. As you mention, living with RA symptoms is definitely a learning/growing experience. Take care.

  6. No need to wonder what your life is for. You are a huge source of inspiration and motivation and drive to overcome and develop and learn and grow. Your blogs are wonderful and your story is so very moving, considering the graciousness and joy that comes across in your posts and comments.

    You are a true gem of a person. I so wish you were pain-free. But the example you are to us all is a treasure. Victor Frankl, a psychiatrist and Holocaust survivor talks about man’s last freedom, the ability to choose one’s response to suffering, to choose one’s attitude to circumstances. He explains in his seminal work, Man’s Search for Meaning, that discovering “why” makes any “how” endurable. To suffer nobly, he says, is one way to attach meaning (the “why”) to suffering (the “how”).

    Blessing and prayers out to you!

    • Ken, thank you so very much for your kind uplifting words, blessings and prayers. It was a surprise and a pleasure to see your comment this morning. It made my day. I have heard of Victor Frankl’s message however, I’ve not read Man’s Search for Meaning.

      From the time I was very young, I’ve asked myself, what is life for, where did it come from and what is it about. Surely the challenges I’ve faced cannot be all for naught. So I began blogging last year to inspire myself, develop and grow, track change, and create a new outcome. Sometimes in the midst of physical pain, it’s easy to loose sight of this. Maybe this blogging thing is my “why”.

      Thanks Ken. 🙂

  7. Pingback: A day in a life with rheumatoid Arthritis – Part 2 | Grandeurvision

  8. Hi Marianne! I followed you from the “Late Bloomer” blog when I saw that you were writing about RA. Before I read the rest of this series, I just wanted to say that this post made me cry – for two reasons. One, I’m sad to see others suffer. Truly. And two, finding someone who understands and knows what my life with RA is like is like finding a best friend. Thank you. That’s why we need to write about our pain and struggles…not all the time…but every now and then others need to know what our daily struggles are like and there are others with similar struggles (like me) who will be comforted to know that they are not alone. Blessings, Patricia

    • Thanks so much for your comment, Patricia. Yes, I definitely relate firsthand to the pain and struggle of others with RA. It’s a devastating disease. So sorry that you have its experience also. “Late Bloomer ” is a great blog and I’m so happy you found mine also. I’ll be over to see you too.

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