Slide and twist….

I used to joke that if I ever woke up without pain, I’d think I was dead. I should clarify that I often wake up without pain, but as soon as I attempt to move…

YOWZA

This past summer, my diagnosis changed from rheumatoid arthritis to non-radiographic ankylosing spondylitis. My back has been killing me for years. My new infusion medications help a lot, but the recent change in weather from warm to below 0* and back to warm has helped to increase my pain and swelling. The barometric pressure loves to mess with my back. I have a memory foam mattress topper to reduce pressure on my joints, but my back still locks up while I sleep. Getting out of bed is an exercise in shimmying, sliding, and crying out in pain. It really stinks.

I recently started to write romance novels that feature women living with chronic illness. I wanted to promote representation in stories that show people living full lives even when their health isn’t the greatest. In Dragonfly, I documented my morning routine. The following is an excerpt:

I began to stretch my stiff limbs. It was going well until I rolled to my back and could no longer move. I tried to sit up but couldn’t do it. My back was locked solid. It was time for emergency maneuvers. I couldn’t roll to either side, so I pushed off the covers and used my legs and arms to slide to the bottom of the bed. I tried to sit up again, and pain shot through my spine, bringing tears to my eyes. Elle Woods had the bend and snap maneuver in Legally Blonde. Well, Jane Sawyer has the slide and twist in real life. I slide my butt off the bed, then twist my body around until I am on my knees. Some of the time, I can get right up. On other days, it’s a no-go. I’m feeling optimistic today, even though I walked a lot yesterday. Hopefully, I can complete this maneuver before Beckett finds me stuck on my back like an upturned turtle. I started to slide off the bed, and it was going well until I added the twist. I usually move around a lot when I sleep. I stayed in one position, cuddled up with Beckett. Now my spine is locked up tight. Normally, I can move in 30-60 minutes. I don’t have the luxury today. I am going to be in for a world of pain, but I must get a move on and stand up. I force myself to twist again and fall to the floor on my knees. The pain is so overwhelming that I cry out. I couldn’t help it.” -Dragonfly

Elle’s maneuver looks graceful….

Mine looks more like this…..

An old friend of mine read this passage in my book and asked me if it was real. Although my stories are fictional, there are some personal anecdotes and stories peppered throughout. When I confirmed this particular passage was something I deal with regularly, she was shocked. She admitted to not having any idea how intense my daily struggles are. I may blog about my pain, but I don’t walk around talking about it all the time, so that is understandable.

Pain is my reality. Living a full life with it is my never ending goal.

Dragonfly, by Georgia James (that’s me) is available for purchase exclusively on Amazon in ebook/Kindle and paperback. amzn.to/3hpYiJL

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

2 thoughts on “Slide and twist….

  1. You know I was going to write a romance novel, but it sort of took a turn at:

    he closed the door.

    Sheryl read over my shoulder and said either I give it up or she was going to move out. I said that was OK, I had a contract in CA with a film studio and they wanted 15 scripts. They want to film all in one day . in six minute segments.

    Even promising I was not invited to be in them Sheryl said she was shocked. I said heck Sheryl all i said was he closed the door. I did not even get out:

    to get out of the garage as he pulled his car out.

    I guess i better stick to realism.

    Liked by 1 person

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