Moments

Enjoying the outdoors and cooler weather in Big Bear. Taking time to seize the moment when my pain in on the low end for me (about a 4) and watching to make sure I do not over heat and cause my symptoms to flare.

Not being able to regulate my body temperature has made getting out more difficult. Because I only sweat on my face and neck my body cannot cool itself which poses the risk of over heating and heat exhaustion, so staying cool and drinking plenty of water are a must. Then there is the opposite issue as well. My body cannot tolerate over air conditioned places. Both extremes cause my body to spam and burn more, which of course, causes my pain to increase. Oh, the joys of living with a spinal cord I jury.

The best thing I can do for myself is to take the opportunities that present themselves and keep moving forward. At the same time, learning to allow myself down time when my body is in pain without beating myself up. I still have work to do in this area.

Published by Denise Rogers

I am a wife, mother, stepmother and grandmother who enjoys spending time with family and friends, crafting, gardening, and I am learning to live with being disabled. In 2017, after my 8th thoracic spinal surgery, I lost all feeling from the waist down as well as losing my proprioception on the right side. This has made it difficult to stand without assistive devices and made it, so I am having to relearn to walk. Plus, I have another uncommon condition called Chiari Malformation Type 1 which also creates balance issues as well as many other health issues. Because of the Chiari and the spinal cord injury, I have been left with severe nerve damage which causes a great deal of pain (5 and greater on pain scale) as well as spasticity, muscle spasms, and allodynia (burning) in various areas of my body. I have endured 8 surgeries on my Thoracic Spine and will probably need more as the drain that was placed will eventually clog and require replacement. Currently, I have a spinal to pleural cavity shunt, which drains the CSF from my arachnoid cysts into my pleural cavity. Professionally, I am a retired Health Care Professional with over 26 years of experience. I have worked in the Public Health realm as well as in Long Term Care and Acute Care. I have a B.A. in Sociology with an emphasis in Social Work. It is my hope that through sharing my personal trials, experiences, and triumphs that I can help others keep moving forward. No matter what life throws at us we can always tell a better story. I know that God is with me and because of this anything is possible. His promise to be by my side every step of the way helps me to keep pushing on even when there are setbacks.

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