Some of you are new to hearing my story and some of you have been on this journey with me since my accident – either way, thank you. My blog will be a communication vehicle for me to express how I’m feeling, the challenges I face and the deeper details behind the details.
In the past year+, what I have learned is the lack of education available for someone with a Spinal Cord Issue (SCI). The biggest learning is that nurses do not get trained on SCI. Whether it’s just helping me transfer in a hoyer to a table to me staying in the hospital with nurses who don’t know how to roll me over, there is a gap. I inspire to educate everyone on SCI because if I am going to live with this, I want to make sure I surround myself with advocates for my recovery and the know how to help me. It’s a big feat, but I need to win at this. Each post I want to make sure you walk away learning something. Whether it about me, Spinal Cord Injuries, the health insurance system or people, learning is key.
What’s on my mind: Today I am having a lot of pain. I am not sure if the pain is caused by the need for me to have back surgery (loose T4 screw, T3 bone spur pressing on my SCI and my fusion at a 35-degree angle) or if it is something else. I’m banking on the need for my back surgery.
The T3 bone spur created most of my issues and was the culprit for why I am paralyzed. Injury at the T3 level can impact, what’s called the sympathetic nervous system. Sympathetic outflow is your body’s automatic wiring for alertness, circulation, and temperature control — and T3 is one of the key stations along that wiring. This impacts the following: – Skin that feels unusually sensitive or reactive. This is what I am experiencing now. Originally across my chest, my skin would feel like I had a really bad sunburn. I started to wear what I call are “fluffies”, which feel like you’re wearing a brand-new fluffy teddy bear you give your children (I may own 8 fluffies now). When my skin gets like this, I can’t wear anything but my fluffies. Now, my skin feels like this not only across my chest, but up and down both sides of my arms. –Changes in sweating patterns. I now only sweat on the left side of my body. Sometimes when I sweat it’s an autonomic dysreflexia (AD) or it could be sweating due to temperature or exercise. What is autonomic dysreflexia you ask? Understanding autonomic dysreflexia was a must before leaving the hospital. Because I can’t feel from my sternum down, anything that the body interprets irritation such as a full bladder, skin irritation, tight clothing, bowel impaction, ingrown toenails, a cut on my skin, even indents from tight socks the bodies reaction is a sudden pounding headache, flushed skin or sweating above the injury, goosebumps below the injury, nasal congestion, anxiety or a sense that “something is wrong or very high blood pressure. If AD isn’t addressed immediately, blood pressure can increase rapidly and become an emergency.
I think that’s enough education for today. In conclusion, I’m in pain and the only thing I can do is wear my fluffy. I refuse to jump on the pain pill wagon. July 17th is when I will get a bone density test, x-rays and speak with my neurologist about what is next for me.
Thank you for reading my blog.
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