I had finished college and was ready to move on with life. Like most people I know, I had dreams and visions of what my future would look like. However, life happens and sometimes those dreams and plans get interrupted. Don’t worry though, I didn’t let it keep me down.
The next few years of my life were what I would call interesting. I had been on crutches due to reflex sympathetic dystrophy, which somewhere along the way had gone through a name change and was now being referred to as complex regional pain syndrome, for ten years. I wanted so badly to get rid of the pain and get off crutches. However, it seemed the harder I tried, the more difficult it became.
I began having pain and numbness in my right arm and hand. Part of the time my arm and hand would turn purplish and cold. Other times, my hand would go numb. I was afraid I was getting CRPS/RSD in my arm and hand. My pain management doctor thought it was probably something else and sent me to see a neurologist. It turned out I had carpal tunnel syndrome in both wrists, but it was worse in my right one. While most people see carpal tunnel as something bad, it was a relief to know this wasn’t CRPS/RSD. The doctor’s also thought I might have a pinched nerve in the neck area of my spine. However, they couldn’t confirm this because my neurostimulator made performing an MRI too risky.
My pain management doctor tried carpal tunnel injections. However, they didn’t help. My carpal tunnel wasn’t bad enough to require surgery, so I was put in wrist braces. This made for an interesting situation. Wrist splints for carpal tunnel are intended to keep the wrist from bending. If you’ve never tried walking on crutches with carpal tunnel wrist splints, I encourage you to give it a try. It’s difficult, but I managed.
In 2011, my sister and her husband welcomed a baby girl into their family. I was now an aunt to two nieces and a nephew.
In 2012, an EF3 tornado wiped out the small town I had grown up in. As much as I would have loved to help with the clean-up and recovery, I wasn’t physically able to do that. However, I found my own way to help out. I volunteered a couple of hours a day a few days the first two weeks at the shelter set up for those who had lost their homes. I used my time there to help bring happiness to children whose lives had been turned upside down. We played board games, colored, and did crafts. I also did some volunteer work for the county judge executive answering phones, taking messages, and answering questions. Due to my pain and physical disabilities, I wasn’t able to do much, but I helped what little I could.
While volunteering, I became sick. I wasn’t sure what was going on, so my sister took me to the doctor. I was having strange feelings in my head and I was cold and clammy. They say I was conscious, but I do not remember my primary care doctor coming out into the waiting room and examining me. He wasn’t sure what was going on. He sent me to ER. He thought they would admit me to the hospital for observation and further testing. However, the ER doctor diagnosed me with vertigo and sent me home. My primary care doctor disagreed and suggested I follow-up with my neurologist. I ended up being diagnosed with seizures. I was on medicines known to cause seizures so they stopped those hoping it would help. The diagnosis was later changed to pseudo or stress related seizures.
I continued to see my pain management doctor and neurologist. They were working together to figure out how to treat the symptoms associated with my CRPS/RSD and other health issues without causing additional health problems. They tried me on various medicines, but nothing seemed to control my pain. My stimulator was still helping with the leg pain, but I was now having neck, shoulder, arm, and hand pain.
Although I was in pain and was having some kind of seizure mimicking episodes, I still had a strong faith and was determined to go to church when I was physically able. God, along with my biological family and church family, was what kept me going. I was at church one day when I started feeling like I was going to faint. I assumed it was one of those episodes I had been having and didn’t think much of it. I went to a small room in the back of the building and laid down, just to be safe in case I did pass out. My sister came back to check on me and knew something wasn’t right. She called my mom, who was attending services at another near by church, to come to get me. I was too off-balance from whatever was going on to walk on my crutches, so mom brought a wheelchair to get me. My doctor had ordered me a wheelchair to use when I was having these spells to prevent me from falling. However, this time I couldn’t get in the wheelchair. No matter how hard I tried, my legs wouldn’t work. At the time, I think I went into shock. All my mind could focus on was “why are my legs not working?” My sister later told me that the entire time I was trying to get in the wheelchair my legs were just dragging behind me and when the men lifted me into the wheelchair and transferred me to mom’s van, she said my legs just dangled.
We didn’t know what was happening, so my family took me to ER. While in ER, I got some movement back, so they released me to go home and follow-up with my regular doctor. On Monday morning, my legs still felt heavy and strange. I went to see my pain management doctor and neurologist. They did some basic tests and confirmed that my legs were weaker than normal. They thought it could be a rare reaction to a medicine they had recently started me on, so they stopped that medicine. Normal feeling returned to my legs, but they were still weak. I would need physical therapy in order to get back on my crutches.
I was now having unexplained episodes that my family described as being similar to seizures and my legs had temporary become paralyzed without a clearly determined cause. At least I hadn’t been abducted by aliens… or had I…
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