There are plenty of things I miss in my life such as my dogs that have passed or my friends in Chicago that I moved away from. But I think the biggest thing that I miss is my independence. When I was younger I was able to do everything physically myself. A memory that I always have is climbing up the cabinet like a monkey to get sweets. My mom had always hid them from me because I always had too much sugar .
As I got a little bit older, I had a job at a nursing home. Here I was able to do pretty much everything h on my own. I would wheel myself (I was using the wheelchair by this time) up and down the long hallways and if I had to use the bathroom I would go without any assistance. One thing I remember most is serving hot coffee to the residents without spilling or dropping the mugs.
When I was at college I was also still able to do quite a few things on my own like get out of bed and use the bathroom on campus. I liked to go tanning so I would be able to get in and out of the tanning bed myself.
Now I can’t do any of these things myself without assistance. I hate having to rely on other people to do a simple task like using the restroom. I miss being independent and able to do things.
Wednesday, September 26, 2018
Tuesday, September 25, 2018
What makes me
Hello everyone!
So I am new to blogging and thought I would give this a shot. I needed something to do with my time since I don’t work and don’t have a whole lot to do. This first post I will share with you a little about me and what I plan to post about daily.
I was born in Cleveland, Ohio and moved to Chicago, Illinois about 9 years later. I consider Chicago my “home” since I lived there for 16 years. I then followed my family to Columbia, South Carolina and have been here since February ‘16.
I have a twin sister, Jamie, and two older brothers, Mike and Casey. I currently live with Jamie and my parents. Me and Jamie are fraternal so we don’t look much alike.
When I was 7 years old, I tested positive for a rare neuromuscular condition called Friedreich’s Ataxia. Friedreich's ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.
Jamie and Casey had already been diagnosed with this about 6 months prior. Life has been a roller coaster but I’m glad I have my twin sister by my side to support each other when times are tough. We have been through so many obstacles throughout life that makes us strong, independent and smart women today and knows how precious life is.
I’m sure I will be blogging more about FA and my sister and our crazy life experiences. But that is all for now, thanks for stopping by! 😃
So I am new to blogging and thought I would give this a shot. I needed something to do with my time since I don’t work and don’t have a whole lot to do. This first post I will share with you a little about me and what I plan to post about daily.
I was born in Cleveland, Ohio and moved to Chicago, Illinois about 9 years later. I consider Chicago my “home” since I lived there for 16 years. I then followed my family to Columbia, South Carolina and have been here since February ‘16.
I have a twin sister, Jamie, and two older brothers, Mike and Casey. I currently live with Jamie and my parents. Me and Jamie are fraternal so we don’t look much alike.
When I was 7 years old, I tested positive for a rare neuromuscular condition called Friedreich’s Ataxia. Friedreich's ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.
Jamie and Casey had already been diagnosed with this about 6 months prior. Life has been a roller coaster but I’m glad I have my twin sister by my side to support each other when times are tough. We have been through so many obstacles throughout life that makes us strong, independent and smart women today and knows how precious life is.
I’m sure I will be blogging more about FA and my sister and our crazy life experiences. But that is all for now, thanks for stopping by! 😃
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