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My name is Karen, and for my birthday I would like to get an electric wheelchair to maintain my independence. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA or RA) at age 1-1/2 years old. It’s been called the “number one crippling disease”, and I've been fighting it since day one.
I spent a third of my childhood in Children's Hospital in Los Angeles, CA, starting at age three, in and out of the hospital for months at a time, while my family remained at home in San Diego. At age twelve my hospital stays turned into joint replacement surgeries and rehabilitations. I have artificial bilateral hips, knees, shoulders, elbows, and an ankle. I have fused bilateral wrists, and a toe. In 2013 I had to have two emergency surgeries on my neck, which resulted in a C-3 thru C-7 replacement/fusion. Also in 2013 my hip broke, but broken neck trumped broken hip, so as of today my hip is still broken waiting to be fixed. So far I’ve had 21 surgeries, and yes, there will be more. Let’s just say that trips to the airport are not fun anymore…
In addition to surgeries, another common treatment for RA is immune-suppressing medications. I have always taken these medications, but in 2008 I started taking an IV-infusion chemotherapy drug that was found not only to work well in treating certain cancers, but also Rheumatoid Arthritis. I go into the hospital four times a year for these eight-hour IV treatments.
Despite this disease and all of the challenges that come with it, I have always been determined to live a “normal life”, to do all of the things that my peers are doing and all of the things that I want to do, and to do so I need to remain as independent as possible.
Getting an electric wheelchair will allow me to remain independent. My body cannot tolerate standing on my feet for long periods of time or long-distance walking. Even the walks to/from the handicapped parking spaces into the hospital where I get the treatments can be difficult, and regular trips to the store are even worse. So I need this wheelchair for these types of occasions. I have done my research and found the best model for my body and needs. Now I just need to find a way to get it, since my insurance won’t cover it.
I spent a third of my childhood in Children's Hospital in Los Angeles, CA, starting at age three, in and out of the hospital for months at a time, while my family remained at home in San Diego. At age twelve my hospital stays turned into joint replacement surgeries and rehabilitations. I have artificial bilateral hips, knees, shoulders, elbows, and an ankle. I have fused bilateral wrists, and a toe. In 2013 I had to have two emergency surgeries on my neck, which resulted in a C-3 thru C-7 replacement/fusion. Also in 2013 my hip broke, but broken neck trumped broken hip, so as of today my hip is still broken waiting to be fixed. So far I’ve had 21 surgeries, and yes, there will be more. Let’s just say that trips to the airport are not fun anymore…
In addition to surgeries, another common treatment for RA is immune-suppressing medications. I have always taken these medications, but in 2008 I started taking an IV-infusion chemotherapy drug that was found not only to work well in treating certain cancers, but also Rheumatoid Arthritis. I go into the hospital four times a year for these eight-hour IV treatments.
Despite this disease and all of the challenges that come with it, I have always been determined to live a “normal life”, to do all of the things that my peers are doing and all of the things that I want to do, and to do so I need to remain as independent as possible.
Getting an electric wheelchair will allow me to remain independent. My body cannot tolerate standing on my feet for long periods of time or long-distance walking. Even the walks to/from the handicapped parking spaces into the hospital where I get the treatments can be difficult, and regular trips to the store are even worse. So I need this wheelchair for these types of occasions. I have done my research and found the best model for my body and needs. Now I just need to find a way to get it, since my insurance won’t cover it.