BENEFITING: Transverse Myelitis Association
EVENT DATE: Sep 20, 2015
In March 2007, I began feeling tired and achy. I was a 50 year old woman, who was employed full-time, worked out 3 times a week and managed a household with three children in college. My right side felt numb and cold. My left arm felt like it should be black & blue and was so painful. My neck bothered me a lot. It was also hard to sleep at night because I had to wake myself up in order to change positions during the night.
Within a month, I was unable to walk on my own and had emergency neck surgery to remove a tumor on my spine. During my stay at a rehab hospital, I was diagnosed with Neuromyelitis Optica (NMO). As I continued my outpatient therapy, I went back to work 10-15 hours per week and walked with a cane
as well as an AFO for my left leg. Since that diagnosis of NMO, I’ve had two more attacks as well as being diagnosed with lupus. I am no longer employed and became dependent on my husband as my primary caregiver.
It has been an upward battle in terms of dealing with insurance companies, medical facilities, doctors and therapists. I cannot stress the fact that we must be our own medical advocate 24/7.
In conclusion, I have to say that I would not be where I am today if it was not for the unquestionable and selfless care that I have received from my husband. I don't believe that any doctor, medicine, treatment or therapy comes close to the positive effect that his care had provided me. Unfortunately, the love of my life passed away in March, 2014 and I am now on my own. My children have been very supportive as well, but they are starting out on their own and shouldn’t have to be taking care of their mother. It’s been very hard accepting that role reversal.
I hope this Walk will help in raising both funds and awareness for the Transverse Myelitis Association.