I have MS known as Multiple Sclerosis. In 1994 I had been given the diagnoses of MS at the age of 25. It all started with having double vision. I was sent to see a Neuro-Ophthalmologist in Oklahoma City who discovered the disease by doing an eye exam. When I first heard the diagnose I was quick to reject what it was. How could I have this disease? I could walk, I could see, I wasn’t having any trouble with motor skills or other issues that people usually have with this disease. My mother was very quick to get me to sign up for classes. She got me signed up with the MS Society newsletter, I threw it away every time it came in the mail. I didn’t want this disease tainting my life. Aside from the first sign that something was going on with me no one would know I had MS unless I said something.
I had to quit my job working at Wal-Mart my neurologist said working there would put too much stress on me, the heat would make my MS worse and I wasn’t to lift over 5 lbs of anything. So I quit, I had no job for several months. A friend found me a job working with her in a Home Health agency as a receptionist. I took off from there. I wasn’t going to let this disease keep me down. I eventually left that job for a bigger job in Tulsa. It was a bigger city and allowed me to move away from my parents and not be reminded of this disease. While living in Tulsa I never had any issues with MS. I didn’t have to go on any meds or other treatment. I had a great neurologist that kept up with my progress.
Situations arose that would bring me back to my hometown nearly ten years later. My partners’ father had died and she wanted to be close to her mother if she needed help. So we drove back and forth to our jobs in Tulsa. The drive became wearing on me as we were getting up early and getting home late. Everything came to a halt when in 2004 after an OU football game weekend I went to bed Sunday night and woke up Monday morning sitting in my living room surrounded by EMS telling me I’d had a seizure. We learned the seizure was most likely caused by MS; most likely the heat from being out at the football game added to the symptoms. I was taken off work for 6 months. I decided to find a job in my hometown and have been working here since. I’ve had ups and downs with the jobs I’ve had here.
I am the type of worker that when I do a job I will work myself to exhaustion. Nobody can tell me I’m doing too much. I’m sure part of that drive has to do with never going to college and trying to prove I am just as good as someone without a degree. Sadly, working myself as hard as I did came with a price. It was almost a gift to have been let go from my last employer. The job was grueling, my body had gotten older and just couldn’t stand the pace any longer. Since being at home I feel so much better. At my last neurologist appointment my doc was actually pleased I was no longer with my employer and pleased with the path I have chosen to go down. Hearing the news that you have MS is not a death sentence as I first thought it was. Early on when the internet was new I had jumped into some MS chat rooms and began talking to a few people with this disease. They would tell me about how they had to walk with a cane or had swallowing problems or their eyesight was going out on them. I told myself I wasn’t as bad off as these people and felt terrible I didn’t have a debility I could add to theirs. I felt out-of-place and left the rooms never to return.
I have learned through many ‘told you so’ moments that MS is something that can be managed if you are willing to take care of yourself. Before my seizures, I was taking MS injections but those did not work for me. I still kept have exacerbations and nothing would work for me. My doc kept telling me a pill was in the works it was just taking a while to being offered. I was lucky enough that my neuro is on the board of the MS Society so he knew what was up to date and was always aware of new treatments. In 2007 I was lucky enough to be in a drug study for the medication Gilenya. I was in the trial for two years which helped bring the medication for FDA approval. Then I went into an extensive trial on the dosage of the medication to be given. I have been on Gilenya nearly 8 years and I am doing great. I have had no exacerbations. I am able to do things at moderate speed (I have to watch myself I tend to overdo a lot). I am happy to have been a guinea pig for this drug if it helps others live a healthier more fulfilling life.
Going through the trial gave me a better sense of where I am with my disease. I am at a better place that I am not afraid to tell people it is something I have. I am also happy to speak to others that have this disease especially those that have been newly diagnosed. They are just as scared and afraid as I was. I want them to know that if you take care of you this is a manageable disease. I know that for ten of the first years of this disease I didn’t want to talk about or deal with what I had. If you don’t listen to your body there comes a point when it will talk to you. That could be a point that it is too late.