Just like everyone else
I was diagnosed in 1999. I was 39. I had my first symptoms when I was 12. All the time I was growing up, I could never quite do as much as my siblings on our farm. I was a good student in high school. I had a horrible time in college because of cognitive issues. I would take great notes, do all the home work and study. When it became time to take the test, I would remember none of it.
I started off as an engineering student. After struggling for six years hearing all my problems were in my head or allergy related, working as hard as I could attending regular semesters and summer school, working when I could and changing my major six times; I ended up finally obtaining a degree in journalism. I ended up not taking a summer off for an internship and landed a horrible first full-time job. Eventually, I ended up working in the engineering field as a technician using the skills my father had taught me.
We even ended up working together when he retired and decided to start a business. I tried to go back to school after he sold out to a partner. I still couldn’t finish that elusive engineering degree. I ended up spending 23 years drawing plans for civil engineers. A very deadline oriented business. I usually worked over 50 hours a week and had spent many nights working even through the night. I had always been overweight. I had tried many diets over the years. My symptoms had not been major. A reoccurring incontinence issue and some issues with memory.
I had never missed work and none of my symptoms negatively impacted my job until I decided to go on a low fat diet in 1999. I steadily got worse until I had ended up at my GP’s office yet again with a numb upper lip. I had already been to a gastroenterologist and other specialists. He decided to send me to a neurologist. After countless tests, the neurologist told me I had high blood pressure.
I had been to see my GP, countless specialists and the emergency room several times and still no answer. One day while at work trying to finish yet another project, I couldn’t control my right arm and hand. Again, I went to my GP. They told me I was dehydrated. I went home and went to bed. I didn’t get out of bed until three days later when my sister forced the neurologist to see me. At that point, I could even hold my head up.
Finally, after my sister insisted; he admitted me into the hospital. I could no longer feel my hands or feet, was having speech and vision problems. I could no longer walk without help. I couldn’t even dial the phone or sign my name. I spent two days on high dose steroids and two weeks in the hospital. They would still not diagnose an illness.
After a week at home, the steroids had worn off. I lost all hopes of returning to work. My parents took me in. I slowly got better leaning to live with my new limitations. I regained the vision I had lost but still had problems with depth perception. I went from a wheel chair to a walker and now a cane trying to overcome weakness and my world spinning because of damage to my left inner ear. I practiced until I could write again. My poor father had to teach me to drive again!
Two months later I was able to go back to work. I still had a job but, worked for a different team. I wasn’t allowed to do any design work but, only the grunt work. I had to pick up fifty pound rolls of paper for the large format printer, run copies and other tasks which were physically difficult. The owner of the business knew I had a brain illness. Eventually, they learned I could do the work I had done before but; I was never really trusted again. I ended up going from job to job.
I was able to lose a significant amount of weight and began dating again not wanting to be alone anymore. I married for the first time at 45. My spouse has diabetes. He understood what it meant to have a chronic illness. My ms didn’t matter to him.
My last engineering job went away just as the recession was hitting. Engineers were learning to do what I did for them in school. My position wasn’t needed anymore. With that and the recession, I never found another job. After a three year battle to gain disability and losing our home, we moved in with my mother.
I took a chance, performed an article and submitted it to a farm magazine. The editor liked it, printed it and paid me for it! I started writing for the magazine as a freelance writer/photographer with the help of my husband. It was just too difficult for me to physically move around a farm without help. Many homes or locations did not have railings to help me get up stairs. I still can’t feel my feet and use a cane as my world still spins. Muddy areas are impossible for me to navigate. Almost four years after losing my job, we have been able to obtain our own home again. We hope to start a business together in the near future.
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