Sue lived with multiple sclerosis for ten years before she received a formal diagnosis. Despite her struggle she has tried her best to stay strong and not let the disease get her down.
You would never know she was sick from looking at her. After spending an entire afternoon with Sue, the obstacles she faces every day were very well hidden. In their place was a constant smile and laugh that lit up the entire room — a stark contrast to her reality.
But she doesn’t see it that way.
“Being the oldest girl of six kids, having to be the caretaker of all the younger siblings gave me the strength, compassion and empathy to focus my energy on taking care of others (and I love to do it) — especially my family and patients.”
Sue was diagnosed with multiple sclerosis (MS) in 2008. But this by no means was the beginning of her struggle. Her first symptoms appeared in 1998, ten years prior — headaches and episodes of blurred and double vision. Sue immediately went to the doctor, who ordered an MRI.
Despite abnormal MRI results, Sue was not diagnosed with MS at that time.She continued seeing her doctors over the years, but they provided no concrete answers regarding her condition, and eventually she just stopped going.
New symptoms continued to emerge—tingling and numbness in her both feet and legs and sometimes her face and head, difficulty swallowing, balance issues, and memory loss, culminating in an episode of optic neuritis in October of 2008. But Sue didn’t know what was happening at the time.
She was set to embark on a European cruise, and as she walked toward the bow to watch the ship leave port when she stumbled. A travel companion noticed that her right eye was dilated and fixed. “I didn’t know what was happening. I thought it might have been a stroke — I was stumbling and dizzy,” Sue recalls. The stumbling and imbalance subsided, but the pupil remained dilated and fixed for the next two weeks.
A visit to a neurologist upon her return resulted in a formal MS diagnosis. A spinal tap indicating her body is producing an immune response against itself.. “I remember sitting in the office thinking ‘I’m not going crazy. There really is something wrong with me.’”
Without a formal diagnosis over that ten-year period, Sue was unable to take advantage of medications that could have slowed the progression of the disease. But she is managing. Today Sue’s MS is at a moderate stage and stable. After two different medications, her third one seems to be working. At her last MRI, no new lesions were found in her brain.
But living with MS day-t0-day it is still a struggle and requires effort, vigilance and patience. Sue continues to suffer from extreme exhaustion, vision problems, loss of memory and severe balance issues. She goes through periods where she sleeps for two days straight. Friends and family have difficulty understanding and don’t always extend invitations, assuming that Sue is sick and won’t want to go out or participate in activities.
“It’s difficult. This past Mother’s Day I couldn’t attend my own BBQ because I was so exhausted. I couldn’t get out of bed.”
But Sue remains optimistic and hopeful. She has started talking about her illness more with her family; she goes to educational meetings; keeps up with the most current information about the disease; and tries to have a plan for each day. “Get up; go to work or keep busy — this is my mantra. If you sit around, you are just going to keep thinking about your illness, and you can melt away.”
Coming from a big family, Sue is a giver at heart. But she is learning the importance of doing things for herself. She has started working out with her daughter, is focusing a large amount of her energy on staying healthy and is taking inspiration from her two grandkids.
“Watching my granddaughter learning to stand and take small awkward steps is a strong reminder of how I have progressed over the years. Somehow, all of the tiny baby steps I have taken each day have added up, and I find that I am better able to cope with this illness that has had such a great effect on my life.”