“Hey Sarah, we need you to stay and cover another shift”.
I inwardly hesitated. The feeling in my legs…it wasn’t right. Something was off. I felt so tired and it was like my legs were asleep. I didn’t want to turn down themoney though, so I continued to push through with a smile.
10:00 hit and I was so excited to go home. I was a newlywed and my husband had lost his job. We were barely making ends meet. To be honest we weren’t really making them meet, but that’s normal when you are young and just starting out! I was only 20 years old. It would get better!
I drove home and got out of the car. I went to go up the flight of stairs to my door.
Man, I am getting out of shape! I can barely even lift my legs anymore. And I think I need new shoes or something. That was a really long shift but my feet and lower legs do NOT feel right.
I got on the computer and finished a paper for school. When I went to bed my legs felt even heavier than before.
I woke up the following morning and my legs were numb from the waist down. Uh oh…something isn’t right.
I went to the hospital and three days, an MRI, and a lumbar puncture later I was diagnosed with Multiple Sclerosis.
I was devastated. My world just…stopped. Pretty soon I couldn’t walk or see and my hands didn’t work. I couldn’t do things like grasp a pencil. I lost control of my bladder.
I had gone from a 20 year old dean’s list student newlywed to a shell of a person. I fought against my disease for years. I had flare up after flare up. None of the meds seemed to help. I saw several different neurologists. My marriage started to crumble. I had to drop out of school.
I started pouring myself into volunteering for the local choir program. I was severely depressed and needed to do SOMETHING. Then I started directing the musicals there. I found a passion in this even though it would wreak havoc on my body every time we got to the performance week. I started a small side business teaching voice privately.
I continued to have one episode after another, with a little bit of bounce back in between.
Then I started having kids. My children became my life. I was destined to be a mother. When I was pregnant with my third child, my body started quitting. I developed spasticity across the right side of my body whenever I walked. The pain was absolutely unbearable.. I had had muscle weakness previously and had to use a cane, walker, and eventually a wheelchair periodically. Now I was bound to a wheelchair fulltime and had to be on bed rest for about 3 months.
This caused the marriage I was already struggling in to further deteriorate. I was blessed with a healthy baby boy, but during my pregnancy my neurologist at the time was cold. He was unfeeling and uncaring at the new low I was experiencing with my body. I was living in a hellish nightmare of pain and he just kept saying “MS DOESN’T CAUSE PAIN“. I decided to find a new neurologist.
This was the beginning of reclaiming my life.
I got involved with a Physician Assistant who was supportive and kind. She sent me to a neuro opthamologist who discovered my optic neuritis was bilateral, which was unusual in MS patients, so she sent blood work to the Mayo Clinic.
I was finally given a MOG diagnosis after 10 years of struggling!!!
I went to a new neurologist who is well versed in MOG-AD. I got put on the CORRECT treatment. I left the abusive home situation I was in. I started prioritizing my health and working with a personal trainer. I had a friend come into my life who believed in me…and made me start believing in myself.
And I flourished.
I have lost 60 pounds and can now deadlift more than I weigh.
I am a happy and thriving woman running an internationally successful voice studio and I recently started modeling.
My entire life changed with a correct diagnosis and the correct outlook on my life. My last MRI shows evidence of healing on my old lesions. I haven’t needed to use my cane, walker, or wheelchair for over a year. I hope I never need them again.
We are warriors. Just because we are fragile does NOT mean we are weak.