My journey with multiple sclerosis, which began in 2015, has been one of challenges, resilience, and gratitude. In the years that followed, I faced numerous relapses and tried various disease-modifying therapies (DMTs). Regular MRIs became a routine part of my life, and I focused on managing MS the best I could while juggling my teaching career, maintaining friendships, traveling, and handling daily routines of life. However, in late 2019, unexpected changes began to unfold.
My MS Story
by Katy Haughn
Suddenly, I was grappling with severe cognitive impairments. Tasks that once seemed second nature became nearly impossible: I mixed up numbers and letters, experienced aphasia, and felt completely disconnected from my thoughts when writing or typing. Overstimulation from lights and sounds overwhelmed me, turning my brain into a chaotic whirlwind and making it almost impossible to process information. This resulted in crushing fatigue that affected nearly every aspect of my life.
What began as a sick day to visit my MS doctor led to a series of tests, including MRIs. As I was gathering my belongings from the locker in the dressing room, the radiology tech walked in and said, “You should not drive home.” The MRI revealed a large, enhancing lesion on my brain—a tumefactive lesion, which is rare in MS and mimics the symptoms of brain tumors. To put it in perspective, typical MS lesions range from about 2-10 millimeters in size, about half the length of a staple to the head of a thumbtack. My lesion measured 2.4 centimeters, about the diameter of a quarter.
I never imagined my initial sick day would mark the beginning of a new era in my life. I underwent not three or five, but TEN rounds of steroids—an essential intervention, as the next step would have been a brain biopsy. The following months were a whirlwind of starting a new DMT, attending numerous doctor visits, and undergoing frequent brain MRIs. Intensive speech and language therapy became a regular part of my life, with sessions three to four times a week, continuing until the onset of the pandemic.
Financial challenges paralleled my medical struggles. I initially exhausted all my sick days and faced a long-term disability plan that included a complex “pre-existing condition clause.” I navigated applying for SNAP (formerly, Food Stamps) and months later for Social Security Disability Insurance (SSDI). Despite these hurdles, the unwavering support from friends and family, the devoted care of my healthcare providers, and the resources I’ve received have profoundly demonstrated the impact of community and love. With that support, I could complete the Driving Assessment and Rehabilitation Program as my doctor recommended, allowing me to reclaim my independence and freedom. The pandemic also brought unexpected blessings, providing additional assistance during this difficult time.
While MS has closed certain doors in my life, it has also opened an extraordinary new one. I am incredibly thankful for the connections I’ve formed with some of the most kind, compassionate, and generous people—individuals I likely would never have encountered without MS. My passion for helping others has grown into a commitment to advocating for those living with MS, and as I look to the future, I do so with determination and hope.
My journey with multiple sclerosis, which began in 2015, has been one of challenges, resilience, and gratitude. In the years that followed, I faced numerous relapses and tried various disease-modifying therapies (DMTs). Regular MRIs became a routine part of my life, and I focused on managing MS the best I could while juggling my teaching career, maintaining friendships, traveling, and handling daily routines of life. However, in late 2019, unexpected changes began to unfold.
Suddenly, I was grappling with severe cognitive impairments. Tasks that once seemed second nature became nearly impossible: I mixed up numbers and letters, experienced aphasia, and felt completely disconnected from my thoughts when writing or typing. Overstimulation from lights and sounds overwhelmed me, turning my brain into a chaotic whirlwind and making it almost impossible to process information. This resulted in crushing fatigue that affected nearly every aspect of my life.
What began as a sick day to visit my MS doctor led to a series of tests, including MRIs. As I was gathering my belongings from the locker in the dressing room, the radiology tech walked in and said, “You should not drive home.” The MRI revealed a large, enhancing lesion on my brain—a tumefactive lesion, which is rare in MS and mimics the symptoms of brain tumors. To put it in perspective, typical MS lesions range from about 2-10 millimeters in size, about half the length of a staple to the head of a thumbtack. My lesion measured 2.4 centimeters, about the diameter of a quarter.
I never imagined my initial sick day would mark the beginning of a new era in my life. I underwent not three or five, but TEN rounds of steroids—an essential intervention, as the next step would have been a brain biopsy. The following months were a whirlwind of starting a new DMT, attending numerous doctor visits, and undergoing frequent brain MRIs. Intensive speech and language therapy became a regular part of my life, with sessions three to four times a week, continuing until the onset of the pandemic.
Financial challenges paralleled my medical struggles. I initially exhausted all my sick days and faced a long-term disability plan that included a complex “pre-existing condition clause.” I navigated applying for SNAP (formerly, Food Stamps) and months later for Social Security Disability Insurance (SSDI). Despite these hurdles, the unwavering support from friends and family, the devoted care of my healthcare providers, and the resources I’ve received have profoundly demonstrated the impact of community and love. With that support, I could complete the Driving Assessment and Rehabilitation Program as my doctor recommended, allowing me to reclaim my independence and freedom. The pandemic also brought unexpected blessings, providing additional assistance during this difficult time.
While MS has closed certain doors in my life, it has also opened an extraordinary new one. I am incredibly thankful for the connections I’ve formed with some of the most kind, compassionate, and generous people—individuals I likely would never have encountered without MS. My passion for helping others has grown into a commitment to advocating for those living with MS, and as I look to the future, I do so with determination and hope.
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