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‘Inappropriate Momma’ With MS Uses Humor to Cope and Connect
From riding a Segway to experimenting with marijuana for MS pain, blogger Meg Lewellyn lives with MS her own way.
By Cathy Cassata
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Meg Lewellyn was running eight miles a day, six days a week, when she learned she had relapsing-remitting multiple sclerosis (MS) in 2007.
“Running was my time. My kids were 9, 7, and 5 years old then, and I was running around like crazy with them and working at my small photography business. I didn’t have time to slow down,” Lewellyn says.
Despite experiencing a constant feeling of pins and needles in her right foot, she ignored the symptom for months.
“I assumed I had a pinched nerve from running. But my breaking point was when I was at the playground with my kids and realized I was peeing my pants,” says Lewellyn.
She went to see her gynecologist, who referred her to a neurologist. After an MRI scan of her spine, the neurologist diagnosed her with fluid in the spinal cord (transverse myelitis), which he assumed was the result of a virus.
“He said I’d recover in six months to a year, but my symptoms were getting worse. When I went back to see him a few weeks later, he did a brain MRI. That’s when he determined I had MS,” Lewellyn says.
Nontraditional MS Mobility Device
After seeking out an MS specialist, Lewellyn decided to take Avonex (interferon beta-1a), an injectable drug for multiple sclerosis. But within three months of her diagnosis, she needed a cane to walk.
“I was hit with flare after flare. Here I was, a person who had been running miles a day, and now I was using a cane. Everybody wanted me to get a scooter to help me get around, but I didn’t want a scooter because I didn’t want people to physically look down on me,” says Lewellyn.
After seeing a boy with polio riding a Segway (a two-wheeled, self-balancing scooter that’s ridden while standing) at her children’s school, she was inspired to rent one to see if it would work for her. It did.
“I loved it and used that and my cane to get around,” Lewellyn says.
But because Lewellyn didn’t look “sick,” she sometimes got reactions from other people that shook her. For instance, one time when she was riding her Segway in Costco and “This woman who was overweight and struggling to get around the store said, ‘No fair. I want one.’ My then-12-year-old son, who is really well-behaved and respectful to adults, said, ‘Really? Cause my mom wants legs that work. You want to trade?’ After I told him not to speak to grown-ups like that, I gave him a high five,” Lewellyn says.
Writing to Share and Meet Others With MS
Experiences like this got her started writing about her life with MS, and eventually Lewellyn decided to post her stories on a blog, which she named BBHWITHMS.
“I was going through a divorce. It was a hard time, and I decided I wanted to do something with these stories,” she says. “I love that my blog provides the opportunity to meet other people with different lives, different forms of MS, and different stories.”
She believes her readers appreciate her writing style. “I admit I’m inappropriate on my blog. That’s kind of the point. I talk about some of the symptoms I live with and how MS affects my life. But I also talk about more personal topics, like how vaginal stimulation helps my MS symptoms, a naked 911 phone call, and so much more.”
Reduced Stress, Reduced Symptoms
Six months after her divorce, Lewellyn stopped using her cane and her Segway.
She eventually went off of Avonex and tried Tysabri (natalizumab) but had an allergic reaction to it and stopped taking it. She is not currently on any MS disease-modifying drug.
“People who haven’t seen me in a while will comment on my physical improvements and ask if I've found a new medication,” Lewellyn says. “My standard response is, ‘Nope, I got a divorce.’ As crazy as it may sound, being diagnosed with MS gave me the strength to finally pull the plug and leave unhappiness behind.”
“The last years of my marriage were filled with stress and anxiety, and replacing that with happiness has definitely helped a ton,” she adds.
Pain Management Is Still a Struggle
While Lewellyn’s walking ability has improved, her pain related to multiple sclerosis has worsened.
“My pain the last two years is off the charts. Before that, I would start the day off well after a good night’s sleep, and then by 3 or 4 in the afternoon, my legs would be on fire. But now I’m waking up at that pain level, so the pain is robbing me of the good parts of my day.”
Lewellyn has tried several medications for pain, including antidepressants and methadone, but none have provided long-term relief.
Now she's looking into medical marijuana products.
Experimenting With Medical Marijuana
“I’m lucky that I live in a state where it’s legal,” Lewellyn says. “All the responses I get from my blog posts make me wonder why this isn’t legalized in every state for people who are sick.”
Lewellyn blogged about her first experience going to a medical marijuana shop near her home in Seattle, where an employee explained the different plants and strains to her. She left with CBD (cannabidiol hemp) oil, which is generally consumed orally but sometimes applied to the skin; mint lozenges containing THC (tetrahydrocannabinol, a component of marijuana); and a vape device and cartridge of CBD oil to be vaporized and inhaled.
“Nothing was earth-shattering, but I could feel a difference,” she says.
After posting about it, Lewellyn received a lot of comments from people sharing what works for them and what doesn’t.
“It’s so great to talk about this with other people living with MS and other chronic pain and illnesses. I’ve learned so much already and continue to be excited about the options. I am optimistically positive about finding something that works.
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