This month in honor of MS Awareness Month, we are introducing you to Real People with MS. Today Modern Day MS writer, Sam, is sharing her interview with fellow contributor Rachael.
How long have you lived with MS?
“I was diagnosed at the end of May 2007, but I can trace symptoms back to 2003. Nine or thirteen years depending on how you look at it.”
What medication and/or natural treatments do you use or have you tried?
“I started out on Copaxone and used it for six years, but was still progressing and had terrible injection site reactions, so they took me off. Next, I tried Tecfidera, which was a disaster for me. Then I was on Gilenya for about a year before I quit so that I could safely have a baby. I was never on an interferon drug because it’s contraindicated for folks who already have clinical depression.”
“I’ve been on a lot of different medications to help with symptoms, with mixed effectiveness. Nortriptyline really helped me with nerve pain in my legs. Baclofen helped with muscle spasms, but it made me too tired to function. My MS caused a seizure disorder and I’ve tried many different seizure medications, but none of them were particularly helpful. “
“As for natural treatments, I take 10,000iu of Vitamin D daily, as well as a multivitamin. Medical marijuana has been helpful for neuropathic pain, seizures, and muscle spasms. It was easily available when I was first diagnosed and living in CA. I’m very glad that it’s finally legal in Illinois.”
“I’ve tried lots of diets. BestBet, Wahls, Paleo, Swank, McDougall. It ended up seeming pointless. Wahls Way and Paleo were helpful for me in regard to improving energy levels, but none of these diets stopped my seizure activity or neuropathy. There’s a lot of value in adding more veggies to your diet, regardless.”
How has your life changed since being diagnosed?
“In every imaginable way. I’m now married to the man who was holding my hand when I was diagnosed, and we have a beautiful 10 month old son. We moved from Los Angeles to my husband’s hometown of Chicago. We own a house instead of renting. We have a dog, despite the fact that I foster kittens.”
“But the biggest change has been going from being a full-time law student with a part time job to being a disabled stay at home mom. That’s what happens when you end up with an uncontrollable seizure disorder caused by MS. It’s definitely forced me to learn self-compassion. I didn’t even know the concept existed prior to diagnosis. I also have much better mental health because I have chosen to go to therapy to learn to cope with seizures and disability and to help with these massive transitions.”
How do you find balance being a wife, mother, writer with MS?
“There is so much irony in this question because MS literally messes with my balance when it comes to walking. The answer is that I don’t. I don’t even attempt balance. I just prioritize life and play whack-a-mole with problems.”
Do you think MS has made you stronger?
“Not a chance. Obstacles don’t make you stronger. They give you an opportunity to see what you’re made of. MS has pissed me off, but it’s my determination to live a good life, my persistence as an individual, and my active choice to make good decisions for my physical, mental, and emotional health that have made me a stronger person. Well, that, and the love of my husband. If he tells me I can do something, I tend to believe him.”
How do you handle/cope with bad days?
“Depends on the kind of “bad.” But I have been known to sleep through a day here and there. You gotta listen to your body, you know? As for emotionally tough days, where I can do some things but not others and am frustrated — I write. It’s cathartic. I also meditate. I use medical marijuana when it’s helpful. I take naps when my son naps or drink an energy drink. Or both.”
Any advice for someone who’s newly diagnosed?
“Learn to educate yourself on every medication and procedure that’s suggested to you so that you can advocate for yourself. Remind yourself that you’re paying your doctors for help. If you have a disagreement with one based on what you want to do with your body, you don’t owe them your obedience. You’ve got to do what’s right for you.”
What saying/ quote inspires you?
Please share Rachael’s story to teach others that multiple sclerosis does not look a specific way. You might interact with people silently suffering every day. You may also enjoy Vanessa, John, Maria, Teresa and Yvonne’s Real MS Stories.