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LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.

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“Momming” with Relapsing MS LEMTRADA patient blogger: Rachel By Rachel, Wife, Mother, Domestic Engineer • December 22, 2016

Children of LEMTRADA® patient, Rachel

Being slapped (maybe more like sucker-punched) with a relapsing MS diagnosis as a young new mother was nothing short of shocking and devastating. My first child was only a toddler, and everyone knows how simple and easy it is to care for a 2-year-old, right? Hah! I remember thinking about how I wouldn’t be able to participate in my child’s life and do things a “normal” mother would do. So much for our walks to the park to catch baby frogs or playing at the playground. At the time, I could barely make it safely through our own home.

Life as we knew it had been completely turned upside down and I grieved the fact that my family would have to suffer with the repercussions of my RMS. That wasn’t in my plan and it wasn’t what I wanted for us. Wasn’t it bad enough that I had to figure out how to deal with this “new me”? I wondered how I was going to take care of my child—let alone myself—when I was so debilitated. At the time, my husband and I were also trying for a second child. Needless to say, that had to wait.

Well, let me tell you one thing about me—I am one persistent person and I was determined to do whatever it took to change my situation. I have always loved a challenge, but I have to admit this one was a bit intimidating. I went through months of physical therapy to learn how to walk and use my body again. As pathetic as I felt not being able to exercise like I used to, I also dragged myself (figuratively and literally) to the gym I loved so much and attempted to keep moving and working out. Motion is lotion, right?

Now let’s fast-forward a few years. Despite my relapsing MS, my husband and I were able to complete our family with two more children. We now have 3 remarkable children. Our oldest daughter is 13, our middle daughter is 10, and our youngest is a 9-year-old son. Our middle child is our adopted child while the oldest and youngest are our birth children.

You know how they say that relapsing MS is “quiet” during pregnancy, even though you’re off treatment? Well that wasn’t the case for me. I even had MS relapses while I was pregnant with our son.

From my diagnosis until my son’s first birthday, I continued to have multiple relapses. There were times when caring for my children was so difficult that I was worried about whether or not my care was even sufficient enough to keep them out of harm’s way. What if I couldn’t “catch” them? I swear, children seem to have this magnetic pull into danger! Parenting is not for the weary. Throw active RMS in there and I like to call it “Momming—Level HARD.” My family needed me, and it literally broke my heart when I was unable to play with my kids or care for them.

That’s when I worked closely with my neurologist again. And I always stay in touch with my whole health team, both when I’m experiencing relapsing MS symptoms and when I’m just keeping up with my overall health. I strongly believe that communication is key when it comes to managing my symptoms and leading a healthy lifestyle. But regardless of my symptoms or how I’m feeling in general, I always try to keep my head up, for both my family and myself.

By staying positive and keeping my health in check, I hope to set an example for my children. And I’ve found planning to be helpful as well. In fact, planning, budgeting and conserving energy have become key in living everyday life! I’ll opt to have healthy groceries delivered and plan out meals ahead of time, instead of going to the grocery store last minute. And you know what else? No one seems too upset if I’m not up for cooking and I declare it “pizza night” in our house.

Having relapsing MS has taught me many, many things and I’m not as hard on myself as I used to be, because perfection is the enemy of good. Life, including life with relapsing MS, is perfectly imperfect, and that is just fine by me. I’ve learned to appreciate life—both the good and the bad parts. RMS has taught me to live with purpose and to make the most out of every day and every moment.

When it comes to spending time with my family, I always try to remember that having a mom with RMS significantly impacts the lives of our children. While at times it gets tough and it’s hard for them to understand, it’s also been a learning experience for them. I’m proud to say that they are more mindful and compassionate of others—and I think that my condition has helped to teach them that. My oldest daughter, bless her heart, tells me that I’ve been a role model for her on how to focus on the positive and forge ahead despite life’s hurdles.

It hasn’t always been easy, that’s for sure. But my husband and I have always encouraged our kids to talk about their feelings with an open door policy. Just as I work through my feelings of being scared or angry, they need the opportunity to express their feelings too. We don’t try to hide my condition. Instead, we discuss it as openly as possible. I think that’s been helpful for their understanding.

Parenting is not an easy job. Anyone and everyone who’s ever tried it will tell you the struggle is real. That is some truth right there. But parenting with relapsing MS is even more challenging. However, RMS doesn’t stop you from being a great parent. In my opinion, I think it has the potential to make you an even better parent!

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  • FAMILY



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