It was one year ago today. I’ll never forget it. I woke up after celebrating a friend’s birthday and my right foot was numb. I thought I slept on it wrong, but the feeling didn’t come back. Thanks a lot Multiple Sclerosis.
From February through November I dealt with numbness and pain in my feet that climbed up to my legs that climbed up to my hips and then my chest and then my arms and, finally, my hands. I worked with numb legs. I would stand on our set unsure of how long I could hold my balance. I would type scripts and stories with no feeling in my fingers, but lots of pain shooting through my bones. I would take calming breaths, but I couldn’t feel my lungs.
At home I couldn’t pick up my little boy because I couldn’t feel my arms. One day I was furious because when I touched the sweet, soft skin of his cheeks, it felt like sandpaper. My nervous system stripped me of the ability to feel the softness of my own child’s face? Talk about cruel.
If you’ve ever been in pain for a long period of time you know it’s exhausting, both physically and mentally. MS is a disease that makes you tired no matter what, but throw an exacerbation in the mix and PHEW! No amount of napping can truly renew your energy.
I was born a positive and happy person, but this flare of up of my Multiple Sclerosis threatened to take a bit of my shine away…and that made me mad. One day after work, my husband came home and I looked at him and said, “I think I just need to cry.” So he sat down on the couch, I put my head on his chest, and I cried. He promised me it would get better, although at the time we didn’t know if better meant that I would regain all feeling or if it simply meant I would adjust to the pain and just get used to it.
After 5 rounds of powerful steroid infusions (which made my mouth taste like pennies, food taste different, and caused insomnia), I felt a small bit of relief. However, the majority of my numbness and pain remained.
My neurologist and his assistant took on my insurance company when I was denied multiple times for a new medication, Ocrevus, to treat my MS. The reason? Insurance said I needed to “fail” on TWO medications before I could begin the Ocrevus treatment. WHAT?! Fail?! As in “get worse” before I could get better? Let’s just say I had a crash course in “step therapy” and the frustrations it can cause those of us with chronic illness (or any illness for that matter).
After four denials, I was approved for my Ocrevus infusion. It’s a five hour infusion twice a year to treat MS. There is no cure for multiple sclerosis, but this medication can help keep symptoms at bay and hopefully slow the progression. After my first full dose, pain eventually began to subside in my body. My numbness started to disappear.
In November, my hands were the last part of my body to regain feeling. Well, most of the feeling. I don’t think my hands will ever be totally normal again. Several times a week, a few of my fingers go numb. Several times a week, there’s a tightness in my hands threatening to break out into a painful grasp…but it doesn’t happen. It’s like my MS is reminding me that it COULD flare up if it wants to, but it’s choosing not to.
For the last year due to pain and numbness, I haven’t been able to work out. Walking was out of the question and pushups, burpees, lifting weights…just not possible with numb hands, wrists, and arms (…and I might be the type of person who eats my feelings – WHY DO CHEESEBURGERS AND PIZZA MAKE ME FEEL BETTER?). I look in the mirror and sometimes I’m surprised by what I see. I’m heavier. I’m not in the shape I want to be in. I don’t feel like I look like, well, me. But you know what else I see when I look in that mirror? I see a survivor. I see a fighter. I see a woman who worked through a year of numbness and pain and came out on the other side mentally stronger than when she went in.
…and now I’m ready. 2019 is my year. One year ago today I lost feeling in my body and I went on the journey from Hell, but you know what? I never once faced that journey alone. By my side was my husband, my son, my family, my friends, and even viewers who just sent me messages to cheer me on. In 2019 I’m going to get back to me, but I think it’ll be an even better version of me inside and out…and I can’t wait to meet her. Thanks a lot Multiple Sclerosis.
***Would you like to join me on my journey? How about walking with the WAVY Warriors at Walk MS on April 7th in Norfolk? JOIN OUR TEAM AND/OR DONATE BY CLICKING HERE.***