One year ago today, I began to lose the feeling throughout most of my body because of a flare up of my multiple sclerosis. It was a year of numbness, pain, strength, humbleness, and gratitude. In this blog I share a raw look at my journey and my plans to make 2019 “my year.”
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.
|Read on: Multiple Sclerosis: Flare up and fighting back|