If having Multiple Sclerosis has taught me anything, it’s to try to embrace change, however much I dislike it.
I had another MRI in April of this year, my first in a while. I finally had my MRI follow up appointment with my neurologist. I pretty much knew what I would hear in the appointment. For a while now, my symptoms have been more frequent and lasting for a longer period of time. I’ve had more difficulty walking and a lot more pain in throughout the day. I know my own body very well, so I knew that something within me had changed, that the MS was different.
Shortly before my appointment, I got my MyChart MRI results. I clicked open the results with some apprehension. I read the findings and they said what I feared: there were new lesions and even older ones that they hadn’t seen before. I got the results a couple of weeks before my appointment and the nervous feeling had plenty of time to grow within me. It was a flutter in the back of my mind that was always there when I was trying to sleep or work. The last time I had had new lesions, they had changed my medication from Copaxone to Aubagio so I knew that a change was coming. The tier three meds are awful so I wasn’t looking forward to that.
I recognized that feeling. It was the one that I had carried with me before I was officially diagnosed with multiple sclerosis. I knew that changes were coming, but I knew that I would handle it differently this time. When I was diagnosed in 2013, I fell into a deep depression and became suicidal. I knew that it would be different this time, that I would not go down that path, as hard as it got. I would go on living any way I could.
I met with the resident neurologist first and she took me through the usual tests and stretches and asked how my symptoms were. One of the tests I was ready for. I always practice ahead of time. I had to walk across the room heel to toe and I’ve only ever been able to manage a step or two every time I’ve attempted it since I was diagnosed in 2013. Well, if there is a positive from the appointment, it’s that I finally managed to walk across the room heel to toe. Now, it was a small room, but that doesn’t take away from the mild feeling of accomplishment that I felt.
The resident doctor showed me what my new MRI looked like. I did see some improvement. My old lesions were still greyed out, the golf ball sized lesion that looked like a moon within a sea of stars no longer visible. She showed me where the new lesions were and they looked harmless. There was only a scattering of pale stars in the sea of black and grey, nothing like I’d seen before. That was also a positive.
My neurologist came in after my tests were done and she confirmed what I had already known: there are new lesions and I would need a change of medication. She asked me what I was open to. I told her that my brother had to have infusion therapy. As long as I didn’t have to have that, I was open to anything she was willing to try. She told me that she would be putting me on a drug called Mavenclad. I would take it twice, six weeks apart instead of every day. It will suppress my immune system so that it will have to rebuild itself.
It can cause shingles, hepatitis A and B, cancer and liver problems and a host of other issues like flu and cold symptoms, hair loss and pain. I’m no stranger to pain. I would have to pay attention to my health while taking it as I would be at risk for infections. I will take it once a year for one week and then have a four-week break and then I take it for another week. If all goes well with the MRI’s and establishing a baseline, I will only have to take it every two to four years.
Even though I knew that a med change was coming, knew without a doubt that I would have to climb another flat mountain of some sort, it was still a lot to take in. During the appointment, I felt like I was in a sea of calm as my neurologist explained that I would need a shingles vaccine and different types of bloodwork and tests done before I could go on the Mavenclad. She explained that I would have a meeting with one of the MS nurses in September, after I had had all the testing and vaccines done, and she would take me through the process of flushing the Aubagio from my system. I nodded and tried to take this all in, the sea within me starting to grow in volume.
I called my mother once we got to the car and all throughout it, my voice was calm and measured when my insides were filling with the water of my emotions. My husband drove us to the post office where I had to pick up a package and after the call my mother texted me and told me how brave I was. After that, the floodgates opened. I sat there in the car and cried while my husband held my hand and told me that it would be okay. I was so angry and despondent.
“I don’t understand,” I said to my husband. “I’ve done everything I can do to fight this. I’ve changed my diet, I workout three times a week and swim when I can. I’m more spiritual now and have really embraced my life. Why doesn’t any of that make a difference?”
“Because MS doesn’t care,” he said. “It doesn’t care what you’ve done to fight it. The MS only does what it wants. You’re still doing really well, though. You’re not walking with a cane and you’re able to take care of yourself. I’ll take care of you too.”
We got my package and drove home. On the way there, I made a decision for myself. I would not let depression take me away like it had before. I had become a shell of who I was and was too content to wander inside the dark forest. I remembered that time well and could not to do that to myself again. I couldn’t let the fact that my life was changing again and that parts of it were beyond my control make me lose sight of what mattered and what I had in my life that was worth staying here for.
I would allow myself a day or two of grief and then I would get on with living. There was no point to letting the grief go on any longer than that because it wouldn’t accomplish anything. My life may be changing again and a new flat mountain may be in front of me, but I can’t lose sight of everything that I do have that I didn’t have in 2013. I have a loving and supportive husband; I have support from my family and friends and so many other people.
My life was so different from the one I was living during that time. Yes, the landscape may be changing once again, but I am stronger now than I was all those years ago. I have to embrace the changes that are coming and I can’t afford to be angry with myself or the games that the MS is playing with my body. I would do what I could to prepare myself for the road that was ahead of me.
I had my first shingles vaccine the other day and, in a way, that was the first step towards a better and stronger me so that I can be ready to climb a whole new mountain. I know that I’m not alone and that I got this, even if it doesn’t feel like I do. I need to remember that my life is a magical thing and that, even during times like these, there is joy to be found within it.
All I have to do is sparkle on so that I have light with me while I’m climbing the mountain.