Finding the right words to say can be hard sometimes. This is especially true if you have multiple sclerosis. Sometimes the brain damage leaves you stammering mid-conversation. You stand there in an ever-increasing silence. You can almost see the word in your mind. You can nearly envision the way it looks when it is written down. You can even remember times you have used it in a sentence before. Yet, you are forced to move on and find a different, more boring word. Then, other times, in moments of great stress or anxiety, your mind is in shock and no words will come at all.

Friday morning I made a very raw and emotion-driven post. I was essentially struggling with how much my condition has worsened in the last two years since my diagnosis. I have fought with everything in me. I have cried hundreds of tears while pushing through workouts. I have a physical therapist and a psychotherapist. I adhere to a strict diet. I use mobility aids. I take all the right vitamins and use the prescriptions my doctors recommend. I have done everything I am supposed to do, yet, continue to get worse.

One of the other things I do to feel better is this blog. My therapist recommended keeping a written journal. I actually love sitting down with a pen and paper and writing. I have several notebooks of scribbles of song lyrics and book quotes. I am a sucker for pretty notebooks and journals and have a small collection of them that will most likely never be filled at this point. MS has taken away my ability to grip a pen. I am still able to write, however, I am unable to write more than a few words at a time without taking a break and the more I write the less legible it gets. That is basically how this blog was born. If my journal was going to be typed out online, why not share it with others. Honestly, it has been the most therapeutic I have done since my diagnosis.

I was in a decent place after my post-Friday morning. Work was busy, I would be leaving early in the afternoon to run home to let my dog out, then bolt across town to a doctor’s appointment, then to the grocery store before heading home. I like being busy. It puts me in a better mood and occupies my mind.

All was well as I pulled into the parking lot of the office building where I see my psychiatrist. I sat there thumbing through the last chapter of the book he had recommended I read trying not to feel guilty about waiting until the last moment possible to finish it. I received a text notification from a work friend, Justin, an attending radiologist I have known since his first year as a resident. He was the first person to see my initial MRI and also the person who broke the news to me that I had a demyelinating disease. He had sat down earlier in the week and looked over my follow-up MRI with me. According to him, it looked stable. There had not been a detectable change from the previous. This was disheartening. Deep down I was hoping for news of shrinking or disappearing lesions. Deep down I was hoping for a miracle. I had no reason to expect one. None of my symptoms had gotten any better since my last scan, in fact, I was incredibly worse off.

The news that my disease was stable took a moment to process. I had expected my scan to be worse, but it was not. I should be jumping for joy. According to the off-site radiologist who dictated my MRI and Justin, I was exactly where I was nineteen months ago. I guess that was the problem. All my hard work and all the toxic infusions destroying my immune system had done nothing to help make me better. But, by definition of MS treatment, that is a success. At the end of the day, it is all meant to simply prevent the disease from progressing and not make it better. According to the initial reports, I was actually a success story.

The stable report also made sense to me since I had been Ocrevus. It would seem I was just another statistic of the treatment. Another person who reported worsening symptoms while on the medication, yet did not have the MRI evidence to back it up. I would be adding to the success rate of the treatment even though there are times I am hardly able to walk, something that was not as much of an issue before Ocrevus.

Nevertheless, Justin wanted another opinion on the MRI. He is trained to evaluate images of bones, muscles, and joints. He wanted a neuroradiologist, someone trained specifically in brain and spine images, to look at it. He messaged a neurorad we both trusted to give it one more look. That was the text I received Friday afternoon.

Justin asked if I could come to his office. I told him I had already left for the day. He said the neurorad had messaged him back and he and I could go over it on Monday. My reply was along the lines of, “I am getting ready to step into my psychiatrist’s office, so if you have bad news there is absolutely no better time than now to break it to me”.

According to the neuroradiologist, the lesions on the left side of my brain were more prominent. It needed to be taken into account that my newer scan was done with an MRI machine with a stronger magnet. However, if my symptoms were worsening then it was evidence my MS was slightly progressing.

That was the first time I had received bad news about my MS that I did not cry, at least not immediately. I felt numb, and that scared me more than the actual news. I only remember thinking, “how?”. “How” when I have done everything I am supposed to do? “How” when I have done more than most people even attempt to do? “How” when I am exercising, eating right, taking supplements, taking medications, seeking therapy, and trying my hardest is it getting worse? That is when you want to quit. That is when you want to give up. That is when every fiber of your being is tested and you have to decide if it is worth it to keep trying.

My psychiatrist asked me how I felt about the news. I sat there for a very long, silent moment. He was looking at me, and I was looking through the wall behind him. I could not find the words. I muttered something about being sad just to break the silence and it seemed pretty fitting for the situation. He said that was understandable and he would probably be pretty pissed on top of it if it was him. He does not have MS and the best word he could find was “pissed”. I didn’t feel so bad after that.

We had a good chat. I did not leave happier, but I at least left feeling more capable. I did my last loading dose of Kesimpta that evening. The weekend had its usual ups and downs, but for the first time in a long time, I had a better grasp of things. It is hard to say I am looking forward to the next chapter, but I’m definitely not looking back on the last one.