Welp.
I fought it for months, but here I am. Getting my first infusion for my new MS medication – Tysabri. The one that comes with a slight risk of brain infection. But let’s start from the beginning, shall we?
I have never hid my MS, but it’s easy to forget I have it. I look completely functional. I jog three times a week, I am learning tennis, I run errands all over town, and my day is scheduled down to the minute. I can make dinner in 10 minute increments between online classes I teach. I run my homeschool, my business, and my life like a boss.
Heck, even I forget I have MS sometimes. I’ve been on Copaxone for 15 years since I was diagnosed, and except for a relapse in 2007 when I was initially diagnosed and one in 2014, I have felt fine. Each year, my MRI shows the same thing – stability. The Copaxone has been doing its job of halting my progressive disease in its tracks.
Except this past MRI was different.
When the results came in, I read them as I always do, even before I get the phone call from my doctor’s office, trying to decipher what they mean myself. This time, the radiologist’s report was a bit different than usual – a new lesion was spotted on my brain. Another lesion had gotten bigger. All was not well.
I do not do well with change. I try to adapt, but its a slow-moving process. So this. This felt strange.
I waited patiently to speak with my doctor, and when we finally connected, he confirmed what I had read. He had seen disease progression on my MRI. My current medication wasn’t strong enough. He spoke to me about my options – giving me the pros and cons of the medications I could switch to. After discussing it with him, I chose the one he recommended. Though it comes with a slight risk of brain infection that I mentioned above, it only presents that risk if you’re JC virus positive, which I was not at the moment, and they would continue to monitor me with regular bloodwork to help minimize the risk.
I still wasn’t fully acknowledging the reality of what he was saying, and it was two full months before my insurance approved the medication and all the paperwork was filed. It wasn’t until the infusion center started calling me every day two weeks ago that it hit me. After 15 years, I had to switch to a more serious medication, one that comes with more serious risks, the kind you hear about in the disclaimers at the end of drug commercials.
I ignored the phone calls for a few days. But then my doctor called. My insurance called. Why hadn’t I started the new medication?
While my daughter ice skated this past Monday, I finally connected with my doctor and my thoughts finally came tumbling out.
But I feel fine, I insisted. I’m doing ok, aren’t I? Why did I need to switch? Maybe I should go off all medication and take my chances? I feel fine, I insisted again.
She calmly answered my questions one by one. Even though I feel fine, my MRI showed otherwise. That’s why we do MRIs, she calmly explained. Sometimes what we see is not the reality of what’s going on inside. I know I shouldn’t judge others by their outside, but apparently I shouldn’t judge myself either.
I felt like my body was betraying me. How could this be happening?
I’ve always told my kids and my students, “We are not in control of our lives. At the end of the day, it’s G-d who is in control.” But I tried to exert control where I could in my life nonetheless – I plan my calendar down to the minute and get anxiety when things don’t go according to plan. Here was another reminder – staring me in the face and refusing to look away until I acknowledge its presence – I. AM. NOT. IN. CONTROL. I cannot just ignore the problem until it goes away.
If someone asks me a question about organizing, I have a lot to say. If someone asks me a question about teaching elementary-age students Chumash, or my thoughts on education in general – I have an answer. But this – I had no answer. I could not explain this. I have no road map for what to do next.
After much worrying, I decided to trust my doctor and go with my gut. I picked him after researching neurologists for months, and I picked him for moments like this – when I need his expertise and feel comfortable trusting him. It feels good to have the decision made. Hemming and hawing is my modus operandus, but once the decision is made, there is a certain sense of calm that comes over me.
I heard someone say on Instagram the other day something that resonated – “This will either be good, or it will be bad, but either way, it will be.”
So here I am, getting my first infusion. Getting here wasn’t easy. But I’m here now. Taking the first tentative steps in one direction, and then leaving the rest to G-d.