I am considered refractory. Living with myasthenia gravis (MG) is difficult in and of itself, but finding a therapy that provides help in living each day can be an extra challenge. I’ve been diagnosed since August 2019. During that time, I have received four different infusion therapies, with seven different dosing schedules. I have also received subcutaneous delivery therapies to help reduce the time I am in the infusion center.
Not all individual patients react the same way to a therapy. Some patients don’t react at all. It may seem there is a positive result at first, but it’s not long term. Then it fails.
That’s where I’m at. I am considered refractory. By definition, refractory means stubborn or unmanageable. My instance of MG isn’t cooperating with the science available today. It’s frustrating.
However, when you live with MG long enough, you learn about the ebb and flow of the disease. And you learn about the ebb and flow of science, too. It’s not perfect. But science is persistent.
For myself and other individuals living with MG, this becomes a hallmark of our personality. Each day we get up and we point our finger into the wind to see what direction it’s blowing, and then we move forward. This is a common theme for many rare disease folks, both inside and outside of MG.
Dealing with unpredictability
Recently, I needed to move some of my possessions from my car into storage. It was a warm Sunday afternoon, around 90 degrees. The sun was bright. The task at hand was to move some items from the back of my car into storage at my brother’s house. A task that should only take 20-30 minutes of effort.
Did I tell you I live with MG? Did I tell you heat can exacerbate symptoms? Fatigue can compromise us. And most importantly, we don’t always remember we are sick. It’s only 20-30 minutes — so we do some not very smart things!
After 15 minutes, I could feel the weakness in my arms and legs accelerating. My heart rate was well above 120 bpm. My breathing was labored and I was beginning to feel lightheaded.
This was after only 15 minutes. My problem was, I had another 15 minutes of moving boxes and containers left to go. So I powered through. That was not a good idea. I finished the task and sat down with a cold drink. I attempted to recover, but this was different. I was having a severe flare, an exacerbation.
You might ask why I didn’t just lie down. The reason I didn’t was because now I needed to drive 90 miles.
My life has been turned upside down by refractory MG. The unpredictability of it. The insidiousness of it. I lost my home six months ago, and being sick, finding stable work is very difficult. So I drove 90 miles to stay with my sister and her husband. I was very sick when I got there. But I still looked “good.” I was in bed for 12 hours afterwards.
Making a difference
Being refractory with the unpredictability of MG makes a person assess how they need to move forward. It’s very hard, but it can also be motivating.
It makes me feel the need to make a difference in the MG community. It makes me need to use my background in science and applied technology to improve the quality of life for other patients living with MG. It drives me to be the difference in someone’s life, even if I’m struggling.
I know many others are doing the same thing to effect change, and together, we are all finding ways to help. And hopefully, we can change the world for people living with MG.
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