The Lows and Highs

This morning I wanted to scream into the void, a yell so loud that my head could explode. I wanted to cry and scream, for no reason other than a general sense of helplessness. I’m taking disability to a whole new level when I can’t even make it to the bathroom. The lows.

I managed to pull myself together to get to my infusion. I asked the oncologist to look into the new MG infusion therapy I want to begin, to ensure there won’t be any complications…and as it turns out, there might be. Because why would someone with MG also have breast cancer and need monoclonal antibody treatments at the same time? Sure, why doesn’t that exist? Anyone? Oh, just me? Yes. Apparently. So what does that mean? It means that the medicine that could give me immediate relief of MG symptoms would interfere with my cancer treatment so it has to wait until I finish…in August. So what’s a whole summer with no relief and an eye patch? Never saw someone swimming in a pool or at the beach or trying to ride a bike with an eye patch? Yeah, me neither. The lows.

While I was at my infusion, a friend came to see me! How lucky am I that she came all the way back from Hong Kong via San Francisco and made time in her journey to visit with me! A fresh walk, a nice lunch, and some bubble tea made for a perfect date! Thank you for thinking of me and making me feel so special, I’ll never forget your kindness! I’m beyond touched! The highs.

As I recovered on my sofa, trying not to let the heat melt me to a puddle, I built up the strength to go upstairs and turn on the air conditioner. I didn’t want to do it, I figured what’s one warm night. But then I thought if I don’t get good sleep, my body will rebel and there will be no hope of me being kind to my family, so I gave in. And Matt said me getting good sleep is worth the cost. That’s when I lost it and cried. I cried like a blubbering baby because I’m so vulnerable right now and I feel like such a burden. To feel his genuine love for me makes me feel held tightly and so deeply grateful. I love that man. The highs.

Some days are mostly all good, some are the opposite of good. But most days are a combination of lows and highs that ride me through a rollercoaster of emotions. I try to hold on to those highs, to help me coast through the lows that want to drown me.