My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn't benefit us. It was very hard to get that news. They say I'm in the … Continue reading My Battle Against Bitterness
Tag: Joy
On My Husband’s 37th Birthday
"Nothing prepared me for the privilege of being yours." - Sleeping at Last, "Turning Page"2 What you have to understand about the way I love Evan is that I am desperate for him. I can't shut up about him, and I don't want to. People say that the sign of a strong relationship is that … Continue reading On My Husband’s 37th Birthday
My California Kitchen
Photo by Ella Olsson on Pexels.com This piece is about the last summer I could eat before losing the ability to chew and going on a feeding tube. Summer in Amber We held that whole summerIn our strawberry sticky hands,Trapped it in our tiny kitchenWhere sunbeams tangled with our legsAround too much furniture,Each piece an … Continue reading My California Kitchen
The 4th of July – ALS Style!
This is a photo I took on our cross-country road trip just before we crossed the Mississippi River. Ever since we adopted dogs, I haven't been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with … Continue reading The 4th of July – ALS Style!
Rejoice, for Yesterday a Miracle Happened!
Photo by Pixabay on Pexels.com When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down. "What happened? What's going on, honey?" I could hear the mounting panic … Continue reading Rejoice, for Yesterday a Miracle Happened!
I don’t want to marry Edgar Allan Poe!
By Rachel Doboga Photo by Tyler Quiring on Unsplash Alright, here's the scoop. In early March, we knew one bacteria had colonized my lungs, meaning it will never go away. We just have to manage it with hour-long nebulizer / breathing treatment sessions in the morning and evening, and I have to do regular tests. … Continue reading I don’t want to marry Edgar Allan Poe!
The man I kiss at midnight
2 What you have to understand about the way I love Evan is this: I am desperate for him. I can't shut up about him, and I don't want to. I have heard people say that the sign of a strong relationship is that there is no sign of it on social media because the … Continue reading The man I kiss at midnight
Loud Mouth
I have a big mouth. I wasn't always this way. Somewhere along the line, though, I learned to talk back, something I'm especially good at when sticking up for loved ones. Even though I'm in a wheelchair and my voice is fading, I just had to say something when a man catcalled my sister Laura … Continue reading Loud Mouth
Someone to Watch Over Me
Our dog Malka has always been a mama's girl, but my illness has made her much more attentive. Lately, she can even preempt when and where I am about to roll, and if I hit the "help button" on my power chair, she sprints to my side. I was about to accept her new ESP … Continue reading Someone to Watch Over Me
The Kingdom of Childhood
For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking … Continue reading The Kingdom of Childhood
How I Live Now: Life With ALS 