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
Category: Husband
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
Every Breath You Take
"Every breath you take just proves how blessed you really are." - John Landry "This is Rachel Doboga's ventilator just after starting the nebulizer, and her oxygen is dropping to 95, now 93," Evan says, holding his phone up to film my ventilator readings. He stops filming and turns off the nebulizer. "My head is … Continue reading Every Breath You Take
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!
Eight Years In…
Photo by Hakan Erenler on Pexels.com Eight years ago on June 8th, I was diagnosed with ALS. At diagnosis, I was given 2 - 5 years to live. We all are. I was just 28 years old. After my diagnosis, I immediately said goodbye because that's what I was told to do. I was told … Continue reading Eight Years In…
Tag! You’re It!
By Rachel Doboga Evan started doing this thing a few years ago. I call it "love tag." If he doesn't kiss me when he leaves the room, normally if he's in a big rush, he gives my upper arm a quick rub, says he loves me, and hurries off to answer a doctor's phone call, … Continue reading Tag! You’re It!
The Sun’ll Come Out April 19th
3 I haven't written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably … Continue reading The Sun’ll Come Out April 19th
Gross True Love
3 2 3 2 At my most recent clinic, the nurse pulled out my mic-key - the feeding tube that allows access to my stomach - so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered … Continue reading Gross True Love
The Art of Car Crying
3 3 3 3 2 This one goes out to all the people who can't cry at home. Whether you are trying to be brave for a loved one or just don't have the space or privacy to cry at home, I hope this gives you some relief. Step 1: Park your car somewhere safe, … Continue reading The Art of Car Crying
How I Live Now: Life With ALS 