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…
The Financial Cost of ALS
by Rachel Doboga My mother taught me it's not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it's ALS Awareness Month I want to make clear the monetary cost of the monster inside me. ALS is often called "the bankruptcy disease," and with good reason. The … Continue reading The Financial Cost of ALS
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!
Major News for Readers!
Dear Readers, I have exciting news! Now that I have Internet on my Tobii again for the first time in many years, I'm better able to work on my blog. You may have noticed pictures, stylized text, hyperlinks, and more sophisticated auto share on Twitter and Facebook. If these changes haven't caught your eye, no … Continue reading Major News for Readers!
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!
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!
5 Weird Things I Miss From Life Before ALS
Putting on blush - I am very pale, but oddly enough I have always gotten compliments on my skin. Evan says that's because my skin is "porcelain." Whatever the case, I used to put on very light pink blush. My mother taught me well - used it only on my cheekbones and blend, blend, blend! … Continue reading 5 Weird Things I Miss From Life Before ALS
ALS: The Ultimate Relationship Test
By Rachel Doboga "We used to laugh under the covers, maybe not so often now..." - Dave Matthews Band "Alright, I chose Italy. Your turn. Where do you want to go?" Evan asked. "Guess!" I tease. "There are so many places on our Bucket List. Give me a hint." "It starts with I..." "Ireland?" "Not … Continue reading ALS: The Ultimate Relationship Test
A Very Maladies Christmas
By Rachel Doboga I wish I had been well enough for a post on Christmas and New Years, but that wasn't the case. I'm in rough shape. Another lung infection on top of severe muscle spasms on Christmas eve kept us busy through the holidays. Fortunately, I don't remember Christmas eve because my BP dropped … Continue reading A Very Maladies Christmas
Pneumonia and Gratitude
by Rachel Doboga I decided that the most accurate way to share my hospital story is to share my journal, so I am making myself vulnerable by sharing it with the world. I have only cut out one health detail and added explanatory information where needed. Sunday, October 16th, 2022 I'm not Ok. Not at … Continue reading Pneumonia and Gratitude
How I Live Now: Life With ALS 