A Very Maladies Christmas
How I Live Now: Life With ALS
by howilivewithals
4d ago
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 and I lost consciousness. I’m lucky Evan knows how to handle all this because the hospitals are way over capacity here. Emergency rooms are built for 125 people and they are treating 500 people. They are treating people in the hallway because of COVID, the flu, and RSV, so Evan has been working ..read more
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Pneumonia and Gratitude
How I Live Now: Life With ALS
by howilivewithals
1M ago
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 all. I spent last night in the emergency room and got bumped into the IMCU around dawn. I have a serious infection in my gut. I vomited 11 times in 6 hours and was aspirating so drastic measures had to be taken. I had to have a suction tube threaded through my nose down to my stomach! Let me tell yo ..read more
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Maladies Part 1 / 2 : All the Pills in the World
How I Live Now: Life With ALS
by howilivewithals
2M ago
By Rachel Doboga “No pills for what I feel. This is crazy!” – Neko Case, “I wish I was the moon tonight” I have medicines to protect me from anxiety, depression, even nightmares, but there’s no medicine for sadness and fear. I could have really used a pill for those emotions after my diagnosis and over the years of my battle with ALS. I especially could have used them in September. The entire month was hell. As I always say, when you haven’t heard from me in a while, something is wrong. Well, in this case, nearly everything is very, very wrong. In early September, a tumor the size of a golf ba ..read more
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Lessons in Gratitude
How I Live Now: Life With ALS
by howilivewithals
2M ago
By Rachel Doboga The last few months have been incredibly difficult. As I always say, when you haven’t heard from me in a while, something is wrong. In September, I suffered a major loss, and my mental and physical health spiraled out of control as a result. I’m still recovering. It will definitely be a long grieving process. I have been so sad and sick that I almost didn’t write a Thanksgiving post. Then a friend shared a poem she wrote that inspired me to be grateful in new ways. I hope it inspires you too. Happy Thanksgiving. “Goodness of His Soul” I pray thank You. Thank You when I wake. T ..read more
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Chasing Mr. Sandman
How I Live Now: Life With ALS
by howilivewithals
6M ago
By Rachel Doboga “Leave my door open just a crack (please take me away from here), cause I feel like such an insomniac. Why do I tire of counting sheep when I’m far too tired to fall asleep?” – Owl City, “Fireflies” Sleep has been a massive problem for me almost my entire life. My sleep problems started around the age of 9, which is when I lost my faith. If you have had a chance to read my blog over the last month or so, you understand the story of my struggles with doubt. The other main event of that era was the murder of a child named JonBenét Ramsey. She was even younger than me, and it had ..read more
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A History of Doubt Part 3/3: Letting Death Take Care of Itself
How I Live Now: Life With ALS
by howilivewithals
7M ago
By Rachel Doboga When discussing my fear of death with my beloved and brilliant therapist, he pointed out that I am often so focused on my fears and anxieties that I miss out on the present, on enjoying my time with Evan and my dogs because I am so worried about the future, on the joy of corresponding with loved ones because I am nervous that I am taking too long to respond to their letters, and so much more. My anxiety hops around from topic to topic so I am always consumed by it. Now, I’m preoccupied with death and the afterlife. He advised me to focus on the now, and to “let death take care ..read more
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A History of Doubt Part 2 / 3: Rage Against the Dying of the Light
How I Live Now: Life With ALS
by howilivewithals
7M ago
“Do not go gentle into that good night. Rage, rage against the dying of the light!” – Dylan Thomas If you read my previous piece, “A History of Doubt Part 1: Secrets,” you know I have been struggling with my faith since the age of nine. I actually had a breakdown in middle school over my lack of belief in the afterlife. I started crying by my friend’s locker, and with a minute to go before the bell rang, I asked her, “What do you think happens after death?” With a shrug, she said, “I’ve never really thought about it.” The bell rang, and she headed off to class, leaving me in tears. While I wis ..read more
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A History of Doubt Part 1/3: Secrets
How I Live Now: Life With ALS
by howilivewithals
8M ago
“I believe that prayer makes a huge difference. If not because of a higher power, because prayer is good for the soul. It is meditation, gratitude, poetry and hope all in one.” – Anonymous My father set an excellent example of faith. He never doubted, and he told fun stories about growing up in Catholic school. However, he couldn’t save me from the world outside our church and family. I, like my father, had perfect faith, until I was nine. I remember the exact moment my faith first wavered. I was reading the Ann Landers advice column in the local newspaper, which was convenient because it was ..read more
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The House of Small Smiles
How I Live Now: Life With ALS
by howilivewithals
9M ago
The small smiles started a few years ago when I was on the commode. I can’t be alone even there because I am totally immobile and limp, so even in the specialized commode chair, I flop right over. Plus, I am completely nonverbal, so I can’t call for help if necessary. Add to all that I need someone to clean me, and I clearly require a “bathroom partner.” Evan is looking at me with a furrowed brow and I know the thought running on loop through his mind because it always, always runs through mine – how did we get here? I know he also worries about my mental state in these situations since I can ..read more
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My Top Three Complaints Against my Mother-in-law
How I Live Now: Life With ALS
by howilivewithals
9M ago
1. First of all, my mother-in-law is way too dependable. Every single time I am hospitalized, she immediately rushes over to our house and adopts our dogs, rescuing them from where my husband locked them in his office so they wouldn’t interfere with the team of EMTs who load me into the ambulance. She brings them home with her and takes care of them for as long as I’m in the hospital because Evan can’t leave me (he is the only one who knows how to align my communication device). 2. Probably the most annoying thing about my mother-in-law is how hardworking she is. In addition to rescuing our do ..read more
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