09/20/2026
Long post alert, feel free to skip to the pics 😉
One year ago I had my first myasthenia gravis crisis while I was at my son’s soccer game. I was short of breath, so I asked my husband to bring my inhaler to the game. I was extremely out of breath walking to the parking lot to get it and back. I was confused why I so weak, it was hot and humid and I tried to slouch comfortably in my chair. I did the single count breath test and got 15. I panicked knowing I was supposed to get 25 or higher and anything that low was emergent. I told my dad he had to bring me straight to the ED as my husband had to coach a different kids football game later. I figured they’d say I was fine and send me home.
When we got to the ED, I could barely walk and was given a bed fairly quickly. I told my dad to go back to the soccer games because I was fine and could handle it by myself. He refused to go. The ED doc checked my venous blood oxygen level and it was low. I was huffing and puffing gasping for breath. I was told they were going to intubate me, which relieved me bc I was gassing out. Unfortunately I was wide awake for the first attempt… they gave me the paralytic but the sedation hadn’t kicked in. I tried desperately to show that I was awake but wasn’t able to move. Fortunately, I fell asleep for the next two tries as it had taken three tries to get it in (per my dad who watched from the hallway).
I was in and out of it for the next few days, but extubated because they couldn’t sedate me. That day my blood pressure tanked. I was maxed out on a norepinephrine infusion with still dangerously low blood pressure, so they also started vasopressin. I was going septic, and unfortunately I had been an ICU nurse in the past and knew what was happening. That was the first time I thought, this was it for me, and that I can’t will my body to work when it doesn’t want to. I was at peace with it, heaven sounded amazing. But then I felt my husband holding my hand and remembered he and my kids needed me. As I’ve said before, I prayed fiercely to be healed from whatever was taking my body down so that my kids could have their mother. They then discovered the ventilator acquired pneumonia, gave me IV antibiotics and I turned the corner.
I discovered this week I may be dealing with some PTSD. As the weather changed, and I started
getting into the swing of fall activities, I felt anxious. Sometimes my chest felt tight. I’m having nightmares of not being able to breathe and getting rushed to the ICU. I’m tearing up at the kids soccer field for no reason.
I always have in the back of my mind that I could crash any day and end up in the hospital. I double check if there’s anything people need to be aware of in case I suddenly crash again. For example, I have my friend on standby when I’m incubating eggs because she knows what days each set is on and what is needed when, just in case… I’ve spent more than a total month in the hospital this year, and I don’t like it that it feels like my second house and wondering when I’ll be visiting again.
So when I went to my neurologist this week, I told her I think I need to see a counselor that specializes in this area. She agreed and said she’s not surprised at all I’m dealing with these emotions and will help find the right fit.
That being said, I’d appreciate prayers for healing as I work through these emotions, memories, and physical responses. I think writing it down helps me work through it as well.
I was a little relieved soccer was rescheduled today due to weather, and I spent the day with my kids at
home. I even got some chicken therapy in, including the glamor shots of the new chicks. I have to say today was 1000x better than last year, and God is good all the time! ☺️
