I’m recovering from a five-day hospital stay for a CSF leak. After two weeks of agony, adrenaline, and vomiting, a neurologist ordered a blind blood patch, and luckily it worked. Luckily, it’s still working. However, the leak, the MRIs, and the dye really pissed off my mast cells. And two doctors refused to give me mast cell medications.
I feel like I’ve been to hell and back, and I need to rest before I process the trauma.
I checked into the emergency room alone, per usual. I am my own best advocate and I hate asking for help. However, I underestimated the sedating power of Diluadid, Ativan, and Benadryl. I remember trying to text a single word to a friend for several minutes before giving up. Another friend suggested I dictate my texts and I thought that was a brilliant idea. Then I promptly forgot that idea.
My Facebook posts quickly devolved from official updates into a stream of consciousness.
“I hope Sancho visits me.”
Sancho is my toy poodle service dog. Instead of asking for someone to get him for me, I simply hoped aloud Sancho would make that choice himself – as if Sancho drives himself to the hospital. Luckily, my friends brought him to the hospital soon after my post. He woke me up at 3 am, when I pulled my IV out in my sleep. So. Much. Blood.
“At least I have corner room now. I’ve been watching humans park add snow all day”
I think this was the point in which my friends realized I probably shouldn’t be alone. On the 7th floor, I could see a nearby ski hill making snow. I watched it for hours, my own personal snow globe. Nobody else seemed to think it was as wonderful as I did.
My friends made sure I had everything I needed, making several trips to my condo. They even let me think I was still being helpful and orchestrating the details via text message.
“Ok but my mekhjnkr will have just to let you in”
Amidst all the cognitive impairment, I managed to purchase an Audible subscription and download several audiobooks. However, I listen for one minute before realizing I could not concentrate on a whole sentence.
On the fourth day, I became really pissed.
“Kidney swelled shit and cutie wouldn’t believe me… almost left crying”
I have a couple names for the doctor that refused to administer mast cell medications when my kidney went into hydronephrosis. Cutie is not one of them. And by “almost left crying,” I really meant threatened to rip out my IV and flee the hospital screaming.
Without a doubt, I would not have survived this hospital stay without my friends. Perhaps the cognitive impairment was the blessing I needed to accept help. My friends reminded me that we all deserve help and we all struggle with autocorrect.
“She’s been through a lot this afternoon. But they finally have things almost under control. Her murder is fantastic.”
I have a lot to process: a leaking brain sack, a shrinking kidney, and a health care system that failed me. But my murder is fantastic. I don’t know what that means, but somehow I am comforted.
During a recent ER visit after lots and lots of drugs and in the middle of a gigantic mast cell storm, I am not exactly sure what all I said to my husband but I clearly remember the shocked look on his face! He does not shock easily and he was deer-in-the-headlights-shocked!
No one will confess that I did anything embarrassing! I know it happened! Thanks for reading.
I am so deeply sorry to read of the hell you have been through. May the healing begin today and you will feel the prayers I am sending out on your behalf.
Thank you ❤️
my pleasure……….