My husband is being discharged today after eight weeks in the hospital for a mystery illness, and he did a painting while hospitalized of a goose nurse running into the room honking “VITALS” at 4am. We both appreciate this newsletter very much
Esmé, this is so funny and absolutely so true alskdjal. I know they're doing important work, but also quit honking so early, people are trying to rest! Eight weeks is MAJOR, and the mystery aspect is so enraging and demoralizing. I'm thrilled to hear he's being discharged, and sending both of you a ton of love, comfort, healing and solidarity. I hope you get answers and clarity as soon as possible! xx
Preach!! I spent a week on the Neuro ward of NY Columbia-Presbyterian hospital getting IV antivirals for meningitis. I finally got sent home with a PIIC line for continued infusions every 8 hours that I had to administer myself…and it was still better than listening to my roommate blasting the TV at top volume and being woken up every time I had actually fallen asleep for a poke or a consult, etc.😝 At the same time, I’m so grateful for the medical team! It’s a teaching hospital, and I was an interesting case, so each time the doctors rounded, there would be more of them. By the end of it, I was telling the female interns to get in front and not let the tall dudes block their view. Turns out, a brain infection can remove your inner filter! 🤣 Thank you for sharing this piece - and I love your pupper!! Mine has been super-important in keeping me hanging in there. ❤️
Oh my goodness, Christina, what an ordeal!!!! I'm so sorry for all that you've, no doubt, been through, and brain infection or not, it's so important to get those ladies to the front!! 😂😂 Yes, the balance of, "I'm so grateful for my medical team," and "EVERYBODY LEAVE ME ALONE!" is a fine and delicate one... and I totally agree -- I'm much happier at home with my pill planner and my many alarms for meds, and of course, my dog! i really hope that you're snuggling yours and that you have recovered and are healing! Thank you for sharing your experience with me! xx
Thank you so much for this. You've been through so so much. Ten years ago, I spent about 3 weeks in the hospital (broken up into three pieces) over a span of 10 weeks and it was tough and I learned a whole lot. This list is so accurate and I felt this deep in my soul! I was nodding along!
You're an amazing person, Bee. I'm so grateful for you. I'm so sorry it's been so hard. Love you. xo
Karen! I’m so grateful for you! 😭🫂 I know you understand so much of this, and a slew of other things that no one should ever have to learn or know. You are so special. Sending love and peace your way, always! xx
Reading this as a chronically ill person whose had shorter but still frustrating hospital stays silently cheering at each point. So important. So much good information that many of us obtain when we become a part of the club of people who need to know this shit against our wills💜
ALYSSA ❤️🩹 I know you know, and you deal with so much in your day-to-day—it must add up to hospital stay-sized trauma at this point 🫠 It really is against our wills. Sending you love and solidarity, friend! xx
In addition to all of the other things you were doing during those 36 days, you were also fighting dragons. Your resilience is astounding. I truly hope you find satisfactory answers & genuinely healing care soon 🩷
This was a great read, as someone who has been both a patient and a nurse. I wish the medical teams would talk to each other more often too! But it is so frustrating, and then every system and hospital is slightly different so if you’re used to things one way when you go somewhere else it can be a completely new experience. Im sending you all the healing vibes and smooth sailing with your future follow ups!
Hi Kristi!! Thank you so much for this response and for all the smooth, healing vibes! And thank you for all the care you’ve no doubt shown countless patients over the years 💓 The point about the discrepancies between hospital systems, meaning both provider and patient must learn new kinks and quirks every time they switch locations, is so keen!! Another missed opportunity for continuity of care, or work experience, which can be so important to feelings of safety & security. Much love to you! xx
Having to spend a long time in the hospital is so difficult. Sorry you had to endure all that. When my baby was 2 months old she was in the hospital for 3 weeks and it was horrifying. The fortunate thing about your experience is that Cedars is one of the best hospitals in LA and probably the country. So despite the errors, delays and frustrations you were being cared for by the best.
oh liliana, i'm so sorry to hear about your own hospital experience! & to have it happening to your baby -- sending so much love & healing to you all. it can take so long to process & move forward from. yes, we are still fans of cedars & there for follow-up/continued care. definitely grateful to be where i am! thank you for reading & for reaching out! xx
I’m so glad this popped up in my feed. I got diagnosed with (another) chronic illness 3 days before the inauguration and it feels like a sick joke. I work in healthcare but have learned SO much being a patient
ooof becky! what a confluence of events. it’s truly unimaginable to weather personal & collective chaos. sending you SO much love, healing & solidarity! xx
Two months... Chris, you're a rock-star champion! I am bowing down (as much as I can with a severely fractured back lolol). I know the poop stuff is part of the job, but I got so petulant about it. And YES, always when it's the most embarrassing, for sure. The sing-song nurse came in while we were eating dinner, and said, "Oh.. I see you're eating." My mother-in-law said, "Did you want to talk about poop?" and she said, "Yeah..." There was nothing to report, so we just got it over with hahahah. SENDING YOU LOVE, HEALING & SOLIDARITY! I hope being home is restorative! xx
Thank you for this. It’s a readable, realistic, and HELPFUL look at what life is like in the hospital. As a fellow chronically ill person, I’m in awe of your dedication to documenting your experience for the benefit of others. 🙏❤️
Thank you, Kristin! I so appreciate you and this affirmation. Phew, then you know that we're not afforded the energy to always send missives from the trenches, but this one felt ripe and important to send out while the fuel was there! Much love to you! xx
My husband is being discharged today after eight weeks in the hospital for a mystery illness, and he did a painting while hospitalized of a goose nurse running into the room honking “VITALS” at 4am. We both appreciate this newsletter very much
Esmé, this is so funny and absolutely so true alskdjal. I know they're doing important work, but also quit honking so early, people are trying to rest! Eight weeks is MAJOR, and the mystery aspect is so enraging and demoralizing. I'm thrilled to hear he's being discharged, and sending both of you a ton of love, comfort, healing and solidarity. I hope you get answers and clarity as soon as possible! xx
Preach!! I spent a week on the Neuro ward of NY Columbia-Presbyterian hospital getting IV antivirals for meningitis. I finally got sent home with a PIIC line for continued infusions every 8 hours that I had to administer myself…and it was still better than listening to my roommate blasting the TV at top volume and being woken up every time I had actually fallen asleep for a poke or a consult, etc.😝 At the same time, I’m so grateful for the medical team! It’s a teaching hospital, and I was an interesting case, so each time the doctors rounded, there would be more of them. By the end of it, I was telling the female interns to get in front and not let the tall dudes block their view. Turns out, a brain infection can remove your inner filter! 🤣 Thank you for sharing this piece - and I love your pupper!! Mine has been super-important in keeping me hanging in there. ❤️
Oh my goodness, Christina, what an ordeal!!!! I'm so sorry for all that you've, no doubt, been through, and brain infection or not, it's so important to get those ladies to the front!! 😂😂 Yes, the balance of, "I'm so grateful for my medical team," and "EVERYBODY LEAVE ME ALONE!" is a fine and delicate one... and I totally agree -- I'm much happier at home with my pill planner and my many alarms for meds, and of course, my dog! i really hope that you're snuggling yours and that you have recovered and are healing! Thank you for sharing your experience with me! xx
Thank you so much for this. You've been through so so much. Ten years ago, I spent about 3 weeks in the hospital (broken up into three pieces) over a span of 10 weeks and it was tough and I learned a whole lot. This list is so accurate and I felt this deep in my soul! I was nodding along!
You're an amazing person, Bee. I'm so grateful for you. I'm so sorry it's been so hard. Love you. xo
Karen! I’m so grateful for you! 😭🫂 I know you understand so much of this, and a slew of other things that no one should ever have to learn or know. You are so special. Sending love and peace your way, always! xx
Reading this as a chronically ill person whose had shorter but still frustrating hospital stays silently cheering at each point. So important. So much good information that many of us obtain when we become a part of the club of people who need to know this shit against our wills💜
ALYSSA ❤️🩹 I know you know, and you deal with so much in your day-to-day—it must add up to hospital stay-sized trauma at this point 🫠 It really is against our wills. Sending you love and solidarity, friend! xx
In addition to all of the other things you were doing during those 36 days, you were also fighting dragons. Your resilience is astounding. I truly hope you find satisfactory answers & genuinely healing care soon 🩷
Sarah, this is so kind, thank you! I know I didn’t waste my time watching all of that Game of Thrones lol 🐉 I appreciate you!! xx
This was a great read, as someone who has been both a patient and a nurse. I wish the medical teams would talk to each other more often too! But it is so frustrating, and then every system and hospital is slightly different so if you’re used to things one way when you go somewhere else it can be a completely new experience. Im sending you all the healing vibes and smooth sailing with your future follow ups!
Hi Kristi!! Thank you so much for this response and for all the smooth, healing vibes! And thank you for all the care you’ve no doubt shown countless patients over the years 💓 The point about the discrepancies between hospital systems, meaning both provider and patient must learn new kinks and quirks every time they switch locations, is so keen!! Another missed opportunity for continuity of care, or work experience, which can be so important to feelings of safety & security. Much love to you! xx
Ive never clicked on reading an article faster because so much of what I've been thinking about is being sick during this fascist time
kate!! thank you for reading. i hate that any of this resonates & i fear it’s only going to get weirder & messier from here 🫠😅
Having to spend a long time in the hospital is so difficult. Sorry you had to endure all that. When my baby was 2 months old she was in the hospital for 3 weeks and it was horrifying. The fortunate thing about your experience is that Cedars is one of the best hospitals in LA and probably the country. So despite the errors, delays and frustrations you were being cared for by the best.
oh liliana, i'm so sorry to hear about your own hospital experience! & to have it happening to your baby -- sending so much love & healing to you all. it can take so long to process & move forward from. yes, we are still fans of cedars & there for follow-up/continued care. definitely grateful to be where i am! thank you for reading & for reaching out! xx
So sorry to hear of your ordeal. Sending love and well wishes. Your writing has been an inspiration to me and so many others.
thank you, frances 💓 this is so so kind 🫂💓
I’m so glad this popped up in my feed. I got diagnosed with (another) chronic illness 3 days before the inauguration and it feels like a sick joke. I work in healthcare but have learned SO much being a patient
ooof becky! what a confluence of events. it’s truly unimaginable to weather personal & collective chaos. sending you SO much love, healing & solidarity! xx
Wrapping up a two month hospital stay and I have had SO MANY poop convos, almost always while on speakerphone with friends and/or family 💩💩💩
Two months... Chris, you're a rock-star champion! I am bowing down (as much as I can with a severely fractured back lolol). I know the poop stuff is part of the job, but I got so petulant about it. And YES, always when it's the most embarrassing, for sure. The sing-song nurse came in while we were eating dinner, and said, "Oh.. I see you're eating." My mother-in-law said, "Did you want to talk about poop?" and she said, "Yeah..." There was nothing to report, so we just got it over with hahahah. SENDING YOU LOVE, HEALING & SOLIDARITY! I hope being home is restorative! xx
Thank you for this. It’s a readable, realistic, and HELPFUL look at what life is like in the hospital. As a fellow chronically ill person, I’m in awe of your dedication to documenting your experience for the benefit of others. 🙏❤️
Thank you, Kristin! I so appreciate you and this affirmation. Phew, then you know that we're not afforded the energy to always send missives from the trenches, but this one felt ripe and important to send out while the fuel was there! Much love to you! xx
Sending huge love and healing energy to you Bee. You are amazing 🌹🌹🌹
Thank you, RG 💓💓💓 Big love back to you! xx