Getting Sick as the Empire Falls
36 things I learned about US Healthcare from spending 36 days in the hospital
I’m coming atcha from a place of holy satisfaction. Today, I have tussled with the beast that is the healthcare system in Los Angeles, California, United States of America, circa January 2025, and I have won! But it is not with ignorant, human hubris that I write these 5,380 words to you. I don’t need to know much to know that next time, I may not be so lucky. For when it comes to structures so unruly, inefficient, and crazy-making as the variety pack of state-run and privatized institutions that create healthcare in the United States, nobody wins for very long, and you might actually die trying.
Thank goodness we’re in a 9 year, where knowledge may not be half the battle, but it’s still power(ful). Knowledge offers agency, a deeper sense of self-trust, and a compass to guide next steps. It’s the light of a lantern in the darkest of woods. And the ruling card of 2025, The Hermit, reminds us that, for better or worse, we cannot stay in the wilderness forever. We must return to tell the tale, and hope that it reaches someone who could use the information to help themselves.
If we’re always just walking each other home, the least we can do is make the trek a little easier. I’m hoping this knowledge accomplishes that mission.
ICYMI:
❤️🩹: Resources & Mutual Aid Requests from Los Angeles
🌀: Welcome to 2025, a Nine Collective Year
💍: Marriage By the Numbers: Planning Your Wedding Using Numerology
📆: DAILY DIGITS: A 2025 Agenda for Magical Makers
🎧: Call Your Coven is back! Listen to January 2025: Shedding Season
Since the late summer of 2024, I’ve been dealing with rolling, and increasingly intensifying, injuries that I figured were due to a flare up of my not-officially-diagnosed, but absolutely debilitating, health issue from a year earlier.
August’s aches and pains started when I sat in the grass for too long at a screening of True Romance at Hollywood Forever Cemetery, and leveled up when I was bent over, putting away clothes, and a sneeze took me by surprise. September’s crunch-n-spasm took me to an urgent care in Sherman Oaks, where the doctor all but outright accused me of trying to scam pills. He gave me a generous two-day supply of muscle relaxers, and told me to see my primary care doctor. I did my due diligence and saw her in October, where she told me I was anemic and probably just pulled a muscle. She ordered an x-ray that would die a slow and painful death between the clinic’s referral department and the office of our state-issued health insurance.
By mid-November, I was bedridden. My low back had gone out again, and now I had such intense, painful muscle spasms that I couldn’t stand or walk. Every day was more excruciating than the last. I got a virtual urgent care appointment that resulted in a more realistic amount of muscle relaxers, and hobbled my way back to my primary to see what she thought. She said it sounded like fibromyalgia.
On December 7, knowing I wasn’t improving and that something was deeply wrong, my wife drove me to the ER at Cedars-Sinai in Los Angeles. An MRI revealed the back spasms and pain were a result of five (5) spinal fractures. More concerning, they were caused by a weakening of my bones due to lesions, which cover my spine, pelvis, ribs and sternum, and are likely the result of a metastatic disease—also known as cancer. I was immediately admitted.
Over the next thirty-six (36) days, I had every scan and blood test known to mankind, and five (5) tissue biopsies, including a full hysterectomy on Christmas Eve. Everyone was on the case: oncology, hem-oncology, gyn-oncology, infectious diseases, rheumatology, endocrinology, and more. One specialist remarked I had the largest doctor team he’d ever seen. However, my body seemed to be like that widely meme’d Frodo moment, “All right, then. Keep your secrets.” My blood work was consistently normal, I was negative for infections, and every biopsy came back either benign, or inconclusive. The only confirmed diagnosis came from my hysterectomy, which produced eight (8) benign fibroids, but also uncovered stage four (4) endometriosis, a mysterious and non-curative disease that will require future treatments.
Finally, on January 13, on the full moon in Cancer, the hospitalization became untenable, and I went home to be reunited with my soul pup, Gus.
While I don’t have definitive answers about what’s causing the spinal lesions, and I could very well still have advanced stage cancer (a theory the hospital doctors never wavered from despite not being able to locate malignant cells in my body), I know that what I need now is to rest in my own space, recover fully from all of the surgeries and procedures I spent my holidays having, and then follow-up with Cedars, while also seeking a second (third, fourth) opinion.
Today though, my holy satisfaction—my divine delight—comes from a day of successful interactions with medical professionals across numerous healthcare offices. I kept my cool, they all kept theirs, and I was able to schedule all but one of my Cedars follow-up appointments! I also helped to solve an authorization issue for my wife, who put her own medical needs on hold to sleep in a chair beside my hospital bed for the entirety of my stay. When it rains, it pours, baby!
So before you read the 36 things I learned about US Healthcare from spending 36 days in the hospital, you must first know that it is a system designed to not provide you with the potentially life-saving care you need.
Even if the person on the other end of the phone is the nicest, most helpful person on the planet, you are both bound to find yourselves tripped up by some bureaucratic rule, inconsistency, or dead-end. Getting “care” is just an infuriating process. And me trying to impress upon you that you must be the most patient of patients is not altruism, I’m sharing a skill for fucking survival! Especially as we venture further into the end of this, and the beginning of whatever comes next.
Healthcare in the United States is a mess, and it’s unlikely to get any better.
36 Things I Learned About US Healthcare from Spending 36 Days in the Hospital
YOU HAVE TO ADVOCATE FOR YOURSELF AND YOU HAVE TO DO IT EVERY MOMENT OF EVERY DAY!
The Learning Curve is STEEEEP — You have to become an expert in medicine, hospital culture and administration, insurance, etc., and you have to become one IMMEDIATELY. No matter how many people walk and talk you through things, you must somehow learn decades of schooling in a single moment, and move forward with a preternatural ability to receive and synthesize complex and horribly distressing information at the drop of a hat. Oh also, no one’s going to explain or walk you through anything, and you will spend most of your time inferring meaning through what’s not said.
What a Hospitalist Is — The hospitalist is essentially your primary care physician at the hospital. They’re the quarterback of your care team, responsible for gathering information from the different specialist teams, delivering or consulting on test results, fielding questions, ordering medications, and more. Sometimes they’re incredibly engaged and a driving force forward, and other times, they clearly have more important things to do, and are just doing the bare minimum of checking in with you daily. (Yes, that last bit is my opinion, but I am speaking from experience!!)
What a Specialist Team Is — A specialist team is fairly self-explanatory, but they’re the experts on a particular branch of medicine. These are your oncologists, neurologists, endocrinologists, rheumatologists, etc. They perform consults and physical exams, order diagnostic testing, work with radiology and pathology—the teams that read your scans and do lab work on your tissue—to consult on test results, nail down diagnoses or next steps, and determine treatment plans. Specialty teams tend to stay on your case until their forte has been ruled out, but even then, some will continue to monitor a patient’s chart for future findings.
What a Supportive Care Team Is — Also known as the Palliative Care Team—which is the name my hospitalist horrifyingly introduced them as on DAY THREE OF MY HOSPITAL VISIT—the Supportive Care Team is a group of social workers and physicians who act in service to your physical and emotional care needs while in the hospital. I’m not sure if every hospital has this team, but I really benefited from having these gentle doctors be there for me when test results came back, order additional medication to have on hand, and otherwise ensure I had advocates on my side and in my corner.
What a Case Management Team Is — During the truly insane flurry of the first week, I also met an internal team of social workers who were helping to manage my case. They help with filling out and filing important paperwork, like Disability Insurance and paid Family Leave. They make sure you know you can buy a pass at the parking office that will save you some money during a longer stay. (The fact that you have to pay for parking at a hospital honestly should be its own item on this list, but oh well, now you know!) They assist with insurance approvals, and connect you with the hospital’s financial department. And when you’re preparing for discharge, they also help to facilitate follow-up appointments and other scheduling needs.
The Members and Schedules of A Nursing Team — The nursing team is made up of the Shift Nurse, the Clinical Partner, and the Charge Nurse. The Shift Nurse is in communication with your doctors, manages the scheduling of your scans and procedures, delivers and administers your medications, changes dressings as needed, and otherwise handles your daily needs. The Clinical Partner takes your routine vital signs, changes the sheets on your bed, refills in-room water jugs, and more. The Charge Nurse is the supervising nurse. In over a month at the hospital, I never met a single one, but I’m fairly certain Stacey exchanged words with one when she tried to force us to change rooms with no warning, at 10:30 PM. The nursing team changes every twelve hours, and works no more than three days, and three shifts, in a row.
Hospital Doctors Rotate Every Week — Doctors on both the hospital staff and specialty teams rotate throughout the hospital every week. This means that by the time I left the hospital, I was on my sixth hospitalist, and no one from any of the specialist teams had been there for the entirety of my stay. In my humble opinion, this leaves a major gap in the continuity of care one receives while hospitalized. It is absolutely emotional labor to have to explain your situation every week to a new group of people, who now hold your life in their ever-changing hands. Plus, it can be dangerous to your safety if the new addition doesn’t know, or isn’t taking into account, what’s already been done. The only two teams that remained with me for the duration were Supportive Care and Case Management. Small lifeboats in a churning, pitch-black sea.
Lack of Communication Between Hospital Teams Means Conflicting Information for the Already Overwhelmed Patient — In addition to the constant shifting of doctors and nurses, another huge frustration of mine was the lack of communication between the teams. Information in the hospital really does change minute-to-minute, but in a perfect world, the teams would discuss plans between themselves before addressing the patient. I would regularly have a discussion with one team, get myself all psyched up for the next step, and then hear from the following team that what the first team wanted isn’t actually possible, safe, or happening. If they’d talked to each other before coming to see me, I would’ve been spared the additional loop-de-loops on the emotional roller-coaster.
Sometimes You Have to Remind Doctors to Read Your Chart — It might sound obvious, but unfortunately I did have to request the addition of the rule that any medical professional coming to talk to me about my care had to read my chart first. It’s chilling that I had to make that demand, but it was better than having to explain all that I’d been through to every single doctor that joined the case. Slash some nurses too, who would come on shift and get curious, only to say goodbye and good luck! a mere twelve hours later.
Photo by insung yoon on Unsplash It’s Very Hard to Sleep at a Hospital — Between the fluorescent lights, the incessant beeping, the middle-of-the-night med deliveries, and the taking of routine vitals, it’s incredibly hard to get deep, uninterrupted sleep at the hospital. Then you factor in early morning visits from specialty teams, who literally wake you up to deliver terrible, life-changing news before “leaving you to rest,” and you may truly never sleep again! Thankfully, there are meds they can give you. I went on melatonin after a particularly sleepless weekend, thanks to my neighbor blasting Mariah Carey’s “Hero” all night long.
How Early is Too Early for a Blood Draw? — The answer? The limit does not exist. Based on my experience, a phlebotomists’s favorite time to come in, stab you with a needle, and suck your blood into various bottles and tubes is between 4-4:30 AM. Why? Who knows. But there they are, and all you can do is cover your eyes, turn on the lights (so they can see where they’re poking you), and brace yourself. Also worth noting is that it’s never too late in the day for them to swing by either. In fact, one day, I had my blood drawn in the morning, afternoon, and again at night. Thankfully, I’m an easy poke! *wink*
Just How Often You’re Going to Have to Talk About Your Poop — I swear on everything, a nurse’s favorite subject is poop. They might refer to it as “number two,” “a bowel movement,” “a BM,” or other alternative phrase, and some even say it in a sing-songy voice: “Did you take a poooooooo-oooop?” But it all still means poop, and they’re all going to ask. Repeatedly. All day, every day, for as long as it takes you to finally fess up and say you took a shit. Even more alarming is all of the reasons why you might not have regular bowel movements while in the hospital. But don’t worry, if that happens to you, they have plenty of options to get things going again! Shout out to Milk of Magnesia!
Just How Many Pills You Can Swallow At One Time — Depending on how many medications you’re on at the hospital, you might find yourself taking a whole bunch of pills at one time. I think at one point, I was up to 7 or 8? And while you can totally take them one-by-one, there is something thrilling about grabbing that tiny pill cup and just taking them all to the gullet. Swishing around a little bit of water, and sending those babies down, down, down to work their magic. Anyway, don’t choke! You’re only in a competition with yourself, and it’s only so you don’t get totally bored and go fully insane.
The Tenacity of the Food and Nutrition Team — The Food and Nutrition team is by far the team that visited my room the most during my stay. They come upwards of NINE TIMES A DAY—to take your orders, deliver each meal, and then come back to pick up your trays. Let me tell you, that’s at least six times too many. Every time someone opened my door, no matter the time of day, there was a high probability it was going to be Food and Nutrition. Of course I’m grateful to them! Sustenance is a huge part of care-taking! But it was constant, always at the worst times, and even when you said you weren’t going to order because you were having food delivered to the hospital, chances are a tray of random goodies would still show up to your room.
The Foul Nature of Most Hospital Food — Now, when I said goodies, I may have misspoke. Hospital food is objectively terrible. When you can’t decide what’s grayer: the chicken, the gravy, or the mixed vegetables on the side—you know you have an issue! I found breakfast, which was just single-serving packages of brand name foods, to be the best meal of the day. Followed by lunch, but only if you got a PB&J (and even then, sometimes you’d order strawberry jelly and they’d bring grape). Never eat the dinner. At the very least, eat from the café downstairs. Otherwise, it’s the gray combo plate!
The Moral and Ethical Dilemma When Starbucks is All That’s Available — I know that it is a trash company, their coffee is always burned, and their pastries now come in the plastic wrap they once pretended wasn’t a part of the production process. But when your whole life gets stripped away, and it’s Christmas, and you’re cleared to drink a morning latte and eat a cranberry bliss bar for breakfast, I’d like to see you hold out. PLEASE FORGIVE ME!
The Joys of American Health Insurance — Spoiler alert: there are none. The only joys are when you somehow manage to get something approved without a fight, or the bill comes and confirms that you really are just on the hook for the co-pay. Not that I would ever assume that to be the case for my lengthy hospitalization, but a sick girl can dream! Anyway, again, this is a system that is designed to make you crazy and keep you from getting the care you need. If you can acknowledge that at the top, you might have a fighting chance, kid.
YOU HAVE TO ADVOCATE FOR YOURSELF AND YOU HAVE TO DO IT EVERY MOMENT OF EVERY DAY!
Photo by Jair Lázaro on Unsplash The Pitfalls of an HMO Plan — An HMO is a type of insurance plan that stands for Health Maintenance Organization. According to Forbes, “HMOs are known for their provider networks and lower costs. They are also restrictive and don’t cover out-of-network care unless it’s an emergency.”1 It’s also the type of plan we had while in the hospital, which is great because our ER co-pay and yearly deductible were both low. However, the insurance was offered through an employer, and we had to change jobs due to the hospitalization. During our shift to Covered California, we quickly learned that the best hospitals in California don’t necessarily accept state-issued HMO plans. We also were aggravated to learn that all post-discharge, follow-up appointments had to be authorized by your primary care provider (PCP), which is a real pain.
What To Do if You Hate Your PCP — If you really hate your PCP, the only thing to do is switch providers and hope the next one is better. But be aware, if you’re on an HMO plan, a PCP will be assigned to you. You can switch to another one, but the change might not take effect until the first day of the following month. Oh, sorry, this is about hating your PCP, not hating your HMO plan. The only other option is to get a PPO insurance plan, and hope to not have to deal with your PCP outside of your yearly physical.
The Benefits of a PPO Plan — A PPO is a type of insurance plan that stands for Preferred Provider Organization. According to Forbes, “PPOs offer more flexibility and allow out-of-network care, but that type of care typically comes with a higher cost.”2 This is the type of insurance plan that we are switching to as of February 1. For us, the additional cost in monthly premiums is worth having the freedom to see specialty doctors without prior approval. We are also going to find a PCP in private practice, whose office won’t be so bogged down. It sucks, but more money really does ensure better care.
There Are Certain Scans and Procedures That Are Outpatient Only — Alright, this is a funky, stupid thing that makes zero sense and is infuriating: there are certain scans, like a Mammogram, PET scan, or DEXA bone density scan, that you can’t get while in the hospital. You can only get them once you leave the hospital. This also applies to certain blood tests. Why? Who the fuck knows. They’re literally all in the same building. It’s purely red tape.
Dealing with Scheduling Outpatient Follow-Ups While in the Hospital — In theory, the case management team will do most of this legwork for you before you leave the hospital. That way, when you’re discharged, you have a plan in place for further care. However, it doesn’t always work out that way. Other complications include what I shared above about HMO plans and PCP referrals. But the biggest takeaway for me is that you’re not likely to see the same doctors outpatient as you did inpatient. Out of the doctors on my hospital team, I’m only following up with one I’ve met before, and I only met him because he was called in to assist on my surgery once the endometriosis was found, and therefore also did some follow-ups with me later that week.
What is the Optimal Length of a Hospital Stay? — Oof. Okay, this really isn’t so much a learning as it is an opinion. I have no way of answering this question with certainty that it’s even something you can measure. Still, I think the optimal length of a hospital stay, besides not needing one at all, is a week or less. Hopefully just a few days. This would mean that a) your medical needs are minimal, or straightforward, b) you will likely just have one or two rotations of doctors (depending on what day in the current shift you arrive), and a handful of nurses, and c) you won’t stay long enough to really peek behind the curtain and experience the major pitfalls of the hospital setting.
What Happens When the Fire Dies? — I sincerely hope that should you ever have to go to the hospital, your ailment is easily diagnosed and treated, and that you never overstay your welcome. At a certain point, all of the support and (almost overwhelming) teams that were there at the beginning start to Peter out. Sometimes, the momentum on your case stalls completely. No one actually wants to be a medical mystery. It’s frustrating and taxing. Should it happen to you, start to think about getting a second opinion. It’s very hard to relight the fire once it goes out, and you deserve attentive, engaged care.
What Happens When the Fires Start… Literally… and Surround the Hospital? — During my last full week in the hospital, the Palisades, Eaton, Hurst, Sunset, Kenneth, and other fires both named and unnamed, broke out and devastated Los Angeles County. Cedars-Sinai is in Beverly Hills, so at one point, we were surrounded by uncontrolled blazes on three out of four sides. I am endlessly grateful to all of the firefighters for their swift, precise work in keeping me, and so many others, safe. I am also grateful to have a home to return to. I am heartbroken for all Angelenos, and also what a fun, new trauma to add on top of all the other trauma…!
Photo by Robina Weermeijer on Unsplash The Question of Do They Have an Evacuation Plan? — I am positive that Cedars, like most hospitals, and especially those in parts of the country most affected by climate change, have evacuation plans. But according to our nurse the second night of the fires, after the Sunset fire started in the Hollywood Hills directly north of the hospital, an evacuation plan had not been talked about yet. This was mildly concerning to me, a patient who is mobile, out of pain, and in relatively stable condition. I can’t imagine what it would be like to not know the plan, but know you need to stay on life-saving machinery.
The Benefits of Having Your Own Evacuation Plan — Like I said before, my mobility made it possible to come up with our own plan to flee the fires! And the only safe direction to move in was south, so we decided to use a friend’s place in Mar Vista as a meeting place to connect with Stacey and Gus, who were in the valley at our house. So that was that, we’d slap on my back brace, pack up the room, take what we could carry, and leave the rest. Thankfully, we didn’t need to employ the plan, but we did get a head start on cleaning up the hospital room we’d fully moved into. Truly, we brought our own lamps!
At Some Point, You Stop Being a Human Being, and Turn Into a Lab Rat — Okay, back to very sad, but very real business. If you stay long enough and are confusing enough to have multiple procedures, chances are good that you will start to lose your humanity at some point. Doctors mean well! They want the answers! But they don’t always remember that you’re a human being, who’s going to have to go through really intense, and likely painful, experiences to help them get those answers. In my case, I actually told my doctors that I was starting to feel like a lab rat. They looked at me with pity and said, “Yeah.”
What To Do When You Wake Up From a Procedure Covered in Your Own Blood — I sincerely hope this doesn’t happen to you, and I almost didn’t include it in this list, but I made the decision to keep it because it illustrates just how many opportunities there are for care to slip through the cracks. My fifth biopsy was of my pelvic bone. They put me to sleep, took bone and bone marrow, and then slapped a bandage on me and called it good. When I came to, I was back in my room, in my own hospital bed, alongside my mom, my wife, and the nurse. However, it didn’t take long for me to realize that between the procedure and my return to the room, no one had thought to look at, or change, my hospital gown. It had completely soaked through with blood, along with the abdominal binder I had to wear post-hysterectomy. Anyway, it was horrifying, even if it wasn’t intentional.
How to Dissociate Without Losing Your Agency — I was one hundred percent tuned in and present for the entirety of my hospital stay, and I am damn proud of myself. That being said, I couldn’t always stay in my body. Sometimes, I had to have a break. Obviously there are pills you could take that would put you on some other plane, or at least get you floating just above it all. But if you want to keep your agency, I suggest dissociating to Friends reruns on Nick at Night, silly, smutty books on the Libby app, within the pages of a child’s coloring book, in the depths of a box of chocolates, or anything else that let’s you escape for just a second. It doesn’t seem like much, but in the hospital, sanity does truly lie in the little comforts.
What Happens When You’re Unable to Get a Diagnosis — First and foremost, you rage and scream and cry and do whatever else you need to do to release some emotional energy around the fact that it’s wholly unfair and terrible to know you are sick, but not know why or what to do about it. You then weigh next steps and options, and decide whether or not you need to continue to be in the hospital. Next, you make sure you at least know who you’re meant to be following up with and how to contact them to make an appointment. You order copies of medical records, scan images, and test results. And then, you just keep swimming.
All of the Ways to Receive Gifts and Care Packages at the Hospital — I know this is a funny place to put this one, but I think we could all use a hug and a treat right about now! The good news is, there are many options for hospital deliveries! If the hospital has a gift shop, chances are they’ll have an online shop where people can pick flowers or gifts to send up to your room via a hospital volunteer. Food delivery places will also drop things off at the hospital entrance, but someone in your party has to go down and fetch them. Most external flower or balloon deliveries, or other kinds of shipped packages can also be received at the hospital. These are also brought up to your room by the lovely volunteer staff, and then housekeeping will take the empty boxes.
At Some Point, You Have to Remind Yourself That Medical Professionals Are Humans Too — I saved this one for last because I think it is the most important takeaway, and also the hardest to fathom. When you want an answer, and you’re dealing with “an expert,” it can be super difficult to remember that this is a person with flaws, blind spots, and things they just don’t know. Doctors make mistakes. They don’t always know what to do next. They don’t always consider your feelings. But I suppose that’s just part of being a human having this confusing, faulty experience. And again, it’s not like that knowledge solves everything or is easy to employ, but it doesn’t make it any less true. We’re all just figuring it out with the tools we have.
YOU HAVE TO ADVOCATE FOR YOURSELF AND YOU HAVE TO DO IT EVERY MOMENT OF EVERY DAY!
To say the last few months have been an ordeal would be an understatement. I would not be writing this today without the unwavering support of my friends, family, and community, and definitely not without my incredible, show-stopping, saint of a wife, who helped me walk, and again, slept in a chair by my hospital bed for all but a few nights. Thank you all, I love you all. Community saves lives.
Anyway! HAPPY HOLIDAYS HAPPY NEW YEAR HAPPY EYE OF THE STORM FOR ME. I am currently being held together by a sick, new back brace, a multitude of pills, and a sheer will to live. If you have good, healing energy to send my way, thank you, I receive it, and I’m sending love and solidarity back your way. (If you have medical advice or experiences to share, I just ask you that you really consider the impacts before reaching out!) Thank you for reading all of this, and for being my pal—whether it be online, irl, or a combination of the two, it all counts in my big, ole heart. ❤️🩹❤️🩹❤️🩹
Until next time, just keep swimming!
xx, bee
Masterson, L. What’s The Difference Between PPO And HMO Health Insurance? 19 December 2024.
See 1.
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
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. ❤️