Are We Healthy Yet?

Dear CCNRFs

This is a belated update to last year’s posts about our odyssey through the US health system in pursuit of a diagnosis and treatment for my daughter Sophie’s grave illness.

It’s said that no news is good news, and this is true for us! I am thrilled to say she has greatly improved in the last few months. After finally being diagnosed with lupus and prescribed the correct treatment, Sophie’s healing has gone very well. Within a couple months she has made great improvement.

And yet, this time has not been free from struggle. Thankfully, she has not been back to the hospital since the end of October, and her treatment is proceeding well. Nonetheless, it’s been a challenging process to heal from the critical state she got to before being correctly diagnosed and treated, and to adjust to living with lupus.

You can read about this odyssey here, here, and here, along with various reflections on our healthcare system. Let me recap the story: in August of 2025, my young adult daughter Sophie became ill, worsening over the course of that month. We followed medical advice and tried to keep her hydrated, but this had no appreciable effect. She spent ten days at Washington Hospital Center (Medstar) and, after innumerable tests involving endless blood draws by the “vampires,” as she called them, who constantly entered her room, usually during meals or attempted sleep, they sent us home with a guess that she suffered from a tick-borne illness and a course of doxycycline.

Once discharged, Medstar refused to continue seeing her because she is on Medicaid (once she turned 26, she became ineligible for our family insurance plan). They helpfully sent us an accounting of what her hospitalization would have cost had she not been on Medicaid—nearly $200,000!

Fortunately, my physician sister Beth connected us with the Maryland University medical system. There, a kind and thorough doctor saw her and, thankfully, took her off the doxycycline, which was making her sick and not helping at all.

In the next several weeks—mid-September to mid-October—she seemed to improve somewhat. Her new PCP told us it takes time to heal from the shock to the system she had had from the viruses that showed up in her tests. He recommended vitamins, so I went to a special vitamin store to get them.

I spent the next few weeks cajoling her to eat and take the vitamins, but despite my best Jewish mother efforts, she didn’t get well and soon began to decline again, to our increasing worry.

Nonetheless, we worked on having a normal life during that time. With much logistical effort, Sophie was able to attend a fundraising event for her grandmother’s nonprofit organization, as well as an improvisation class—though her weakness forced her to sit down through most of it and she had to drop out after one session. She tried to go to work but after a few hours was exhausted and in pain.

A month out from her hospitalization she remained debilitated, dehydrated, and in pain, barely able to eat. To me it did not look like gradual healing; it looked like getting used to being permanently unwell.

Finally, in mid-October we returned to Baltimore to see a rheumatologist, who told us Sophie’s lab results and symptoms indicate she has lupus, systemic lupus erythematosus and that her symptoms confirm this. The rheumatologist reassured us about the good treatment available nowadays, wrote a prescription for us to pick up at a local pharmacy later that day, sent Soph to the lab for follow-up tests, and we went home, expecting to start her, finally, on a gradual but correct road to recovery.

That is not what happened.

Within a few hours, the rheumatologist phoned and ordered us to go immediately to a hospital ER. Sophie’s lab results from that day—which the doctor had read in due course after our appointment--showed alarmingly low blood counts. Lupus is an autoimmune disease where the body’s immune system attacks healthy tissue, including, as in my daughter’s case, the blood cells.

So we drove back up to Baltimore (from where we live next to DC), to the UMD hospital. In Emergency she got fluids and a blood transfusion, and they started her on large doses of medication for a lupus flare, which is what they call it when symptoms of this chronic illness act up.

She spent a week in the Baltimore hospital, with me and our kitty staying at my sister’s when not at the hospital. After proper treatment and careful monitoring, Sophie was discharged.

On October 28 (our anniversary, as it happened) we headed home to begin living with lupus.

Last night Sophie and I joined a neighbor, giving out Halloween candy to trick-or-treaters. We sat outdoors in the chilly evening for a couple of hours, and Sophie had the endurance for it. Yay!

A big contrast with the No Kings! Protest we attended a month and a half ago, just a few days before she ended up in the hospital again. Then, even though we had a chair for her to sit on, she was in pain and lasted less than a half hour.

She’s getting stronger and eating better, but these lupus symptoms seem to have made common cause to fight the treatment every step of the way. She is having a series of rashes, including the iconic butterfly rash on her face, joint pain, swollen lymph nodes, night sweats (apparently associated with anemia, which is part of what she has). One thing after another…

And then there’s the shots. Every day she needs to get a blood-thinner injection. She and I take turns: she injects herself in the stomach one day, and the next I do it in alternating arms.

She has gotten increasingly reluctant to give herself the injection and has balked in the last couple days, so I have done it. I am no nurse, and before this I’d never given anyone a shot. But we gotta do what we gotta do.

It’s interesting that rather than get easier, these shots have gotten harder. In part it’s because there are limited places to stick. It must go into fat, not muscle. The belly and the flabby part under the arm are the only places that work.

Neither she nor I want me to inject her belly, so her arms are starting to take a lot of shots. This blood thinner is not optional, since the disease makes her blood prone to clotting. She already had a pulmonary embolism several years ago—which at the time did not lead the doctors to investigate further, beyond blaming birth control hormones. That was yet another moment where a little more curiosity about her lab results would have been extremely beneficial.

She was slim to begin with. Since her illness has curbed her ability to eat, she’s gotten very thin. I alternate arms every day, but the suitable fatty area is small, and it gets sore and bruised.

We’ve had to figure out the logistics of the injection: readying the needle, alcohol wipe, and gauze; measuring the correct dose on the syringe printed in light blue numbers nearly impossible to see; locating unbruised areas; making the jab quick so it goes in properly and hopefully minimizes pain, but not hard enough to activate the spring that causes the plastic casing to jump out and cover the exposed needle, something you want to happen after the injection. And then there’s figuring out what to do with the needles afterwards…

These details are a glimpse into a largely unrecognized aspect of caregiving: the learning curve, the trials and errors, for untrained family caregivers, as we figure out the routines, procedures, and skills needed to care for our loved ones. Medical and professional home care personnel are taught and get to practice until they are comfortable with the procedures. We family caregivers don’t get that training or repeated tries. We “practice” once a day, which any educator will tell you is too little to master anything requiring precision and dexterity. Moreover, we do it unsupervised, without certainty that we’re doing it right. Written instructions are often confusing and leave out important steps.

Didn’t they teach me how to do it in the hospital? Well, yes, I observed (from the other side of the bed), how the nurse gave the shot, and she later coached me and Sophie each in doing it once. Better than nothing, but once on our own I saw how many details go into this single activity, with trial and error being practiced on the flesh of the person I least want to hurt, and not in a calm learning environment but in the midst of emotional turbulence, distraction, and time crunch. She is brave and willing, but it takes a toll, emotional and otherwise.

It’s not only the shots; it’s also cajoling her to take vitamins she doesn’t like. It’s helping her deal with the cascade of symptoms that lupus put her through after she came out of the hospital: rashes on her face and body, swollen lymph nodes, anemia, skin irritation, joint pain, tiredness, eye irritation, you name it.

Plus managing the extra sensitivity and low threshold of stress. The trigger is most often our kitty, who jumps up onto desks and counters and pushes things off for the pleasure seeing them fall and hearing the crash. She spilled water several times into Sophie’s bed and broke several mugs, including—the worst!—one that Sophie had brought back from Japan.

A most distressing aspect was the loss of her hair. People sometimes go gray overnight after extreme stress, but I had not heard of a person losing their hair altogether, not because of medication or even as a symptom of lupus (though hair loss is one of the many, many symptoms this disease can present), but because of physical stress.

Yet this is what happened. Her hair texture became very strange and prone to terrible tangling. After each washing it clumped up most horribly and took me hours to untangle, strand by strand. In doing so, much hair simply came out in my hand. For a time, I tried to conceal from her how much she was losing, but this soon became impossible, which led, as you might imagine, to a good deal of woe. A doctor friend told me that many people who lose hair through treatment, which is much more common, find this particularly distressing, even though objectively it’s not nearly as serious as other things happening to them.

Fortunately, after losing pretty much her entire head of hair, since she’s been getting better new hair is now growing in—and looking very cute!

Extrapolating from my personal experience is risky, but from what I observed over these last eight months, home education of patients and caregivers in the details of keeping track and administering meds, let alone other procedures to promote and maintain wellness, are not a priority in US healthcare. Most of us must figure out these vital things on our own.

I wonder how much better off patients and caregivers might be if we had more teaching and hand-holding in the transition toward managing a long-term illness at home.

I wrote above about how close we got to a really dire situation, from which, thankfully, quick action, an accurate diagnosis (finally), and a good medical team were able to pull her back.

But what if things had been different? For instance, what if she were Black? In our case, this most likely would not have been a factor, because our rheumatologist is both female and Black; but that is rare, even though women of ethnicities other than White, especially Black women, are more likely to have the disease, and are more likely to die from it. Is that because, medically speaking, it affects them more severely? Or because inbuilt racism keeps them from getting sufficient, competent, timely treatment? I am all but certain it is both.

Sophie, a young white woman, had her pain ignored by doctors for years. She had other symptoms, including joint pain and a pulmonary embolism (blood clot in the lung). The embolism was treated in a timely fashion, but despite some blood tests strongly indicative of underlying autoimmune issues which should have prompted further tests, these didn’t happen.

She had the good fortune, after the Medstar system failed her, to be referred by my physician sister to a better medical system, through which we were connected to an excellent rheumatologist.

What if we had not had this major help in getting to the one type of specialist we needed to actually diagnose her in what turned out to be the nick of time?

What if Sophie were male? It is well known that women’s pain is ignored and dismissed. I learned this lesson at my first gynecology appointment when I was seventeen. Already half-traumatized by his nonchalant physical exam, I sat in front of the gynecologist’s desk as he took a call from another patient, smiling and nodding into the phone. Hanging up, he told me, grinning,“Women! With them, something always hurts!”

Do a minimal internet search and you will see many articles discuss how women’s pain is minimized. And you’ll find plenty of material detailing how much more severe and dismissive the attitudes toward Black and Brown women tend to be.

My caregiving setup has been as good as is possible in this society of nuclear families. I have all the needed supplies, plenty of emotional and material support, sufficient time (out of my work schedule, but I have the advantage of working at home).

I often think about the people--overwhelmingly, female relatives—around the world who deal with daily caregiving challenges, not in a situation of peace and plenty but surrounded by war, hunger, lack of supplies, domestic abuse, living in a refugee tent community…

Or in the aftermath of their spouse and provider being abducted by ICE. In the past few months, as Sophie has improved, I have gone back to participating in the PG Immigrant Rights Collective. Among the families I work with are at least four with severely handicapped children needing a range of critical care, something the mother now must provide on her own, following the shattering detention of the father (women are abducted as well, but in my direct experience so far the ones left to pick up the pieces have all been mothers with young children).

On top of the existing challenge of parenting a sick or handicapped child, the mother must now, suddenly, scramble to meet, on her own, all the family needs for food, shelter, and everything else, in addition to pursuing the kidnapped spouse’s legal case, with all the expenses and worry this entails, on top of having to comfort and reassure her children while feeling little comfort or reassurance herself. And continue to perform the caregiving duties associated with her child’s special needs.

And then there is caring for a loved one with a medical emergency in a country under unilateral coercive measures such the ones imposed by the US military against Venezuela and Cuba. To name just one, which I happened to witness first hand. Margarita, an elderly woman at the rural Cinco Fortalezas commune where I am doing a writing project, broke her hip. Her daughter had to care for her in bed while they waited days for working ambulance to transport her to a hospital. Venezuela has universal healthcare, but out of the way places are hard-hit by US sanctions that limit access to spare parts and supplies. And this was prior to the all-out attack and blockade that began late last summer and culminated in the bombing of Caracas and kidnapping of President Nicolás Maduro and Cilia Flores on January 3, 2026.

It is clear to me that community is key in family-based care. Two different areas come to mind. First, one’s personal community: I am grateful for vital support from my community, neighbors, family, and friends. The caring community an individual gathers around themselves by membership in an organization or place of worship, a friendly neighborhood, helpful family and friends, is well recognized in our culture. However, it is not a given. It depends on the neighborhood one lives in and the network of family and friends one has available. Likewise, it varies according to how many and how close one’s connections are, where one lives, what kind of work one does, and what kind of personality one has. A shy person, a crotchety person, someone who has recently moved to a new location, may find themselves without much of a community to help in times of need.

Like all else in this individualistic society, access to such community support depends on individual circumstances, initiative, and access to resources. Community, though equally needed by all, is not equally available to all.

In collectively oriented societies such community support is built into the social structure. In Cuba, medical care is embedded into neighborhoods and villages. The neighborhood clinic is close at hand, and house-calls are common. In fact, since the Trump oil-blockade has made vehicle travel extremely difficult, house-calls have become even more common.

This is because the system is already in place, able to handle circumstances like the blockade that, while very dire in Cuba, would be much more catastrophic in a system like ours, where we have few mechanisms in place for community-based care. Clearly, we are capable of creating such systems at the grassroots, as we saw in the pandemic, and, in a somewhat different way, are seeing now in the community-based collectives springing up to support families impacted by ICE abductions.

Systems like Cuba’s show how state and local communities can work together to make sure people have equal access to community-based healthcare, which enfolds the local population regardless of their individual circumstances, resources, or personality.