Nina’s Low-Residue Crohn’s-Friendly Cream of Potato Soup

It only looks like split pea. Chlorophyl from the fresh herbs adds green color to the potato base. When you’re stuck on a low-residue diet, you deal with it.

This recipe has it all: Prebiotics (onions)! Probiotics (miso)! Phytonutrients (parsley, dill, carrots, celery)! Low fiber (because the veggies are juiced not cooked)! Potatoes (peeled)! Flavor (some, we’ll take what we can get at this point)! Plus, it’s vegan.

Low-residue diets, of which my low-fiber diet is but one, help some (but not all) IBD patients manage symptoms. If a Crohn’s patient really wants vegetables, we are advised to fully cook and then puree them. But I now have a JUICER which can take the insoluble fiber out without cooking.

Instead sautéeing the traditional mirepoix, this recipe starts with only onions (which supply a tolerably small amount of fiber, including the prebiotic inulin) and a bit of garlic; the celery and carrots get juiced, along with parsley and dill, and added last.

6 to 8 medium russet potatoes
2 medium onions
1 tsp crushed garlic (optional)
1 T olive oil
4 celery stalks
2 to 4 carrots
fresh parsley (half a bunch? depends on size of bunch)
dill (ditto)
3 or more vegetable bouillon cubes, or 4 teaspoons homemade veggie bouillon mix*
1 to 2 T fresh miso
1/4 cup hot water

  1. Peel potatoes. Cut into large chunks and place in a bowl with cold water to cover.
  2. Wash and prep parsley, dill, celery and carrots for juicer.
  3. Peel and chop onions. Place olive oil in large saucepan or stockpot and add onions and garlic. Sautee on medium-low heat until onions are translucent or staring to turn golden. Add potatoes with their water and turn heat to high. Add bouillon and bring to boil. Reduce heat and simmer, covered.
  4. While soup is simmering, juice the remaining vegetables.
  5. When potatoes are very tender, remove soup from heat and immediately puree throughly with immersion blender.
  6. Put miso in a small bowl and add hot water; mix to make a thin paste, then stir into pureed soup.
  7. Stir in some or all of the vegetable juice. Add salt or additional bouillon to taste, and serve.

*Homemade Veggie Bouillon mix:
1 part finely ground/pulverized nutritional yeast*
1 part fine table salt
1 part veggie seasoning such as Trader Joe’s 21 Seasoning Salute, Mrs Dash, or equivalent
Mix ingredients and store in a jar.

*Pulverized Nutritional Yeast:
Place nutritional yeast flakes in a clean coffee grinder and pulverize. Store in a jar.


Medical Impostor Syndrome

Maybe I should start concealing my hair loss with a jaunty hat!

When I was a child I wanted to be sick, because when I was sick I got to stay home from school. Sometimes I was effortlessly sick and got to stay in the oddly quiet house with its peculiar mid-day creaks and sounds and winter light through the windows and extremely lame daytime TV. But at least once I sat near the heat register before school, then asked my Mom to feel my forehead, and with grave worry she said I should stay home. SCORE! But I suffered a vague sense of being ill at ease – my “dis-ease” not physical, but guilt. I hadn’t earned my reprieve from school by being really sick.

One time I got stung by a bee at recess. I don’t think my grade school had a real nurse back then, so when students got owies we went to “the office” where a grumpy secretary would give us a band-aid. I was in a lot of pain, it hurt like hell, and I cried and cried, not just from the pain but from the terror of the pain. “It doesn’t hurt that much!” said the secretary. But it did. 

A few years later, in Junior High, I was beset by horrendous menstrual cramps. I also developed painful abdominal cramps and diarrhea even when I wasn’t menstruating. I drank barium and underwent medical scans but no specific cause was found, so I was diagnosed with the vague “irritable bowel syndrome,” with no treatment and no sympathy (in contrast to my brother, who had already been through several surgeries for what was later diagnosed as Crohn’s). Doubled over in pain at school, I would go to the office where the grumpy nurse would roll her eyes. “You just have to live with it!” she would snap, as I begged to go home. “Period pain” plagued the rest of my life; I would spend 3 days a month in bed, in agony, until at age 50 I got a hysterectomy and sweet, permanent relief. I was finally permitted a hysterectomy because doctors finally discovered an orange-sized fibroid in my cervix; decades of mere pain weren’t enough to merit any treatment.

Now I have late-onset Crohn’s disease, presumably triggered by my extended bout with COVID this Spring. (Many autoimmune disorders are linked with COVID; I call it COVID-Reactive Autoimmune Pathology, or CRAP.) I got myself referred to the GI department not because of pain, but because months of bad poops had me concerned. One colonoscopy later and bam, I have an incurable progressive RECOGNIZED autoimmune disease that even qualifies as a disability. I’m prescribed a $150,000-a-year designer treatment which my insurance actually covers, and everyone feels sorry for me. I soak up pity like a thirsty sponge.

Just as I’ve seen no correlation between quality of artwork and recognition/money, there seems to be no correlation between pain and external compassion. Some of the worst pain in my life, no one gave a shit about. But Crohn’s? Everyone validates it, and assumes I’m in more physical pain than I am. Yes I am in pain sometimes, if I stray from my ridiculously narrow diet of fresh juice and “safe foods” (Rice Chex, rice cakes, white rice, peeled potatoes, lactose-free dairy, eggs, and fish). But mostly I’m fine. Friends express sympathy and support, but do I deserve it? Sometimes sharing my diagnosis feels like putting my head near the heat register of my childhood home.

On the other hand, I can’t eat real food any more, and when things go wrong they go very, very, crap-in-my-pants wrong. I’m losing my hair and have some dreadful co-morbid skin conditions. And I have these really cool pictures of the inside of my colon (TRIGGER WARNING!):

Continue reading “Medical Impostor Syndrome”


Professional Patient

But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

Cannabis Refugee

After writing yesterday about Crohnomics, a friend pointed me to the article excerpted above. Its author maintained the old radical feminist Femonade blog until she got more interested in writing about being a “Disaffected Crohn’s Patient, Cannabis Refugee, Attorney” and medical-industrial resister. Unlike the author, I do not think immunosuppressant drug infusions “give you AIDS“, and lately I strive to avoid the words “patriarchy” and “capitalist.” I nonetheless find her writings compelling and insightful.

The thought of being a medical patient for life, leashed to the hospital, costing “the system” many times what I will ever earn, has been a blow to my self-esteem. Have I become a mere parasite?  NO! Quite the opposite.

“Professional patient” sums up my new life since my Crohn’s diagnosis. Thus far I have been more than willing to “submit to painful, stressful, dehumanizing and even dangerous medical testing and examinations; impersonal bureaucratic evaluations and determinations about your condition; and usually, to accept treatment.” Apparently, this is how I contribute to the economy. Not by being actually productive in any way (the arts, while being a crucial part of society, never paid well despite my productivity) but by being a reason doctors, nurses, medical technicians, pharmaceutical salespeople, researchers, scientists, patent lawyers and others have jobs. Without patients there would be no medical-industrial complex. Without a medical-industrial complex, there would be no treatment of expensive infusions, and no accompanying hope my Crohn’s disease might go into remission so I could someday be able to eat real food again.

Crohn’s sucks, but at least I have a “job.”



I was prescribed a “biologic” drug to treat the moderate-to-severe Crohn’s disease I was diagnosed with in December. It is called Skyrizi and it costs about $20,000 a dose.

My prescribed regimen includes hospital-administered infusions every 4 weeks for 3 months, followed by home dosing via patented (ugh) “on-body injector” device every 8 weeks. Assuming 8 doses in 2024 (I got my first infusion January 5), at the 2023 price of $19,734.61 per dose, my insurance will be paying $167,876.88. I hope they’ve negotiated a better price; assuming a generous 50% discount the total would come to $78,938.44.

That is many times what I earn annually.

Now, I could try to earn more. Being a famous cancelled artist doesn’t pay much, but I have low expenses; for the last several years I have qualified for Medicaid, which, in Illinois, is by far the best insurance I have ever had. If I earned more, I would lose my Medicaid, have to shell out for private insurance premiums and deductibles, and get stuck with hefty co-pays on my absurdly expensive Crohn’s treatments. I would lose money; I can’t afford to earn more.

“Working for a living” is often called “reality.” I work for a living, modest as it is. But do I really? What’s going to ensure I keep living (if it works) is a drug that costs about $150,000 a year, every year, forever. So I am now a big net drain on the economy, and in light of this my earnings feel ridiculously performative: “Income Theater.” 

I will continue to “earn” (LOL) so I can have things like clothes and food and bike parts, electricity and water and heat and garbage collection, art supplies and maybe (maybe!) even occasional travel. Medicaid doesn’t pay for those. I’m pretty sure qualifying for Medicaid means I also qualify for SNAP (aka food stamps), which I’ve never applied for. I have some pride; I can afford food, if not health insurance. But food is getting more expensive, and pride seems absurd now that the State is paying nearly ten times my annual income on a drug friends tell me is advertised on television (no wonder it costs so much! Spots on SNL aren’t cheap).

I could also claim Crohn’s as a disability, which would give me a tax credit. Nice!

I must say I am now treated better by the local hospital system than ever before in my life. My appointments are scheduled swiftly; I have a responsive Nurse Practitioner overseeing my treatment, plus a “nurse navigator” to help with odds and ends, plus a “nurse ambassador” from AbbVie Pharmaceuticals, in case there’s any problem with home delivery of my medication in the future, or if I use the device incorrectly. In the past, the local hospital has been absolute shit to me. But now I’m a $150,000-a-year income stream, and doors open everywhere. 

If my symptoms improve, I will continue taking Skyrizi for the rest of my life or until it “poops out.” Biologic drug efficacy can last a few years, or over a decade, by which time some new expensive treatment will be on the IBD scene, or society will have collapsed.


Dave King Memorial Blogpost

Dave was hella funny and brilliantly creative and kinda nuts, with a good heart that just stopped January 11, 2024. We both had comic strips in the Daily Illini in the late 1980’s; his, “Bob ‘n’ Dave,” was clever, hilarious, gonzo, and unpretentiously deep. Much later, as the Duke of Uke, he made “Spider Suite” which I used in my film Seder-Masochism. His was the absolutely perfect voice of Death, and if there is an afterlife I hope he’s simultaneously entertaining and scaring the pants off any souls he meets.


MK and Alex’s Wedding Ceremony

My friends MK and Alex asked me to officiate their October 27, 2023 Halloween-themed wedding in Houston, TX, and I was honored to oblige. Below is the ceremony I wrote for them.

Welcome to MK and Alex’s wedding! Please silence your phones and devices and put them away. There’s a professional photographer here, you don’t need to take photos.

My name is Nina Paley. I met MK and Alex just before a screening of my film Seder-Masochism in New York. The festival director had just whispered to me they’d gotten complaints about me being a “TERF”. As I wandered around in a familiar despair, a young woman introduced herself to me. “We love your work,” she said enthusiastically. And then, conspiratorially, “and also your ideas.” That perked me right up. Shortly after the screening we visited a vegan restaurant together. MK and Alex were still shell-shocked from the social implosion of the anarchist vegan co-op house they’d helped create. They were so smart, creative, and optimistic, I was utterly charmed by their tales of getting bashed up by idealism’s inevitable horrors. A year or two later they emailed me about their new women-centered feminist social media site, Spinster. I became a moderator, joined them on a visit to California, saw MK at the Michigan Framily Reunion, interviewed Alex and MK separately on the Heterodorx podcast, and otherwise follow them online. MK and Alex are a couple of brave and brilliant pioneers who have been through a lot together. Their relationship has already outlasted any of mine by a factor of at least two, so I am pleased to officiate their union.

Dearly Beloved, we are gathered here today in the sight of God and these witnesses and the spectre of disappointed Radical Feminism to join together MK and Alex in holy matrimony; which is either an honorable estate instituted of God, or the maintaining of women as chattel property in Patriarchy. Into this holy estate, or disgrace to women’s liberation, these two persons present come now to be joined. Therefore, if anyone can show just cause why they may not be lawfully joined together, let them speak now or forever hold their peace – Radical Feminists excepted, they’ve already heard our arguments, Alex and MK really really REALLY want to get married anyway for some reason. Maybe they want to make babies? We know what causes that, talk to me after the ceremony and I can explain. 

At this point in the ceremony it is traditional to read from the Apostle Paul, The first letter to the Corinthians, Chapter 13: Love is patient, love is kind, blah blah etc.

Now I shall read from by Toerien and Williams, “In Knots: Dilemmas of a Feminist Couple Contemplating Marriage” page 434:“…marriage remains thoroughly tainted by being a long-standing buttress for the patriarchal domination of women.” 

MK and Alex, you have come together this day so that God may seal and strengthen your love in the presence of this gathering, and the Patriarchy may further enforce oppressive gender norms. I ask you to state your intentions: Have you both come here freely and without reservation to give yourselves to each other in marriage? As if anyone has free choice uninfluenced by society? If so, answer by saying ‘I have.’ (I have.)

MK and Alex will now exchange vows. (Vows recited)

MK and Alex will now take off the rings they’ve been wearing for 6 months and pretend to exchange them, just as they will pretend the relationship they’ve been in for the last seven-and-a-half years will be consummated after this ceremony.

Alex, as you place the ring on MK’s finger, repeat after me: With this ring, I thee wed.

MK, as you place the ring on Alex’s finger, repeat after me: With this ring, I thee wed.

In so much as MK and Alex have consented together in holy wedlock, and have witnessed the same before God and this company, having given and pledged their faith, each to the other; by the vestiges of disappointed Radical Feminism, I pronounce you Adult Human Female and Husband. 

You may kiss the groom. Or not; your body your choice!