What Are Quilters Blogging About Today?

What’s a good shorthand for bronchiectasis sufferers? People with Crohn’s disease are sometimes called Crohnies. I suggest people with bronchiectasis should be referred to as Bronchies. That of course suggests images, so I drew two:

Until recently bronchiectasis was classified as a rare disease. The symbol of rare diseases is the zebra.

You’re welcome.

The post Bronchiectasis Mascots appeared first on Nina Paley.

The post Autoimmune Disease appeared first on Nina Paley.

For my 57th birthday I got a diagnosis of Bronchiectasis, a chronic incurable lung condition often associated with Crohn’s disease.

In addition to coughing for the rest of my life and being extremely susceptible to infections, there’s the problem of pronouncing it. The syllabic emphases are like “bronchi-ecstasy,” although it is in fact bronchi-agony.

Or, as my friend Caroline called it, Brontosaurus Ecstasy:

A week ago, the day after my birthday, I went to “Convenient Care Plus” because my pinkeye and nosebleeds had returned and my cough never left. They gave me a CT scan ...

In March 2023 I got COVID which kept me in bed for 6 weeks. The following month it kept me in bed every other day. After that I got back to normal, except my body temperature remained a degree-and-a-half higher than before and, unbeknownst to me at the time, I developed Crohn’s Disease. I was diagnosed by the end of that year, and the first few months of 2024 I spent with worsening symptoms while getting infusions of Skyrizi, a monoclonal antibody treatment. It kicked in after about 4 months and I stabilized by Summer 2024.

Skyrizi is an ...

What does one wear to a $20,000-a-dose drug infusion? At least one person suggested a tiara and evening gown.

One Skyrizi intravenous infusion dose is 600mg, or 2.1164 .21164 ounces. At $20,000 per dose that’s $9,450 $943,333 per ounce.

CORRECTION: my math was off by a factor of 10. Via JO 753 in a comment below:

“There are 28.3 gramz per ounse. 600 milligramz iz .6 gramz, so an ounse iz 47 dosez. Thats 943,333$ an ounse.

No ...

My “biologic” drug infusion regimen, I mean.
I think my Crohn’s disease is going into remission.
I’ve done some food experiments and have been pooping like a boss.
I don’t trust that I’m fully back to normal yet – I’m still not going to experiment with chocolate or nightshades – but yeah, I think it’s working.

My third and final hospital-administered Skyrizi infusion is this Friday. To celebrate its ridiculous $20,000-a-dose price tag I’m bringing a tiara, a rhinestone-studded purse filled with fake money, and – finally – some hope ...

Depression is the mind attacking itself. It’s been called a “psychic autoimmune disease.”

This morning, part of me woke up asking, what can I fix?  What problem can I attack?
I know — ME!

My motives are good: what can I purify and improve? But the target is wrong.

My impulses — to fix, to cure, to control — may be overactive and delusional, just as my immune system is overactive and confused. My Crohn’s disease is treated with immunosuppressants, designed to calm down the immune system.

My mind, over time, has learned to calm down ...

Shortly after my Crohn’s diagnosis, I bought a masticating juicer:

A masticating juicer, sometimes referred to as a slow or cold press juicer is simply a style of juicer that crushes juice out of ingredients at a slow speed. In typical masticating models, juice is extracted from foods through a strong augur/screw, which pushes ingredients at high pressure against a fine screen/sieve. This not only forces juice out of ingredients, but it is a very efficient method to ensure that all juice produced is kept separate to ...

In general:

Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19

High risk of autoimmune diseases after COVID-19

Patients with COVID-19 have 43% increased risk for new-onset autoimmune diseases

Autoimmunity is a hallmark of post-COVID syndrome

Inflammatory Bowel Disease (of which Crohn’s is one):

SARS-CoV-2 infection as a potential trigger factor for de novo occurrence of inflammatory bowel disease

Crohn’s Disease (my personal form of CRAP):

COVID-19 as a Trigger for De Novo Crohn’s Disease

Psoriasis (my other personal form of CRAP):

New Onset and Exacerbations of Psoriasis Following COVID-19 Vaccines: A Systematic Review

New-onset and flares of ...

Further to my “disciplined” Crohn’s diet, it is like walking a tightrope. As long as I stay on the extremely narrow, I’m okay. But if I make even a small mistake, the consequences are swift and painful (and gross).

(Not a $150 Drawing, but looks like one.)

The post Tightrope Diet appeared first on Nina Paley.

“I admire your discipline,” said a friend, referring to my extremely strict, narrow Crohn’s diet. But there’s nothing to admire, because it’s not SELF discipline. It’s being subject to a brutal, sadistic “disciplinarian” that punishes the hell out of me if I make one false move. If you had this taskmaster you’d be “disciplined” too.

(Not a $150 Drawing, but looks like one.)

The post My Disciplinarian appeared first on Nina Paley.

Sometimes I miss food.

By food I mean Indian food, Thai food, Mexican food, salsa fresca, salads, pizza, pasta, and my homemade bread and soups: tomato, lentil-kale, vegetarian chili. Tortilla chips, potatoes with skins on, sesame seeds, nuts, herbs, and Numb Oil Tofu from Golden Harbour.

I miss eating with others. This genuinely lovely article by Brandon Showalter felt like a knife in my heart:

“Why have I been doing this, you ask? And how do I do it in light of such deep and profound differences among us? It’s actually not that complicated. As my past and present ...

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 ...

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 ...

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 ...

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 ...