What Are Quilters Blogging About Today?

 It's time for a little yellow sewing - according to the RSC rules, yellow is the colour of the month.  I'm stitching several Rainbow Scrap Challenge projects, so out came the bags.  First up were the pirate blocks.  These aren't going to be done in every colour of the rainbow.  Rather, I'm picking out several colours which are featured in  the pirate fabric, and so far have done green and red.  This month is yellow, and I have light and dark blue to go, when their turn arrives.  That was easy.  

Three pirate blocks

Also easy was ...

This month the RSC colour has changed to yellow, but I'm not quite finished with purple yet.  I decided if I didn't keep plodding away on this project, it would be put away, out of sight, and forgotten about.  I know I've mentioned my former neighbour Dorothy many times, and the fact that when she moved away to go into a rest home her daughter gave me a couple of boxes of quilting fabrics.  Tucked in the bottom of one of the boxes were a pile of nine patch blocks.  I  assembled these blocks using white sashing ...

 You know what it's like when you set off on holiday - you seem to have all the time in the world and then it's all over.  We were attending our caravan club rally in Napier, with plenty of plans, people to see, things to do, plus a little shopping.  It didn't all fall nicely into place though.  On my "must do list" was a visit to Skeinz, a local company which spins their own wool.  I had found a pretty 6ply cardigan pattern for myself and was after some yarn.   Of course there were several lovely colours ...

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 ...

“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.

OH!!!! The one metric system that I have wholeheartedly embraced is temperature! So, I had to do some research on yesterday's comments. What the heck is 64 degrees Fahrenheit? We keep our house at 19 Celcius at night (66.2 F) and 21 during the day (69.8). However, as I mentioned, the temperature these days doesn't rise above 20 (68) during the day! 

But I'm good with that. I don't want it to be too hot, and I sleep with two duvets and a quilt at night and add or remove layers as needed! 

Compared ...

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 ...

NOOOOOO!!! I don't want to admit that maybe one of those little pill containers will be good for me. I know this is totally crazy, but I'm not good with taking pills since I haven't really needed to take any. However, I always remember that gummy, multi-vitamin every day! Before I resort to the weekly pill container, I will keep the Vitamin D beside the gummies. And I'll also keep the other pill bottle there, with a big label on it - Sunday! If that doesn't work, I may have to resort to the pill container ...

There are days when I feel it's Groundhog Day - the movie! Except I don't have to repeat it because I didn't get it right the first time -- it's just the routine that I'm in. And not every morning is the same since I'm off to spin class this morning, which has a different routine than if I weren't going to spin class. 

I accomplished stuff yesterday! The writing went well, and I'm onto the next project, so that's a bonus. It should be a fun day as I have some samples ...

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 ...

A poem about connecting with my Ashkenazi heritage.

Today I am a woman.
Today I am a Jew.
Today I have an ailment
my ancestors all knew.

For many generations,
my Fathers’ guts have hurt.
My Mother can’t eat chocolate:
a most unjust dessert.

I gather all my chocolate;
I give it all away.
No more can I digest it,
And I have Crohn’s today.

I feel myself much older
than I have ever known.
Today I have a Crohn’s disease;
Today I am a crone.

The post Bat Mitzvah appeared first on Nina Paley.

Diagnosis: Crohn’s.
The Autoimmune Empire
has colon-ized me.

The post Crohn’s Haiku appeared first on Nina Paley.

There was excellent news for Robin at his appointment with the orthopedic surgeon last week to check on his knee replacement.   There were x-rays on the monitor showing the replacement pieces, and everything looked nice and straight, we were told.  The wound has healed nicely and Robin’s knee movement is excellent.  We were told that slow improvement will happen over the next year or so, but everything looks fine, and he can do away with the sticks.  Yes, he is cleared to drive, so a caravan trip will be happening in the near future.  Yippee to that!

We had ...

I’ve got a very important quilt to make, so I took a trip to my local quilt shop, Fox’s Cottage.

My daughter Nicky has a big birthday coming up, but not for a while, so I’ve got plenty of time to think about it.  After I made her a birthday quilt for her 40th birthday, then her 50th, I presumed she would like another when she turns 60.  Yes she would, she replied excitedly.  We had talked colours and designs, and she had sent me several photos she had found on the internet.  Nothing sharp and pointy ...