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February 1, 2024
My Auxiliary Digestive System from Nina Paley

I have a machine that chews and poops for me!

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 ...

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January 30, 2024
Covid Reactive Autoimmune Pathology from Nina Paley

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 ...

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January 23, 2024
My Disciplinarian from 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.)

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The post My Disciplinarian appeared first on Nina Paley.

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January 21, 2024
Getting the monkey off your back! from Crazy Quilter on a Bike!

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 ...

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Little Miss Food from 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 ...

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January 19, 2024
Health wake-up call! from Crazy Quilter on a Bike!

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 ...

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January 17, 2024
An almost clean bill of health from Crazy Quilter on a Bike!

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 ...

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January 16, 2024
Medical Impostor Syndrome from Nina Paley

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 ...

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January 15, 2024
Professional Patient from Nina Paley

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 ...

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January 14, 2024
Crohnomics from Nina Paley

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 ...

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December 14, 2023
Bat Mitzvah from Nina Paley

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.

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The post Bat Mitzvah appeared first on Nina Paley.

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Crohn’s Haiku from Nina Paley

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

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

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October 23, 2023
Good News, and a Birthday from Romany Quilting

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!

P1040075

We had ...

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October 17, 2023
Shopping and Voting from Romany Quilting

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

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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 ...

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September 10, 2023
Classes starting October 2023 from Crazy Quilter on a Bike!

I am NOT a medical expert, but someone commented on the blog about my knee issue. They suggested that the meniscus was FOLDED rather than compressed (as was my description). The traction separated the joint enough for it to unfold, which was a super easy fix for a very painful situation. WOW -- that makes total sense. Let's say that I will keep that fix in mind for the future. 

Can you see me on a future hike, trying to engage someone in pulling HARD on my leg to open up the knee joint? Yep -- I can just see that ...

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September 9, 2023
Colour Change from Romany Quilting

The colour for those of us taking part in the Rainbow Scrap Challenge (RSC) has changed this month to aqua.  In my mind, aqua also encompasses the  shades of turquoise and teal.  Once again, not shades I have a huge amount of, but I found enough strips and small pieces to cut and stitch blocks for my two Little Bricks projects.

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Little Bricks

We took a trip up to Palmerston North on Thursday to get the many staples removed from Robin’s knee, in fact we counted 28 of them!  The nurse had some sort of handy little implement which ...

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September 3, 2023
Knitting, a New Knee, and Quilts from Romany Quilting

It’s been quite a week.   The date for  Robin’s second knee replacement had finally rolled around, and on the day prior he needed blood tests done, and we were both asked to take a RAT test each, to prove we were Covid free.  Luckily the tests were negative, always a bit of a worry as we had one friend who had his surgery deferred for quite some weeks as he had caught Covid.  The alarm clock was set on Tuesday morning for 5.00am, and we were out the door and driving at 6.00am to Palmy in ...

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August 31, 2023
On A Break from From the Strawberry Patch...

You might have thought that I've been on a break. Well, let me tell you, it's not been an intentional one (however break may just be the operative word here). I've got lots to write about and plenty to catch up on; that will all happen soon enough. But, in the meantime, I've been sidelined with a cracked distal radius bone. Yep, that's me and, of course, it's my right wrist. Sigh. Every event

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On A Break from From the Strawberry Patch...

You might have thought that I've been on a break. Well, let me tell you, it's not been an intentional one (however break may just be the operative word here). I've got lots to write about and plenty to catch up on; that will all happen soon enough. But, in the meantime, I've been sidelined with a cracked distal radius bone. Yep, that's me and, of course, it's my right wrist. Sigh. Every event

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June 16, 2023
It's my lucky day! from Crazy Quilter on a Bike!

Thankfully, I'm in pretty good health and don't interact much with medical professionals. However, I'm putting my new health card to the test! 

I had a physical yesterday. I didn't think they did them any longer, but my doctor wanted one done. Perhaps because it's so long since I last saw her. I laughed because she was taking my blood pressure and said, "It'll likely be high because of the pain and swelling in the knee." Nope -- she chuckled as the reading was very low! Let's hope it stays that way, as I ...

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