Costco’s wayward catalogues

We keep getting Costco weekly specials to a PO Box we don’t use much… never mind that we aren’t shopping at Costco (Life Pro Tip: we have a membership only to access their reasonably priced Delta Dental plans), but also we don’t want wasted paper and space in our tiny post office box.

I suggested my partner find a phone number on the catalogue to call, to get us off the mailing list. After waiting on hold for 30 minutes, he finally got a human, who insisted she couldn’t talk to anyone but me because my name was on the account. (Never mind that I know my partner is an administrator of the account too.)

I’m in the middle of a busy work day. He passed me the phone and I quickly rattled off our addresses and my birthdate to “verify” who I am. (Never mind that the address is on the envelope, and my DOB is public record nowadays…) She offers to make my spouse an administrator so he can handle this BS, I thanked her and handed him back the phone.

He’s explaining that we don’t want paper mailings at any address on file, and the rep is insisting that we opted out of paper already, but cannot explain why we are looking at a brand new mailing received this week. No offers to ask someone higher up, just the suggestion it might be because we purchased goods from Costco.com (we haven’t, and never mind that her phone number is the one on the catalogue to opt-out)… so nothing was resolved.

Talk about bullshit jobs…

I’m tired of disposable tech

I feel like device manufacturers have moved entirely away from practicality and utilitarianism. Everyone loves a shiny new device, but I’m so tired of devices that feel like they aren’t designed to be USED.

A few months ago, we splurged on an entirely frivolous device: we bought a tablet. We don’t actually NEED a tablet, because the work we do is on laptops and phones. But as a chronically ill person, it would be nice to rest in bed and be able to watch things on a screen larger than my phone. (I could watch on a laptop, but that wasted valuable hotspot data.)

So we bought a Samsung Galaxy Tab A, because it was on the more affordable side, and we got a fairly decent deal to add it to our cell plan. We use it every night. We’ve stopped watching TV and I’ve stopped wasting valuable energy trying to figure out how to download things to a device that can be watched in bed. Honestly, I kind of wish we’d done this sooner, but it’s such a frivolous thing. And we aren’t very good at buying frivolous things.

This tablet is pretty good, but has limited on-board storage. We held off buying a micro SD card because money and frivolities, but this weekend we finally bought two 128 GB cards so we can download our favorites for enjoying when our signal sucks or the network is bogged down with other streaming RVers.

Of course we got a cozy little case for it, because we are klutzy and they never make these devices sturdy on their own. The case is slim, like the tablet itself, and it’s a pain to remove. This time, when I removed the case I (with my fairly limited strength) managed to physically bend the tablet and crack the back. Miraculously, the screen is still intact. (Thanks, liquid glass coating.) The display does look a little discolored around the edges.

Arrgh.

This is why we can’t have nice things.

Supplements… again.

Turmeric has been found to be helpful with some types of pain and inflammation. My doctor recommended a supplement that combines turmeric with fenugreek, because apparently this combination is better than turmeric alone.

She recommended Turmeric Forte, which is manufactured by Mediherb in Australia, but the only company who can sell it is Standard Process in the US. Trying to find information about gluten-status is… difficult.

I left two messages in December for a callback from QA, and no one called. I called again this month to try again. I got more info, but it wasn’t good info.

Is Turmeric Forte gluten-free?

Mediherb manufactures their capsules in a gluten-free facility, and they test every batch for the presence of gluten down to 5ppm, which is outstanding. That alone is very safe for me and nearly anyone with celiac.

But then those capsules are shipped in bulk to Standard Process, who then takes this nearly pristine gluten-free product, and bottles it on the same equipment that they use to bottle all their oat- and gluten-containing supplements.

But Standard Process tests their products for gluten, right?

Nope.

They don’t test their bottled lots and they don’t test the equipment after cleaning to confirm the cleaning was effective.

When I spoke with their QA person, they had nothing to say. They seemed unconcerned that they could be adding gluten to a GF product.

Products like that aren’t for people like me.

But it blows my mind that I have always had such a hard time finding work while companies are totally okay with sloppy QA or sloppy IT. I don’t get it.

Anyway… The history of Standard Process is shady as heck.

Gluten-Free-ish Oreos

Nabisco has been talking up their new GF Oreos since last year, even though they wouldn’t be released until this week.

They’ve been pretty tight-lipped about it, officially. There were pretty social media posts with a classic Oreo, and a few words about them being gluten-free. But no details: what ingredients would they be using? Would they be dairy-free, egg-free, and vegan like the original? Is there a new dedicated GF facility for GF Oreos? There was nothing on Nabisco’s websites.

Well now they’re in stores, but nothing’s changed. GF Oreos are still not on the company’s websites. I tried to find an ingredients list, but the closest I could find was an MLive article talking about trying them.

They’ve got rice flour (not surprising) and… oat flour.

I don’t think oat flour is safe for celiacs. Maybe some can eat them without symptoms, but I am unconvinced silent damage isn’t happening. My reactions to GF oats are so severe, just as severe as consuming gluten grains, that I may as well be eating wheat.

If nabisco cared about the celiac demographic, they wouldn’t have used oats. Oats are a lazy way to make food that can be labeled GF. GF oats are easy to acquire now, and GF labeling rules are lax. So instead of making something that’ll be enjoyable by the largest number of people, they go for the largest marketing gimmick and the fad dieter demographic.

I don’t really miss Oreos, but I miss convenience and normalcy and the fun of sharing a treat with someone. I don’t even want to give money to companies like Nabisco. It’s not like I’d be making Oreos a regular part of my diet, or anything more than a rare treat.

But gimmicks like these just make me feel more excluded from the modern world.

Book: “Body Respect” by Lindo Bacon and Lucy Aphramor

Body Respect: What Conventional Health Books Get Wrong, Leave Out, and Just Plain Fail to Understand about Weight is the follow up to Health at Every Size, a science-packed book about body size and weight loss. Body Respect is geared towards anyone interested in evidence-based healthcare and a more just world.

The reality is that diets don’t work. While many people may be able to lose weight in the short-term, the act of restricting calories (through diet, exercise, or both) results in complex biochemical changes that trigger profound negative effects on metabolism, stress levels, mental health, and many other important aspects of health in the long term. It’s not that people aren’t dieting properly (in fact, humans are really really good at it), it literally means that diets don’t work, and in fact backfire the vast majority of the time.

This book was empowering and an important read packed with science and a rational approach to what’s wrong with diet culture, the media, and current approaches to healthcare.

The messy world of supplements

A delayed celiac diagnosis means I struggle with adequate nutrition. I’m still combatting a lifetime of unabsorbed nutrients. It’s exhausting.

I have to rely on supplements in some cases, and supplements are the Wild West of the nutrition world. Little regulation goes into them, and it’s entirely possible that vitamin bottle doesn’t contain any vitamins at all, and the only way you’ll ever know is if someone tests it, or if it contains something risky and someone gets hurt.

I am allergic to lanolin, which is used to produce the majority of vitamin D3 supplements. D3 seems to be better absorbed by most people (especially those with gut problems) compared to non-lanolin derived D2. I took massive doses of D2 for months with no impact on my single-digit levels. I managed lanolin-derived D3 for awhile, but eventually the allergy symptoms got too severe. In the last several years, a vegetarian source of D3 has been discovered (lichen), which works well enough.

A new bottle of D3 I recently purchased caused me a lanolin-like reaction. I decided to write the company, because it seemed like the wrong D was in the bottle. I emailed the company with the lot number, explained the situation, and hoped they’d look into it.

They contract with a 3rd party QA service, which asked me to call them on the phone. I talk on the phone a lot for work and I’m exhausted. I asked if they would work by email. The email bounced back and there is no way to get a hold of them without calling on the phone.

I emailed the manufacturer again and explained I am tired and disabled. I’m happy to help you with this free labor, but please let me do it by email. They said they would.

I never heard back from them, and today I got an email reply, weeks later, claiming I gave them an invalid lot number so the case was being closed. I checked my sent mail, and the lot number they’re working on is different than the one in my original email.

Seems like working by email should prevent this, because everything is in writing, but the communication still got all bungled up.

I replied with the correct lot number, but who knows what’ll happen.

No one even offered a coupon for the two brand new bottles of D3, which are medically necessary but unsafe to take.

Celiac + allergies under capitalism is a dangerous existence.

Book: “Jennifer’s away” by Jennifer Esposito

I have been intrigued by Jennifer Esposito since she left a hit TV show due to celiac disease. She even wrote a book about it: Jennifer’s Way.

It turns out it was more complicated than that: her celiac disease is very severe (like mine), and her acting job was full-time hours at part-time pay without any accommodations for celiac. She became very ill and still got no accommodations.

It’s nice reading experiences of people with celiac as severe as mine. It’s validating and reassuring to know there are people who are as profoundly affected by this disease as I am. It’s important to hear people reiterate that this is an autoimmune disease, and it is serious. And it’s relevant to know that even thin and conventionally attractive women are not believed, or even committed to psych hospitals, before diagnosis (and sometimes after).

The first 2/3 of the book is her celiac story. It’s compelling and heartbreaking and infuriating and familiar. An illness so severe that it causes permanent damage, and takes an average of a decade to be diagnosed, with the simplest medical treatment in the world.

The rest of the book is about how to get diagnosed and adjust to post-celiac life. It’s the usual stuff about kitchen and bathroom products going to dumpsters, about missing nutrients, and navigating social situations. It wasn’t news, but it was interesting… until I read the part about lemon juice being alkaline and how important it is to make your body less acidic with foods like lemons and grapefruits.

It’s hard to take the rest of the science seriously when such a fundamental fact is mistaken.

Lemon juice has a pH of 2. It is unquestionably acidic. I believe this started when the Food Babe made these same claims.

I did learn (and confirmed elsewhere) that 90% of serotonin is produced in the small intestine… which explains a lot of mental health problems that pair well with celiac disease.

The lemon thing made me put down the book, though.

Bad covid science

Today a nurse tried to say “Damn China since the news has finally agreed it is a man-made virus from the Lab in Wuhan.” A quick search brought up Snopes’s take, and “all” the media outlets are right wing or known tabloids… hardly “all.”

I’ve had a lot of bad healthcare experiences in my life. It’s hard to trust any of them when you don’t know which ones are buying into this drivel.

It’a dangerous out there for patients.

I don’t do resolutions

But I think I’ve got some advice for myself in 2021:

  1. Put on my own oxygen mask before helping others with theirs.
  2. No one knows more about me than I do. Time to act like the expert I am.
  3. My story is worth telling.

things that are no more

i was trying to dig up an old post about my internet setup from when we first moved into the RV. I was using a “lollipop,” as part of a project I had worked on. Apparently the website for the project is now defunct, as tends to happen with projects that don’t go anywhere. I did find my original post about the technical aspects of my setup (where I also apparently learned Hugo once already, but I clearly forgot everything since it felt like new when I did it again most recently; but that’s okay because I moved GFRV over to WordPress ages ago)… not the post I’m looking for, but that’s okay. I haven’t used the Lollipop for over a year now anyway.

I also found where I posted here about Ginger’s passing. I understated my grief back then. Her death was heartbreaking. I miss her every day. She was the best kitty BFF a person could ask for. She was perfect in every way.