deirdre: (Default)

Dear FDA,

Sadly, I can’t attend the meeting in College Park, Maryland today regarding public comments in preparation for the International Cooperation on Cosmetics Regulation conference in November, but I’m emailing my input.

Issue 1: Sunscreen Approval

My first issue: the United States treats new sunscreen UV filtering agents as though they are new drugs, where the industry leaders (meaning: EU, Japan, Australia, and Korea) in sunscreen research and development treat them as cosmetics. Therefore, there is a huge burden in bringing new UV filtering agents to market.

Thus, the United States lags almost two decades behind these other countries in sunscreen agents. In the last ~18 years, we’ve had one UV filtering agent approved for one single SPF 15 (!) sunscreen.

While I can certainly see reason for caution, we’re far more permissive in other things that go directly on a consumer’s skin which may not provide the results alluded to by the marketing hype.

If a UV agent’s already approved in the EU and Japan, how about we allow it to be used in the US?

Issue 2: Allergens

I know the cosmetic industry will never agree to this, but I have to bring it up: it’s easy to label cosmetics for things like hydrolyzed wheat protein and hydrolyzed wheat gluten—because they’re used in almost zero cosmetics. Though, as a celiac, I do appreciate the labeling even though it’s not the limiting factor for me.

What would be hard to do is to label cosmetics for tree nuts, because that would include coconut.

Coconut derivatives are in almost all facets of cosmetic formulations: from the stearic acid that thickens mascara, the sodium laurel and laureth sulfate that comprises one of the first two ingredients of almost all commercial shampoos, and the surfactants, emollients, and emulsifiers that make commercial products look and feel like they do (and stay in solution through several coconut-derived versions of PEG, as well as many that are not coconut-derived).

However, it really would be nice to actually not have to look up ingredients to see if they’re likely to be coconut derived. Then I won’t have to wonder why I suddenly reacted to this one product, as I might actually know if they changed from a palm source to a coconut one.

A surprisingly large number of people react to coconut-derived sulfates and coconut-derived fatty acids, among other things, and that’s not even getting into the palm sources of, say, glycerin.

But please, given how prevalent coconut is, could we possibly consider it an allergen some day? I was married to a soap chemist and had 34 new-to-me brands of shampoo to try (driven in from Canada) to determine what my allergy was. Most people just have the mystery acne, and are given dermatology formulas that, no joke, contain more of the exact same allergens.

Thank you for listening. I’m really looking forward to hearing more of the conference’s progress.

Signed,
Deirdre

Why I Wrote In….

Two years ago, I ran out of sunscreen before arriving in the Maldives. I went to the gift shop, where the only thing they had was something they described as a “total block.” Which, short of a space suit, seemed rather optimistic and improbable.

I didn’t know how to evaluate the ingredients on the label, but I did notice that the two physical sunscreen blocking agents I knew about—zinc dioxide and titanium oxide—were nowhere to be found.

Fortunately, the hotel had another gift shop. I strolled over there, only to find that they had a very reasonable SPF 50 sunscreen.

What I didn’t know at that time was how incomplete my understanding of sunscreen was, nor why my lack of knowledge was so important.

A Quick Primer on UVA and UVB

UVA and UVB penetration. Illustration © edesignua and used with permission.

UVA and UVB penetration. Illustration © edesignua and used under license.

UVB (think “burning”) penetrates the epidermis with rays between 290 and 320 nm.

UVA (think “aging”) was initially thought not to cause skin cancer. Unfortunately, it’s highly associated with cancer. It penetrates down to the bottom of the dermis. Tanning also happens with UVA, so for a long time it was thought that if you blocked UVB, you’d encourage a nice healthy tan while preventing burning and skin cancer. UVA is broken into two wavelength bands: UVA1 (340-400 nm) and UVA2 (320-340 nm).

SPF ratings are only for UVB. There is no rating system, nor any requirement to even mention UVA in American cosmetics. Sure, a product can use the “broad spectrum” phrasing, but there’s still no requirement that it be world-class UVA protection.

Japanese and Korean skin care uses a PA rating system with pluses to rank effectiveness of UVA blocking up to a maximum of four pluses. There are also other methods in use outside the US. Some are better than the Japanese/Korean system

Why US Sunscreen Is So Awful

In the US, sunscreen is considered a drug, thus new blocking agents have to be approved by the FDA. That means a company needs to sponsor the research (which costs millions) and lead the blocking agent through the whole approval process.

Which is fine if you’re a company that is patenting a drug where the exclusivity will, one hopes, pay for the approval process.

In the case of sunscreen blocking agents, however, they aren’t patentable (they’ve been in use too long), so one company would be spending a ton of money to allow other companies to profit equally, but without having spent the cost for approval.

So if a sunscreen agent is past the useful life

Hence, there is zero corporate incentive to get new blocking agents through the approval process, and we all suffer as a result. Yay, capitalism.

Worse, there had been at least eight new (to the US) sunscreen ingredients waiting for approval for more than five years. The ironically named Sunscreen Innovation Act, passed in 2014, was supposed to help us catch up with the rest of the world.

Speaking of Capitalism…

Thus, Americans respond to signs of aging after the fact rather than with prevention. This is a big part of the reason the US share of the global botox market is predicted to reach $2 billion annually by 2018.

While botox is used in non-cosmetic procedures such as stroke rehab and migraine prevention, much of the US market is about wanting to reverse aging signs in skin—aging that could have been prevented, in part, by better sunscreens.

Chemistry: Which Agents Are Approved Where

I’m only going to show US 🇺🇸, Australia 🇦🇺, EU 🇳🇱, Japan 🇯🇵, and Korea 🇰🇷 since that will cover most of my readers as well as the products I’m talking about. Heavily borrowed from the Wikipedia Sunscreen page and this skincancer.org page; where they disagree, I’ve used the Skin Cancer site’s answer. Note: I’ll use the French flag 🇫🇷 instead of EU flag 🇪🇺 as there is no emoji support in Mac/iOS yet for this emoji.

Korea 🇰🇷 information is currently incomplete as I’m only listing agents I’ve looked up that are included in Korean sunscreens or which were on a 2008 chart. Also, as there are almost a dozen sunscreen agents on that chart approved only in Japan, I’ve omitted those.

Ingredient Other Names Approved In Protects Against
4-Methylbenzylidene camphor Enzacamene, Parsol 5000, Eusolex 6300, MBC 🇦🇺 🇫🇷 🇯🇵 🇰🇷 (may be endocrine disruptor) UVB
Amiloxate Isopentyl-4-methoxycinnamate, Isoamyl p-Methoxycinnamate, IMC, Neo Heliopan E1000 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVB
Avobenzone 1-(4-methoxyphenyl)-3-(4-tert-butyl
phenyl)propane-1,3-dione, Butyl methoxy dibenzoylmethane, BMDBM, Parsol 1789, Eusolex 9020
🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVA1, UVA2 (some sources say UVA1 only)
Cinoxate 2-Ethoxyethyl p-methoxycinnamate 🇺🇸 🇦🇺 🇯🇵 🇰🇷 UVB
DEA Methoxycinnamate   🇦🇺 🇰🇷 UVB
Dihydroxybenzophenone Benzophenone-1 🇯🇵 🇰🇷 UVA2, UVB
Dioxybenzone Benzophenone-8 🇺🇸 🇦🇺 UVA2, UVB
Ecamsule Mexoryl SX, Terephthalylidene Dicamphor Sulfonic Acid 🇦🇺 🇫🇷 (limited 🇺🇸 use via new drug approval, L’Oréal exclusive) UVA2 only
Homosalate Homomethyl salicylate, HMS 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVB
Menthyl anthranilate Meradimate 🇺🇸 🇦🇺 UVA2 only
Mexoryl XL Drometrizole Trisiloxane 🇦🇺 🇯🇵 UVA2
Neo Heliopan AP Bisdisulizole Disodium, Disodium phenyl dibenzimidazole tetrasulfonate, bisimidazylate, DPDT 🇦🇺 🇫🇷 🇰🇷 UVA1
Octocrylene Eusolex OCR, 2-Cyano-3,3-diphenyl acrylic acid, 2-ethylhexylester 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 (increases ROS) UVB
Octyl methoxycinnamate Octinoxate, EMC, OMC, Ethylhexyl methoxycinnamate, Escalol 557, 2-Ethylhexyl-paramethoxycinnamate, Parsol MCX 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVB
Octyl salicylate Octisalate, 2-Ethylhexyl salicylate, Escalol 587 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVB
Oxybenzone Benzophenone-3, Eusolex 4360, Escalol 567 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVA2, UVB
p-Aminobenzoic acid PABA 🇺🇸 🇦🇺 🇯🇵 🇰🇷 (banned in 🇫🇷 because of DNA damage) UVB
Phenylbenzimidazole sulfonic acid Ensulizole, Eusolex 232, PBSA, Parsol HS 🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 (genotoxic in bacteria) UVB
Padimate A Pentyl-dimethyl PABA, Amyl p-Dimetyamino PABA 🇯🇵 🇰🇷 (withdrawn from 🇫🇷 in 1989; never approved in 🇺🇸) UVB
Padimate O OD-PABA, octyldimethyl-PABA, σ-PABA 🇺🇸 🇦🇺 🇯🇵 🇰🇷 (not currently supported in 🇫🇷 and may be delisted) UVB
Parsol SLX Dimethico-diethylbenzalmalonate, Polysilicone-15 🇦🇺 🇫🇷 🇯🇵 UVB
PEG-25 PABA Uvinul P-25, Ethoxylated ethyl-4-aminobenzoate 🇦🇺 🇫🇷 UVA2, UVB
Sulisobenzone 2-Hydroxy-4-Methoxybenzophenone-5-sulfonic acid, 3-Benzoyl-4-hydroxy-6-methoxybenzenesulfonic acid, Benzophenone-4, Escalol 577 🇺🇸 🇦🇺 🇫🇷 🇯🇵 UVA2, UVB
Tinosorb A2B Tris-Biphenyl Triazine 🇫🇷 (very new) UVA2, UVB, limited UVA1
Tinosorb M Bisoctrizole, Methylene Bis-Benzotriazolyl Tetramethylbutylphenol, MBBT 🇦🇺 🇫🇷 🇯🇵 UVA1, UVA2, UVB
Tinosorb S Bemotrizinol, Bis-ethylhexyloxyphenol methoxyphenol triazine, Bemotrizinol, BEMT, anisotriazine 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVA1, UVA2, UVB
Titanium dioxide CI77891 🇺🇸 🇦🇺 🇯🇵 🇰🇷 (not approved in 🇫🇷 as a UV filter, but permitted as a colorant) UVA2, UVB
Trolamine salicylate Triethanolamine salicylate 🇺🇸 🇦🇺 UVB
Uvasorb HEB Iscotrizinol, Diethylhexyl butamido triazone, DBT 🇫🇷 🇯🇵 UVA1, UVB
Uvinul A Plus Diethylamino Hydroxybenzoyl Hexyl Benzoate 🇫🇷 🇯🇵 UVA2
Uvinul T 150 Octyl triazone, ethylhexyl triazone, EHT 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVB
Zinc Oxide   🇺🇸 🇦🇺 🇫🇷 🇯🇵 🇰🇷 UVA1, UVA2, UVB

Even excluding Japan-only sunscreen agents, there are about as many approved only outside the US as approved for the US.

Two Sunscreen Videos

The first video is from British beauty blogger Lisa Eldridge. I mention this because some of what she says is from a very EU-centric viewpoint, specifically when she’s talking about approved sunscreen agents.

YouTuber Lisa Eldridge has a rundown on sunscreens, focusing on European brands.

YouTuber faceturtle has a review of 9 Asian sunscreens.

Random Interesting Things I Found While Writing This

  1. L’Oréal is the top nanotechnology patent holder in the United States.
  2. Rick brought the Jessica Alba Honest Company Sunscreen backlash to my attention. After looking at the ingredients, I agree with much of this Forbes piece. The real problem is one of user psychology: people don’t want to be white all over from their sunscreen. By using only a single physical filter (zinc oxide, famous for lifeguards’ white noses), they aren’t offering protection to people who spread it too thinly. So, an admirable goal that has issues in the real world.

    Also, apparently there was a reformulation, then the reformulation led to unexpected drops in effective SPF due to the product settling out of emulsion (it sounds like from my reading of the article, anyway). How many people obey labels to shake the bottle?

  3. My current sunscreen, The Face Shop Natural Eco Sun Sebum Control Moisture Sun SPF 40 PA+++ uses only chemical sunscreen agents, four of which are UVB (it does have good UVA coverage through the fifth agent). Huh.

What Sunscreens Do I Use?

I have three.

The Face Shop Natural Sun Eco Sebum Control Moisture Sun SPF40 PA+++ is a Korean Sunscreen also available in US Face Shop stores. It only uses chemical filters.

La Roche-Posay Anthelios XL has some of the L’Oreal patent goodness (and nanotechnology research goodness) in it. Not for sale in the US, but you can import it from overseas; it’s cheaper to import from Europe, IME.

Bioré UV Aqua Rich Watery Essence SPF 50+ PA++++ is also really awesome.

Questions? Comments? Errors?

What sunscreen do you like?

Originally published at deirdre.net. You can comment here or there.

deirdre: (Default)

Mom’s finally moved out of the hospital into rehab, which is great. She’s there to build up strength so that they can do the hernia surgery safely. They will also have to remove her gall bladder, but that is less of a problem at this point. Unfortunately, they can’t do both at once (unless they have to to save pt’s life), since the hernia needs a clean field, and the gallbladder’s considered a dirty surgery (meaning one with lots of chance for infection).

Our friend is house sitting and cat sitting, and since the cat loves him (and will actually show up when he calls), that’s a good thing.

We’re on a trip that mom was supposed to join us on, but obviously couldn’t. We’ll do something later that’s more of a “her” trip, since this was definitely a my thing trip. She probably won’t be cleared for travel for several months, though.

Originally published at deirdre.net. You can comment here or there.

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Tree on the Beach

Photo by Thom Bouman.

Mom’s moved to a room on a different floor, so she’s now out of the ICU.

Also, Rick posted a comment yesterday that clarifies what she’s up to:

I was over there yesterday and a couple of times today, and Deirdre’s been over there, too. Cheryl started physical therapy this afternoon. Predictably and as I warned her, it was tough sledding for her. I didn’t get a full account of what they had her do, but it seems to have included her at least standing up for a while if not walking a bit.

One of the nurses was by, as was a social worker, and both separately talked to me about Cheryl’s condition and possible next steps. The nurse seemed to suggest that it’ll probably be a couple of more weeks before Cheryl can be released to the outside skilled nursing facility (SNF). The social worker detailed four SNFs in the surrounding cities we’re likely to be able to choose among, so I got the names of all of those, so we can visit them. She also speculated that Cheryl may be cleared to be transferred to the regular hospital ward and out of the ICU within a few days. The nurse suggested that Cheryl might need to do some substantial amount of physical therapy before she is cleared for the needed hernia surgery, but this sounded a lot like speculation on his part, and really, as with much else, it’s up to the attending physician. Anyway, I do agree it’s sadly unlikely that we’re getting Cheryl home for quite a few more weeks, but the good news is that she is still getting steadily better.

In other good if belated news, Cheryl is now using a CPAP ( = continuous positive airway pressure) machine, borrowed from the hospital, when she sleeps, so that she isn’t continually woken out of REM sleep by brief cessations of breathing (as happens with a small percentage of people). I am told this extra-fancy CPAP machine is technicaly a BiPAP ( = bilevel positive airway pressure) machine, in which both breathing-in and breathing-out pressures are regulated. What I hear is that Cheryl had tried and disliked the regular machine she had at home, and had given up on it and given it to Deirdre after Deirdre had a sleep study concluded that she needed one. Apparently, Cheryl is now sold on (at least) the BiPAP, if not on CPAPs generally, as she now is reporting restful sleep that she’d been unable to get before. So, obviously, she’s really needed one all along.

About CPAPs

About 25 years ago, I dated a doctor for a while. One night we spent together, he said, “did you know you have sleep apnea?”

I didn’t even know what that was, and treatment options were limited back then (even though the CPAP concept was invented in 1980), so I just filed it away and eventually looked it up.

Finally, I’d gotten enough cash to get a sleep study, and the center had a couple months of backlog. My appointment was for the end of November.

My first husband died on November 15th, and the last I saw of him was on a ventilator. The sleep study? I just couldn’t. While a CPAP isn’t a ventilator, it was just too close, and I couldn’t handle it emotionally.

A couple of years later, my dad wound up getting a CPAP and would wax poetic about how much he liked it, but the mask over the mouth still freaked me out. Then I went to Clarion, and could not stay awake. The mental exhaustion on top of everything else was too much. At that time, I wished I’d gotten a CPAP, but obviously I couldn’t in the middle of Clarion.

Then my mom got a CPAP. Tried it. Hated it.

A few months later, our friend Ross mentioned his CPAP, saying he’d been most successful with a nasal interface (aka nasal pillows). That turns out to not hit the same emotional button for me as the mouth interface. I decided to try my mom’s CPAP out.

The first night? Slime city. I’d suffered from chronic sinus problems all my life, and it cleaned everything out. Even though I got very little actual sleep, I sure felt better the next day. The next two nights I also struggled with adapting, but I slept better both nights than I had in years.

Went to my doc, told the tale (including both parents having been diagnosed), and I was pushed to the front of Kaiser’s queue for an at-home sleep study. The resp doc was on vacation the day after I saw him, but he called me from vacation to let me know that I should go in to get a CPAP as soon as humanly possible.

I’ve been on a CPAP ever since, and I’m on my third machine. I no longer have chronic sinus problems. Though I never had serious acid reflux problems, those are also rarer and less severe than they were before the CPAP. (Though that is not universal; some have worse problems on CPAP.)

There have been exactly two downsides for me. First, I’m more prone to nosebleeds than I was before, though consistent use of Ayr Nasal Gel prevents that problem. Second, I have to plan when and where I sleep more. I can’t just catch a nap and expect to be well rested.

Which is a very long way of saying: I’m glad my mom is finally happy using a CPAP, though technically, they’ve put her on a BiPAP (which has different pressures for inhale/exhale). It took me a long time to get there, but I’m glad my mom’s finally on the same page.

Oh, and a weird thing? When we got tested initially, my father, mother, and I all had the exact same air pressure settings.

Originally published at deirdre.net. You can comment here or there.

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Mom update

Two weeks and almost two days after the cascade failure, mom is off the ventilator and onto a cannula delivering extra oxygen is all that she’s got now.

It was really nice hearing her speak after so long.

Originally published at deirdre.net. You can comment here or there.

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Mom update

She’s down to two IVs: food and pain meds. Still has some of the other meds injected, but they no longer need to be IVs, which is huge progress (she was on at least three heart meds, one of which was pretty toxic but super-critical).

Physically, she was more alert and happily watching HGTV. After several days where she wasn’t seeming to want to do anything, that’s the best news of all.

Tuesday, 5/19 Update

We had a good talk with the nurse.

She’s down to half the dosage she had yesterday on pain meds, so that’s good. I had quite the scare this morning when they tried to call and I accidentally hung up when I fumbled answering the phone.

Turns out they just needed to have firm consent on one item, and even though they have her okay, she’s on strong enough pain meds they can’t assure her consent while she’s on a ventilator.

After I thought about it, I realized it was probably almost always dicey to get consent when one’s in the ICU. Which begs the question: if you are alone and have no known next of kin, what the heck are they supposed to do? That’s a really interesting question.

Anyhow, mom’s had five hours on ventilator assist, so she was breathing on her own for five hours. So they’re rehabbing her, hoping to get her off the antibiotics in a day or two, and once she’s healed from this portion, then they’re going to look at getting her hernia repaired.

Originally published at deirdre.net. You can comment here or there.

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Kitesurfing in California

This a continuation of the medical saga that began here.

Where we were as of a couple of hours ago:

  • Mom’s still in the ICU, and probably will be for at least a couple of days more. They’ve been able to keep her stable without surgery, which is good because then she’ll be more likely to survive it.
  • She still needs surgery (and recovery from same) before she can come home—and will need it before they step her down out of the ICU. Otherwise it can happen all over again.
  • Most of her numbers are vastly improved. She’s able to write almost normal size now, so her motor control’s a lot better with the current medication regimen. One of the meds I’ve been on and it makes you shaky.

I’ll add updates to this post rather than to the comments.

How The Cat Is Holding Up

I started writing this post because I wanted to say something about how our cat Tanner is handling it. We got our cat at a local shelter five years ago. Tanner bonded to my mom as her Primary Person, and she’s been just distraught since mom’s gone. Obviously, we don’t smell like mom when we come home, because hospital mom doesn’t smell like Tanner expects.

One of Tanner’s quirks is that during any period of time (and I mean weeks or months), the cat will have only one “spot” in the house. Or no spots in the house. Sometimes that’s my ottoman, but usually it’s mom’s bed. The other thing is that the cat spends most of her time outdoors, even when it’s cold and wet. She doesn’t spend time indoors when we’re not around, typically.

Rick and I (and our friend Duncan) had just gotten home from the hospital and we were calling the cat to get her to come to the back door and come in. After quite a while of that, she decided to show up from inside the house—she’d been in mom’s room all along.

Awwww.

Originally published at deirdre.net. You can comment here or there.

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First, for those of you who don’t know, my mom’s been in the hospital. The short version is that she’d had a gallstone, and that had caused diarrhea and vomiting, and she went to the ER a week ago Tuesday.

They transferred her to a hospital room. A few days ago, it looked like she’d be getting out of the hospital, and they’d do the gallbladder surgery in a few weeks when everything had calmed down.

Then she took a turn for the worse three days ago. Not a huge turn, just a slight detour. She wasn’t getting out of the hospital after all. She’d seemed better the day before yesterday, per Rick, and then somewhat more fragile last night. Not hugely so, just somewhat.

One of the things she’s complained about over the last few days is pain from a hernia that has needed repair. That, as it turns out, has been a huge factor in the cascading crisis.

I got a call at 4 am from the hospital saying they had to transfer her to the ICU. She’d gone into atrial fibrillation, and they needed to stabilize her.

I got another call at 8:30 in the morning. They had her somewhat stabilized, but there was a bigger problem: the hernia’s completely blocked, preventing things draining normally through the gastrointestinal system.

Which means, of course, she vomited up the fluids, got a significant bunch in one lung, which is called aspiration pneumonia. So she’s on 100% oxygen to help with that.

As a complication of all this, she’s also got sepsis, and they need to go in there to fix the hernia.

Except that she’s got one of the classic side effects of atrial fibrillation (and everything else: low blood pressure. They had to put her on two meds to bring her blood pressure up to a workable range.

And anesthesia will lower it. (Okay, this is an oversimplification, but a) I’m not a specialist in this area, and b) I have had two hours of sleep, so that’s as complicated as I can be right now.)

They just get her heart rhythm back to normal with defibrillation (but defib increases risk of stroke), and they think they have her stable enough to do the emergency surgery.

There are also renal failure complications and she may need to be on dialysis, but they can’t do that now because dialysis also lowers the blood pressure.

It’s a big cascade failure and they are doing what they can, but it’s pretty touch and go right now. The heart rhythm improvement is the first positive sign we’ve had since she was admitted to the ICU.

Lessons Learned

My mom had been putting off the hernia repair surgery, and things wouldn’t have gone sideways this far if that had already been done. If you or someone you know have been putting hernia repair off, please show them this.

Originally published at deirdre.net. You can comment here or there.

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vintage poster encouraging polio vaccination for children

I’m going to talk about vaccinations from the point of view of a person who’s older than most of the current vaccines, and what the changes have been like in my life.

My Age, In Practical Terms

If you read up on all of those, a handful of vaccination shots mean we miss the opportunity to suffer a whole lot of misery, and a bunch of truly smart and amazing people have been working hard ensuring that you, me, and that other person over there have the best chances at health possible.

I still remember spending a week absolutely miserable with chicken pox. A few years ago, I had a reoccurrence in the form of shingles. I wouldn’t wish that on anyone.

One of My Earliest Childhood Memories

I remember going to CalTech’s park areas where I got my Salk vaccination for polio around about 1963. I was three or four years old.

You don’t see a lot of people with polio any more, for two good reasons: 1) thanks to Salk, it was eradicated in 1968, 2) the people who did have visible polio symptoms are less numerous as a percentage of the population.

Polio’s a horrific disease that not only killed and crippled people in droves, it has the unfortunate habit of cropping up again decades later. It was not uncommon to see people limping with canes or crutches due to polio back when I was a kid. (Granted, it was also not uncommon to see people limping with canes or crutches due to injuries in WW2, the Korean War, or Vietnam. Or even WW1.)

I Hated Shots As a Child

Despite being a child of scientists, I absolutely hated getting shots. They terrified me.

I remember hiding under my doctor’s desk in his office, and there were many tears associated with getting shots. But you know what? My parents had not only my best interests at heart, but those of the rest of society, too. Apart from fear, there was no good reason not to get my vaccinations.

When I was in early adulthood, it changed. I was okay getting shots if I saw the shot. Now I can look or not look, it doesn’t bother me either way, because I know the purpose of a shot is to kick the ass of something.

I’ve generally stayed on top of my boosters since then.

Have There Been Problems?

There is in fact a rather horrifying article about the Salk vaccine and SV40 over on SFGate.

Some of the early attempts at vaccines were like trying to tune a car engine with a plastic fork. There wasn’t any real way to ensure non-contamination until we got modern tools for sequencing, replicating, and analyzing DNA.

Penn and Teller on Vaccinations

Short but to the point, this is an awesome pro-vaccination video that neatly addresses the “vaccines cause autism” hype.

Vaccination Schedules

Here is a list of vaccination schedules by country.

Note that there are vaccines other than the flu vaccine that you should get, or get a booster of, as an adult.

If it’s helpful, the CDC has some tips on keeping (and locating) adult vaccination records.

Originally published at deirdre.net. You can comment here or there.

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nQZcA7PRTyuduZPSZQ88_wanderlust-sm2
Bree was an Ellora’s Cave editor for twelve years before being laid off (along with all other freelance editors) in August.

Here’s a quote from the fundraiser:

It’s no secret that the EC editors’ unexpected layoffs on Aug.18 have adversely affected editors’ finances. In the case of one of our colleagues, Bree, her 12-year full-time loyalty to EC has severely compromised her income and she is on the verge of homelessness. She is diligently searching for work and we can’t bear to see her sink while she’s doing so. Please help if you can. Any amount, no matter how small, is welcome.

Here’s the fundraiser link. (Gofundme.)

If you don’t like Gofundme and prefer to contribute another way, email me (my email’s at the bottom of every deirdre.net page).

Also, Bree’s available for editing work. I can forward requests via email.

Please share this if you’re so inclined.

Thank you.

Originally published at deirdre.net. You can comment here or there.

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In Summer 1995, I picked up a book in a bookstore in Keene, New Hampshire where I worked before heading home for the weekend.

I was enticed by the Stephen King blurb.

I lived nearly 180 miles north in North Troy, Vermont.

Now, I didn’t always start books right away, but this one I was really looking forward to. In its own weird way, it changed the course of my life. Two years later, I’d be working as an immunology software engineer, though I ultimately decided not to pursue the additional degree(s) needed for more work in that particular field.

The blurb?

“The first chapter of The Hot Zone is one of the most horrifying things I’ve read in my whole life—and then it gets worse. That’s what I keep marveling over: it keeps getting worse. What a remarkable piece of work.” —Stephen King

Richard, then my partner and later my husband (not to be confused with Rick, my husband of 14 years) marveled that I was able to read the book in bed, turn off the light, and go to sleep. And stay asleep.

It’s not that I didn’t find the book terrifying. I did. It’s just that, for me, those horrors were so much worse than what I’d imagined, my own fears began to subside.

Before reading The Hot Zone, The Coming Plague, A Dancing Matrix, and other related works, I was always very fearful and squeamish about things medical. I was the kid who ran and hid under the doctor’s desk when it was time to get a shot.

I couldn’t watch a surgery scene on TV or in a movie. Just couldn’t.

After Richard died, I found myself watching a show about organ transplantation, showing transplant surgery, less than a week after I’d donated his organs. My neighbor wanted to make sure I was really okay with it. I was, which surprised me. I still avoid surgery scenes in movies and TV, but I’m not as horrified by them as I used to be.

I’d taken astronomy and geology rather than biology so I wouldn’t have to dissect anything. In Vermont, I finally took biology and the only things they made us dissect that first term were black flies. I hated them so much by that point (nasty, painful welts from bites if you didn’t know), I looked forward to stabbing them.

Eventually, I realized it would be a really long time before I could get through a Ph.D. or an M.D./Ph.D. program, so I decided to focus on the Master’s degrees I wanted.

But still, that book changed the course of my life.

Originally published at deirdre.net. You can comment here or there.

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Photo Credit: CDC / Dr. Frederick A. Murphy, color and border mine

Photo Credit: CDC / Dr. Frederick A. Murphy, color and border mine


For those who aren’t following along, Axl Goode and Taylor Cole are cover models and authors for Ellora’s Cave and strippers as their other job.

Axl reports on facebook:

UPDATE: After writing this entry I was—finally—issued a mandatory quarantine by the Texas Department of State Health Services.

That update was about two hours ago.

Their Gofundme fundraiser

Can be found here.

Photos of the Guys

I just realized I haven’t posted photos of them apart from a couple group shots and a blurry one.

Taylor (left), Kathy Wright Johnson, and Axl:

Taylor_and_Axl

Axl on the Silks:

axl-on-silks

And Taylor:

taylor

So, there ya go.

Originally published at deirdre.net. You can comment here or there.

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Photo Credit: CDC / Dr. Frederick A. Murphy, color and border mine

Photo Credit: CDC / Dr. Frederick A. Murphy, color and border mine


Say you’re a nurse taking temperatures for a guy who’s been potentially exposed to ebola and is quarantined at home.

You’d expect that there would be at least minimal safety precautions, right?

Taylor reports:

Taylor Cole questioned the health protocol of the nurse who visits him. “She didn’t have gloves on.”

::facepalm::

If you’re not supposed to be within three feet of other people, as Taylor and Axl were advised, gloves seem sensible precautions. Every nurse knows how to remove gloves so they don’t contaminate their hands.

I get that it’s very unlikely that Taylor and Axl have ebola, and some people may feel they’re taking precautions to extremes.

I view it this way: they don’t want to spread it if they have it and they’re ensuring that they can’t.

The nurse, on the other hand…. When I went to the ER, the nurse didn’t use gloves to take my temperature, but my risk profile was different.

True, I didn’t happen to mention having been jumped on by wild Gibraltar Barbary macaques 17 days earlier. (Ebola Reston involved macaques.) None of the Gibraltar macaques were known to be infected, nor had I traveled to Africa. Just to one of the closest points in Europe.

Also, the nurse did use gloves any time direct touch of my skin was involved, e.g., when inserting an IV, when giving me pain meds, etc.

Here’s a Great Post

Axl’s Oct 16 update.

When asked about who he blamed, he wrote a long post. Here are two quotes:

So in the end, no one is to blame. We can only take responsibility. I for one want to take responsibility for what has happened. Every single passenger that boarded flight 1143 played a part in that moment taking place. Now we get to play our part in trying to minimize the repercussions of possibly being infected. [...]

As communities, this is the best thing we can do. Rather than fighting a problem, we’re finding a solution. I can only encourage others to do the same. If we as a people weren’t so concerned with blame and held solutions as a higher priority our politicians might hold those same priorities. Rather than worrying about covering their backs, they would be looking to create a better future for all.

Dr. Jen Gunter’s Post

This is a good post.…but it does overlook a few points.

  1. Mr. Duncan’s family was very used to living under the “ebola rules”—no touching, no getting close to people.
  2. We don’t know that no one else got ill because Mr. Duncan was sick. We do know no one else in the US did that we don’t know about, given the small number of cases here.
  3. We do know that people who treated him during the first hospital visit (when the hospital was doing, as Rick put it, “wallet triage”), didn’t fall ill.
  4. 21 days is not an absolute number. Paper detailing quarantine periods for ebola. 95% of people who got ebola were symptomatic within 21 days of exposure. I haven’t read the paper to see the breakdown of the other 5%, but I suspect some of it may simply be there wasn’t a known date or time of transmission because they couldn’t trace it back.
  5. The widely-spread story about Mr. Duncan carrying a pregnant woman is false according to Duncan’s nephew:

    Among the most offensive errors in the media during my uncle’s illness are the accusations that he knew he was exposed to Ebola; that is just not true. He lived in a careful manner, as he understood the dangers of living in Liberia amid this outbreak. He limited guests in his home; he did not share drinking cups or eating utensils.

    And while the stories of my uncle helping a pregnant woman with Ebola are courageous, Thomas Eric personally told me that never happened. Like hundreds of thousands of West Africans, carefully avoiding Ebola was part of my uncle’s daily life.
    And I can tell you with 100 percent certainty: Thomas Eric would have never knowingly exposed anyone to this illness.

So, without that narrative, we really don’t know how Mr. Duncan was exposed or what happened. We’ve all lived with the comfort that that can’t be us because we “know” what happened.

Dr. Gunter’s right: ebola’s not easy to catch. However, were I in Axl and Taylor’s position, I think I’d be as careful as they are.

Originally published at deirdre.net. You can comment here or there.

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Taylor and Axl on the silks

Taylor and Axl on the silks


I’ve posted about this on Twitter, but I only amended my Romanticon post to include word of the quarantine.

However, given the fundraiser I just discovered, I’m copying the amendment into this post so it gets more attention and adding the fundraising link below.

Frankly, no one who goes to to any convention should have to fear coming down with something as horrific as ebola.

First: Quarantine, the Origins Of

Quarantine comes from the Italian word quarantq, meaning 40: the number of days you had to wait before your ship could enter Venice. It was used to prevent spread of the plague. It didn’t work so well back then, mostly because disease transmission was so poorly understood, so that’s why all the gondolas in Venice are painted black.

Jaid’s Message and Axl’s Message

Jaid Black posted a notice about potential exposure to ebola. Dallas nurse Amber Vinson, who now is confirmed to have ebola, was in Akron during the same time period that Romanticon was held.

According to news reports, the infected woman, a healthcare worker who treated “Patient Zero,” was in Akron visiting family. She did not show signs of infection until already in Akron. The CDC has confirmed that she was definitely symptomatic while traveling from Cleveland to Dallas on October 13 so if you know anyone else on that flight please have them contact the CDC IMMEDIATELY.

Romanticon attendees (other than those on flight 1143) have nothing to worry about… according to the CDC. As they haven’t exactly been forthcoming with information, and we have no idea where in Akron this woman was, I am asking EC employees and Romanticon attendees in general, to self-monitor their health for the next 3 weeks. A list of symptoms can be found here: http://www.cdc.gov/vhf/ebola/symptoms/

Further, two of the Cavemen, Axl and Taylor (who are also both EC authors), were on the same flight as Vinson. After consulting with the CDC, they are both in self-imposed quarantine for 21 days.

Here’s Axl’s story.

Axl and Taylor appear briefly on this GMA segment speaking about their self-quarantine.

My hope is that everyone will be fine, but I’m sure thoughts and prayers are welcome. Axl gives his contact information in his facebook post if you wish to reach out to him.

Facebook links: Axl Goode and Taylor Cole takeitoff

The GoFundMe

Can be found here.

What we do know:

  1. They were apparently sitting very close to nurse Vinson on the same flight. (See Daily Mail link below for pics.)
  2. They feel it is in the safety of all concerned if they are conservative and self-quarantine. I applaud this, but it’s not cheap. (As to whether or not I’d contribute, the question is rhetorical, sadly.)
  3. Unlike some of us, they don’t have the sort of job where they can work from home.

I think the Daily Mail really has the winning caption here: Ebola Strippers. That’s not a disease vector I’d ever want to have happen.

If you’re inclined to either contribute or spread the word, please do so.

I know there are reasons to not support GoFundMe because of their policies; I’m sure if you contact Axl there are other means to help if that’s an issue for you.

My Own Experience With Quarantining

When I was at Apple, I came down with shingles. One of my colleagues was pregnant, and as shingles/varicella is of particular risk to the unborn, I was asked to work from home until it cleared up.

Now, shingles is not particularly contagious. Truly. When kids have chicken pox, it’s the way kids interact with the world more than the contagiousness that’s the problem.

But I respected that, and worked from home for about a week. This meant I had to miss the Apple Worldwide Developer Conference that year. Again, it was best for all concerned that I did so.

However, I had a job where I could work at home. Not everyone is so fortunate.

Special Comment Policy for This Post

I’d rather not debate the merits of the fundraiser in the comments. Respectful questions are fine.

Originally published at deirdre.net. You can comment here or there.

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FreshDesignElements-7843_800
Well, it’s been just over a month since I did whatever the hell it was I did to my hip. I suspect transferring between boat and ship or somesuch.

I didn’t talk about my experience being injected with IV pain meds. They tried a non-naarcotic first and that made me hurt worse. It had a rolling effect where it would hurt less, and then it’d hurt more. When it hurt more, my pulse would race and set off the alarm, which just stressed me out further until I figured out what was going on. Then I’d just watch it.

I couldn’t sit still. I tried lying down, only I kept tossing side to side (they put the railings up, clever people). I tossed the blanket off three times because I was just that uncomfortable. Then I asked for a chair. Then the chair wasn’t comfortable. Then I tried to stand. No good. It was brutal.

The poor guy on my right came in for some heart-related thing and the woman on the other side of him was pregnant and far more vocal about her pain. I felt sad for him listening to both of us.

So the second time, they also gave me narcotics. As my doc said yesterday, “I can’t believe how much heavy narcotics they gave you.” I can. Made me woozy, but didn’t knock me flat. It reduced my pain from about 8-9.5 (depending) down to 7-8.5. Progress.

The Fibromyalgia and Myofasical Problems

One of the complicating factors any time I hurt is this: how much of it is real pain vs. how much of what I’m experiencing is altered pain perception because of fibromyalgia or myofascial pain.

For example, if I reach up and run my fingers through my hair and that hurts, that’s fibromyalgia. If I reach up and run my fingers through my hair and it doesn’t, no fibro. That’s a really clear-cut case.

A myo example: once, Rick reached out to touch my upper arm. It sent shooting pains down my arm and I flinched. That’s myofascial pain. If it had continued after the touching stopped, it could also be partly fibro pain (since I have both).

Bringing this back to the hip issue: given the nature of the hip:

  1. Some pressure is probably always, or almost always, on muscles that may have myofascial pain issues,
  2. It’s impossible to tell, at any given time, what percentage of the pain I’m experiencing is fibro-related. Or myo-related.

One thing I do know, though: if I’m sleeping very well, I’m in a lot less pain. I haven’t been sleeping well for a month. Most nights I get a single stretch of 4-6 hours, and that’s pretty much it. I need 8.

The Post-ER Doctor Visit

I had my post-ER doctor visit yesterday.

So my doctor’s like, well, this isn’t really getting better, we need a new approach. I convinced her that probably the best approach was doubling the opioids (tramadol aka Ultram) that work well for my fibro & myo, and halving the opiates (norco) that don’t. Point of clarification here: for me, opiates will mask fibro pain, but they don’t break the flare cycle. But opioids actually break the flare cycle. For me, nothing else has except good sleep (and tricyclics help with that, but haven’t been helping lately).

Right now, I really have zero idea how much of what I’m experiencing is fibro, myo, or neither. It’s probably some evil combination that we just haven’t thrown the right med combination at to get anywhere. (Assuming we don’t have to resort to MRI/CT scan to find some other cause entirely. I’m hoping that’s not the case.)

The opiods also last longer (though not 12 hours, sadly, no matter what the docs say) and maybe I’ll have a chance of sleeping through the night. That didn’t work last night, but we’ll see how it goes.

Catch is, I feel a bit more fragile on the opioids. So I felt well enough to try to cook something. Only that had me shaking and ready to collapse in a heap on the floor.

Two steps forward, one step back. If I can manage enough steps, I think I’l get there.

Originally published at deirdre.net. You can comment here or there.

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I’ve been hearing about the freezing eggs benefit, which has made the news, but I’ve never heard news break about the Stanford Health Navigator benefit that Apple offers.

  • Worldwide
  • To its employees
  • For immediate family
  • Even if they’re not covered by Apple insurance

Medical Referral Anywhere in the World

Need some edge case treatment not available locally? Want to go for some treatment elsewhere?

They’ll refer you.

Navigators can also assist with scheduling appointments and coordinating specialist visits at Stanford Hospitals and Clinics and its affiliated network of leading healthcare institutions around the world, including the Mayo Clinic, Massachusetts General, and select institutions in Asia, Europe and Latin America.

Medical Librarian Research

Want research on a medical topic to make better decisions or take it to your doctor? Give them a call and they’ll prep it for you.

No request is too large for our staff to address or too small for you to mention. Whatever you need, we will respond as quickly as we can. We are committed to providing you with the highest quality customer service.

NVIDIA also has the same program. (There were several corporations that donated big bucks to Stanford, I believe 6 corporations in all.)

Originally published at deirdre.net. You can comment here or there.

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There are few things quite so grueling as having a part of you that hurts a ton go through medical imaging. So far, been there, done that with a wrist, an ankle, a knee, and now a hip.

My x-ray last night led to me collapsing into a sobbing pile. This was after the first round of IV pain meds. The x-ray tech thought it was just not gonna happen, not knowing exactly how stubborn I was. She and I talked briefly about what we could do that would both get a good clean image and make it hurt less for me. A bolster that supported my leg a few inches worked wonders.

Short version: I didn’t break my ass, but I apparently did sprain it.

I also have developed some arthritis in that hip since my last imaging three years ago. It’s not bad enough to explain the current issue, though.

I was given better pain meds and ushered out.

All told, I spent about six hours in the ER. Rick was wonderful and made an In & Out burger run. I managed to sleep five hours in a single session after getting home last night, so that’s better than the four hours the night before.

Probably I’ll just need to really really really keep off it for a few weeks. Sadly, this means no rowing this weekend. :(

Acupuncture has often helped manage my pain, so I have a session with my long-time acupuncturist later today.

Originally published at deirdre.net. You can comment here or there.

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I wasn’t able to sleep through the night, so I’m going to the ER. (I did manage to get a single spell of about 4 hours of sleep, but that was after 2 hours of tossing and turning to find a comfortable enough position where I could get to sleep. Every time I want to sleep, same thing.)

Because I have fibromyalgia, that means that I am now at risk for hurting worse for days than I was yesterday. Yesterday was the worst yet. Fibro’s kind of a weird feedback loop: your body thinks sensation should hurt rather than be neutral or pleasant.

As an example, Diamox, used to prevent altitude sickness, can cause a shimmery sensation across the skin. My body interprets that as pain. :( That’s not normal, though.

Restorative sleep (stages 3 and 4) returns the body’s pain levels (and sensation interpretations) to more normal levels. Most of my restorative sleep comes at the end of my sleep cycle.

The pain levels get more normal during the restorative sleep cycle, but I only get that at the end of a night’s sleep.

So sleeping through the night undisturbed is key, and I haven’t been getting that consistently. Given my pain levels yesterday, it was absolutely necessary to get the pain under control so the sleep cycle returns to normal.

I also have myofascial pain, which means that trigger points (inflamed nodules where nerves enter muscles) send shooting pain down muscle bundles.

I’ve had a lot of general (fibro) pain and specific (myo) pain and a lot of whimpering nerves. I honestly cannot tell where the pain is coming from, and that’s with some significant amount of education on the subject (I just went through a chronic pain management program earlier this year).

Normally, I wouldn’t go to the ER unless my pain were actually a 10. For me, that’s nausea, vomiting, uncontrolled crying, etc.

A 9 includes inability to get to sleep or stay asleep, which is where I was yesterday, and frankly I’ve been at a long-term 8 or 9 for three weeks. (Note: these are my definitions of pain levels for me. A lot of people use 10 to mean something less.)

So I’m going to the ER, where they can take specialized measures to make me feel better.

Originally published at deirdre.net. You can comment here or there.

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Backing into Bonifacio, Corsica

Backing into Bonifacio, Corsica


I’ve been in excruciating pain for the last couple of weeks.

It started innocently enough: I got an awesome Thai massage, which loosened everything up.

Loosened everything up enough that I managed to later torque some muscle in my hip, a rather critical muscle/muscles for balance. This was bad the day we were in Sardinia, meaning I wasn’t able to see the rather awesome caves there.

Walking was excruciating. Climbing up and down stairs was excruciating. Rolling over in bed was excruciating.

The last meant I wasn’t sleeping, so I had a persistent fibromyalgia flare on top of everything.

We’d picked this cruise because I’ve always wanted to see Corsica, and one of the places I wanted to see was Bonifacio. The photo above is one of the last pics I managed to take. We were up early that morning (and I’d climbed the stairs to the Top of the Yacht bar) to see the sailing into port. Bonifacio’s kind of weird: all the ships have to back in, hence we went in flag first. (The odd flag is actually two flags: Bahamas, for the ship’s registry, and Norway, for the Captain’s nationality.)

I got off the ship, only to discover that I really couldn’t walk more than 100 feet without breaking into tears from the pain. Given that, I declined to go on the day tour I’d hoped to see. Instead, I hobbled down to see the shops, literally going from bench to bench. I spent the rest of day in bed.

The next day, we were using tenders, so I never got off the ship. Rick says I didn’t miss much, but it looked to me rather like an awesome place we went in Costa Rica—kind of a small beachy place with a small town, but not too much. I love those places.

I don’t need to say how much of an idiot I was for trying to go through all the Vatican museums, but I lasted through two hours of that idiocy. We had a nice hotel in Rome near the Vatican. Except for the slow waitstaff and the three steps up and down to get from one side of the building to the other, I really liked the place.

Had enough emergency meds to last through today, but I’m not better enough to function without more than my usual, so I’m going to the doctor.

I’m still really bummed about missing what I wanted to see in Corsica, and about not being able to see St. Peter’s Basilica.

Originally published at deirdre.net. You can comment here or there.

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Wheat field, photo by Viktor Hanacek.

Wheat field, photo by Viktor Hanacek.

Over the last two months, half a dozen people that I’d spoken with for about fifteen minutes total decided to recommend a book to me: Wheat Belly. They recommended it for two reasons, I’m sure: one, they each knew I was celiac or on a gluten-free diet. Two, they knew I was fat.

The first time someone mentioned it, I downloaded and skimmed the sample of the book. To me, it looked like the typical diet book, full of pseudoscientific claims in addition to some genuine ones.

On Recommending This Book to a Celicac

Here’s what I’ve wanted to say to everyone who’s recommended this book to a celiac:

Dude.

Do you think a celiac, of all people, has no clue how dangerous wheat can be?

Did you know that my intestines bleed when I accidentally eat a sandwich made with regular bread? That a smaller dose can land me in bed with three days of diarrhea and misery? Or that about half a crouton’s worth can cause me to run a fever for a couple of days? That my thyroid’s mostly shut down (a common co-morbidity) and is now sixteen times normal size? That my supposed “wheat belly” is actually a medication and thyroid side effect?

Did you know that I know people who’ve needed 16 to 26 units of blood (over a course of one to two years) after their diagnosis? That I know people who’ve wound up in the ICU because of celiac-induced anemia?

That I know people who were losing so much weight they could have died?

That I know someone who was being evaluated for a heart transplant before they figured out she had a wheat allergy? (Not celiac, a true allergy.)

Did you know that I have met people who get seizures from small amounts of wheat?

It dissolves our intestines. How much worse could it be, really? I don’t really know of any other analogous food issue.

On Recommending it as a Diet Book

Look, there are some things I agree with: less sugar, more traditional foods, there are good fats. Except, of course, this diet cuts out swaths of foods that aren’t bad for you. Buckwheat, to take an example, isn’t a grain, and is one of the best vegetarian complete proteins. Why limit it?

But I’m not open to villifying wheat for the 95% of you for whom it does no apparent damage. I do sincerely thank all of you gluten free people for making more food options available to me, but I’ve always stated: if it doesn’t make you feel better or doesn’t improve your medical numbers, I’m not convinced it’s worth the bother.

I’m not convinced that the increase in celiac disease expression is related to eating newer forms of wheat, as claimed in the book. If that increase is related to a single food, it may also be corn or soy. Or, you know, the shift from butter to margarine around WWII. It could be canola oil. It could be that we’re no longer eating much liver. Or lamb. It could be a different answer for different populations.

Other people have done takedowns of the book.

The Only Diet Advice I’ve Ever Heard That’s Worth Following

The first is from Michael Pollan:

Eat food.
Not too much.
Mostly plants.

The second is one I heard from a friend who’s Japanese, though I’ve never heard it from another Japanese person:

Thirty different foods a day.
One hundred different foods a week.

No, I don’t mean ingredients. I mean foods. Spices count.

It’s an interesting goal.

But avoiding buckwheat, which isn’t a grain, because industrial wheat may be bad for you? That’s crazy talk.

Also, because I apparently have to say this: recommending a diet book to a fat person you have just met and barely know is a dick move.

Originally published at deirdre.net. You can comment here or there.

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Robin Williams died, apparently of suicide. He’d been through a recent rehab program; he struggled with both addiction and depression.

For many years, I didn’t realize I struggled with depression. When I became involved in Scientology, the depression got worse, and the costs of admitting I had it rose. I left Scientology in 1989, but I didn’t seek help for my depression until 1997. To ask for “psych drugs” or traditional therapy was counter to all my programming.

At that point, I’d been widowed for a few months. I wasn’t suffering any obvious big-picture depression problems. I cried occasionally, but didn’t go on long crying jags.

I was waiting for my doctor, and read an article about depression. I had many of the secondary problems of depression: total inability to sleep at night (which has plagued me intermittently ever since) being the biggest one. As a secondary effect, my fibromyalgia raged on with the sleep irregularities and never went away.

My doctor prescribed me two antidepressants, one of which was amitriptyline. To this day, I’m still on nortriptyline to help regulate sleep (and thus pain), though I no longer feel depressed. Unless, of course, I go off of it, as I did for a few months. Big mistake.

My doctor told me that when he’d tell depressed people what drugs and/or therapy could do for them, they’d look at him like he was a Martian. My own example: I’d become convinced I’d never write again. It was too painful and too wrapped up in the identities both I and my late husband had.

I started to feel the emotional lift from one of the meds in a few days, and within two weeks I was starting to write again. Medication turned my life around and made it worth living again; I’m unhappy when I can’t write.

I’m thankful that I’ve only been suicidal during one very short period of my life, before my first marriage. I’ve known other people who’ve killed themselves (I tell one such story here), and I always feel sad for them and the people left behind.

Susan, I’m so sorry you lost your husband Robin.

If you’re reading this and struggling with depression: there are sources of help. What worked for me may not work for you, but please try to find something that helps, even if it doesn’t seem immediately effective.

Originally published at deirdre.net. You can comment here or there.

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