#(he only ever refers to an allergy and not celiacs which is why I think he just. Doesn't. Know???) Anyways I'm Fucking mad

[trans-leek-cookie]

I'm going to burn my house down

[awheckery]

so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

[celiacandsalty]

Kal Penn’s Nuts

Warning: the following blog includes strong language, references to gluten, and excessive whining.

When my brother Jeff got diagnosed with Celiac disease in 2014 (at age 34) I distinctly remember my first thought being something along the lines of, “oh god, that poor bastard.” Not only because many most of the best foods contain gluten, but because I was already imagining the inevitable day when he goes to some business dinner or something and the server mistakes him for one of THOSE people. You know, the people we all roll our eyes at because they claim to have a gluten “sensitivity” or “intolerance,” but we suspect they’re full of shit and make a mental note to mock them at a later date. It’s hard to say why I cared so much about what hypothetical Cheesecake Factory employees in Ohio might think about my brother’s diet but I DID.

(I don’t know if you’ve noticed, but on TV shows now if they want to quickly convey that a character is an annoying douchebag, usually all they have to do is throw in a line where that person orders a gluten free whatever and a vegan something or other. It’s been a “joke” (for lack of a better word) for at least a decade now and for some reason shows no signs of stopping, despite the fact that it is completely unoriginal, unfunny, and hacky. What I’m saying is, gluten free is the new Nickleback.)

Okay, now cut to 2018 when I, following in my brother’s stupid footsteps, also get diagnosed with Celiac disease1 and all those pitying thoughts I never would have verbalized to my poor bastard brother come flooding back, only now they apply to me too and I can hear them all because they’re in my head. I did not take the news well.

Now, it almost goes without saying that it is easier now than ever before to find decent gluten-free food, especially in Portland, Oregon (where I fortunately already happened to live), but I gotta say, it’s a colossal pain in the ass and it still sucks. It sucks that I have to spend so much of my free-time moonlighting as a gluten detective, looking at menus for places I might possibly be invited to eat at someday and reading every word on every food label and trying to get to the bottom of whether miso paste or Werther’s Originals are safe for me to eat.2 It sucks that I don’t even really WANT to go out to eat much anymore because it’s such a stressful experience that I barely enjoy it anways. It sucks that I once enjoyed traveling and now I’ve pretty much written off at least a couple of entire continents (and they were good ones too.) It sucks that I have frequent anxiety dreams about accidentally poisoning myself. It sucks that I only just discovered Shake Shack 6 months before getting diagnosed and now I’ll never again know the joy of a squishy hamburger bun. It sucks that I no longer get to be the easygoing person in a group or at the office who, when asked about dietary restrictions, could proudly say “Nope! I’m fine with whatever (aka I am a very cool and chill person).” I could go on and on, but I’d have to say the thing that actually sucks the most is the whole gluten-as-a-punchline thing because for me it is so terribly unfunny.

A couple of months ago3 I was at the gym, listening to one of my podcasts in which the guests, usually comedians, get a chance to rant for a few minutes on any topic of their choosing. That week, Kal Penn (of Harold & Kumar fame4) was one of the guests and he made the bold choice to rant about GLUTEN. My blood went straight to a solid simmer before he said another word. I considered shutting it off, but I thought to myself, “Easy does it, Jeanne! Maybe it’s not going to be what you think it is.”

Narrator: It was.

Kal Penn went on to say that as a person living with a severe allergy to tree nuts, it makes him very angry that people who claim to have GLUTEN allergies or intolerances are diluting the seriousness of his legitimate food allergy. The main takeaway being that GLUTEN allergies are FAKE and a FAD and they’re a PREFERENCE, unlike Kal Penn’s very real allergy to nuts.

Of course, Kal Penn included the caveat that there is a VERY small percentage of people for whom gluten issues are real, but I feel like that finer point may have been lost in the message of screaming FAKE FAKE FAKE for 3 minutes.5

The annoying thing though, is that Kal Penn is right. It IS a fad. (Especially in LA.) And I HATE that it is. One particularly annoying thing about this is that restaurants are catching on and more and more GF items items are popping up on menus everywhere. Unfortunately, they are often actually GF, unless you have Celiac disease, which makes my gluten detective job much harder.6

Now I don’t doubt that living with a nut allergy is hard. And I imagine that Kal Penn and I actually have a lot in common when it comes to anxieties and frustrations around food and eating out. I know that I shouldn’t say that I’m jealous of Kal Penn and his nut allergy, but in a way I am. Yes, I’m sure it is terrifying to go into anaphylactic shock and have to be rushed to the hospital, but on the bright side, at least people don’t think you’re a douchebag liar!

Speaking of being rushed to the hospital, here’s the funny story about how I found out that I can’t eat gluten. A little over a year ago, I ended up in the emergency room after dramatically collapsing in my apartment and completely losing all feeling in the entire left side of my body. After getting an MRI (and some other very expensive tests), I was informed that there were several areas of stroke in my 34-year-old brain.7

I spent 3 days in the neurology unit with puzzled doctors coming in every hour to scratch their heads and look at me with great concern. I didn’t find out for another full week that all of this was a result of undiagnosed Celiac disease. Apparently though I was asymptomatic in terms of gastrointestinal issues (very common in adults), I had become so severely anemic8 that I literally almost died. Malnutrition and malabsorption are common symptoms of Celiac, and at this point my hemoglobin was so critically low that I required a blood transfusion and 2 IV iron infusions.

Ok, so cool story, I know, but is stroke and near-death a common effect of eating gluten? Nope! I don’t think so!

So what’s my point? Fuck, I don’t even remember now. But I guess what I’m saying is...we all know the people Kal Penn is talking about. And I spend way too much of my mental energy worrying that when I tell someone I can’t have gluten9, they might, for example, still serve me a salad that they accidentally put the croutons on and then tried to pick them off but missed a few because they probably assume I’m just another asshole doing the Whole 30.10  

So, Kal Penn, believe me when I say that I am with you on the issue of THOSE people. But continuing to rail against them and their possibly exaggerated gluten sensitivities does nothing to stop them. (I suspect it might even make them stronger and more annoying.) It does however, continue to reinforce the already widespread belief that gluten is a made-up problem invented in the 2000s, by I don’t know, naturopaths and George Soros probably? And it’s this belief that is actually very dangerous to people like myself and my brother and the millions of other poor bastards with REAL incurable conditions, and, for what it’s worth, one that seems unlikely to change the way we treat someone with a nut allergy. And, last but not least, it is also a belief that occasionally ruins my workout/enjoyment of podcasts.

Anyways, thanks for letting me vent.

Oh, but sorry about your nuts, Kal Penn.

----

Cool family, right?? (Also my maternal grandmother had it too and was diagnosed in the 1980s.)

Still unclear

I meant to write this sooner. Fortunately, my New Year’s Resolution was to hold on longer to more grudges.

Among other things, like Obama’s White House?

I was also going to go back and listen to the podcast again to more accurately transcribe his rant, but just thinking about it made my heart hurt. If you want to hear for yourself, it was the November 9, 2019 episode of Lovett Or Leave It.)

Plus the pay sucks.

I think it could still pass for 28.

My blood’s solution to this problem was to produce WAY too many platelets, which I didn’t know and perhaps my blood didn’t know, are what make blood clot.

“Just tell them you have CELIAC.” Well guess what–some of THOSE people are co-opting our magic word too now!

Sorry if you’re doing the Whole 30 and not an asshole.