![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Spoiler: For the first time in two years, I have good news!
I hesitated over how to write this, partly out of superstition (if I say I’m better, I will immediately relapse) and partly because I wasn’t sure how many details to give (no matter how much I say I don’t want advice, if I give any details whatsoever, I get advice).
So please: NO ADVICE. If you find yourself writing, “I know you said you don’t want advice, but I just couldn’t live with myself if I didn’t advise you to…” delete the goddamn message. I have gotten hundreds of them, and 100% are 100% useless. Unless I’ve asked you for your advice, I DON’T WANT ADVICE.
As some of you know, since July 2015 I’ve had a horrific mystery illness that made it extremely difficult and often impossible to work, have fun, socialize, enjoy life, or do any normal life activities. I lost more than a quarter of my bodyweight, could barely leave my apartment, and looked like I’d just gotten out of a POW camp. I started out thinking it would be cured at any moment, then thinking that it was permanent but treatable. By the end of the year I thought I was probably going to die. Then I hoped I was going to die.
I am not giving details to avoid advice, but I will say that while the illness was legitimately mysterious, it was not bizarre in any way. There was nothing about it that should have provoked the reaction it did from doctors, which was to call me a liar, say it was all in my head, and accuse me of being a drug addict. I don’t mean that they implied those things. They outright stated them. Here are some verbatim things doctors told me:
“You’re a liar and I want nothing to do with you.”
“You’re just looking for drugs.”
“There’s nothing I can do for you. See a psychiatrist.” [I got this and the variations below at least 30 times.]
“This is caused by anxiety.”
“This is caused by stress.”
“See a therapist.” [I was already seeing a therapist.]
“Your story doesn’t add up.”
“I don’t believe you.”
“You’re not underweight. Your BMI is normal.” [I got this multiple times when I said that I’d lost over a quarter of my body weight. This shows the problem with using the BMI as if it's some kind of Word of God, with zero reference to the individual patient. In my case, I am on the muscular side and so I could lose that much and still squeak into a "normal" range if you don't consider any fucking context whatsoever.]
“My diagnosis is based on the fact that you’re female and in your forties, and this illness is common in people in that demographic.” [I got this at least three times, from doctors who presented a diagnosis after I’d said about two sentences about my symptoms, in response to me asking what the diagnosis was based on. You cannot, in fact, diagnose based solely on demographics.]
“No, I’m not going to treat you. No one can treat you without a diagnosis. There’s an 80% chance you’ll never be diagnosed in your lifetime.”
“Maybe you thought you were happy, but you were in denial of some deep emotional issues.” [This was a surgeon who had met me for the first time five minutes ago. Five minutes later, he told me that he was involved in a love triangle and advised me to study the Kabbalah with Madonna’s rabbi. He was one of the more amusing of the terrible doctors I encountered, but was otherwise typical in his unprofessionalism and total lack of helpfulness.]
“There’s nothing wrong with you other than that you’re worrying about being sick. See a psychiatrist.”
I did see a psychiatrist. He said that anyone in my situation would be anxious and depressed, and that it would be abnormal if I wasn’t, and advised me to see a good diagnostician. (They do not appear to exist in the US.)
In short, hysteria is alive and well as a diagnosis in modern America. I had both good insurance and plenty of savings to spend on medical expenses, and my medical “care” was still absolutely abysmal. I am not at all surprised by America’s wretched statistics on health. My only surprise is that I thought that was due to poverty, lack of good medical care for poor and uninsured or underinsured people, and racism. It turns out that it is additionally caused by sexism and the prevalence of absolutely terrible doctors.
I spent 50% of my total income – out of pocket – on medical expenses last year. Nearly all of it was completely useless, and two-thirds was literally me paying to be verbally and emotionally abused.
In the meantime, I was deluged with useless, obnoxious advice from people who did want to help me, but were unwilling to do what I told them would be helpful (that would be anything but giving me medical advice.) I got advised to jump on a trampoline, pray to gods I don’t believe in, take about a billion different supplements, eat nothing but bone broth, not eat anything heated in a microwave, go on every bizarre diet in existence, (all of this when they knew I was drastically underweight), and see a quack doctor in Mexico who treats AIDS by shoving magnets up your ass. (Fucking magnets, how do they work? Cancer in its malignant form is caused by the infection with the leprosy bacteria. By placing magnets that eliminate the pathogens, Dr. Goiz claims that cancers should resolve by themselves.) I am not making any of this up.
However, I also had people who were actually helpful. This is a long story which I may tell at some point, but with a little help from my friends—okay, a lot of help—I travelled to Bulgaria where I stayed with Egelantier and had tests and surgery performed, gave the results to several other friends who did research for me, obtained medication in shall we say various ways, and had another friend impersonate my fiancee. (Yes. There was fake dating.)
As a result, I am now feeling much better, am working and eating and exercising again, and most importantly, am actually enjoying life again. Photo proof!
The price of this is a medication which costs $100/week and is not covered by insurance. However, since I can now write again and so make money again, I should be able to keep taking it indefinitely. Mildred of Midgard found it by researching medical journals—only part of literally hundreds of hours of research she did on my behalf—and probably deserves another doctorate for it. I don't want to give the actual probable diagnosis because of the advice issue, so I'll just say that it's a physical, non-psychological, non-psychosomatic illness which was not caused or affected by any psychological issue whatsoever.
To everyone who helped me, whether in those concrete ways or just by respecting what I said about what would and would not be helpful, I am forever grateful.
Meanwhile, since I had no fun for the last two years and feel like I need a year-long vacation, I am going to Las Vegas this weekend! I haven’t gone in over ten years, but am certain that I will have much-needed fun and relaxation.
Once again: NO ADVICE. Unless it’s advice on what I should do in Las Vegas or do for fun in general. I don’t have any restrictions on diet or activities. Any unasked-for diet advice will be killed with fire. That’s “diet” as in “restrictive and/or supposedly healthy diet.” Advice on delicious things I ought to eat for enjoyment would be welcome.
Maybe later I will come up with something deep to say about the whole experience. Mostly I’m extremely angry at the medical system, individual doctors, and the toxic social beliefs which made an incredibly awful experience even worse by blaming me.
But for now, all I really have to say is that I didn’t think I’d live another year (and definitely hoped I wouldn’t), and now I’m hiking and seeing plays and going to Vegas.
So have a poem instead. It’s “The Moment,” by Patricia Hampl.
Standing by the parking-ramp elevator
a week ago, sunk, stupid with sadness.
Black slush puddled on the cement floor,
the place painted a killer-pastel
as in an asylum.
A numeral 1, big as a person,
was stenciled on the cinderblock:
Remember your level.
The toneless bell sounded:
Doors opened, nobody inside.
Then, who knows why, a rod of light
at the base of my skull flashed
to every outpost of my far-flung body—
I’ve got my life back.
It was nothing, just the present moment
occurring for the first time in months.
My head translated light,
my eyes spiked with tears.
The awful green walls, I could have stroked them.
The dirt, the moving cube I stepped into—
it was all beautiful,
everything that took me up
I hesitated over how to write this, partly out of superstition (if I say I’m better, I will immediately relapse) and partly because I wasn’t sure how many details to give (no matter how much I say I don’t want advice, if I give any details whatsoever, I get advice).
So please: NO ADVICE. If you find yourself writing, “I know you said you don’t want advice, but I just couldn’t live with myself if I didn’t advise you to…” delete the goddamn message. I have gotten hundreds of them, and 100% are 100% useless. Unless I’ve asked you for your advice, I DON’T WANT ADVICE.
As some of you know, since July 2015 I’ve had a horrific mystery illness that made it extremely difficult and often impossible to work, have fun, socialize, enjoy life, or do any normal life activities. I lost more than a quarter of my bodyweight, could barely leave my apartment, and looked like I’d just gotten out of a POW camp. I started out thinking it would be cured at any moment, then thinking that it was permanent but treatable. By the end of the year I thought I was probably going to die. Then I hoped I was going to die.
I am not giving details to avoid advice, but I will say that while the illness was legitimately mysterious, it was not bizarre in any way. There was nothing about it that should have provoked the reaction it did from doctors, which was to call me a liar, say it was all in my head, and accuse me of being a drug addict. I don’t mean that they implied those things. They outright stated them. Here are some verbatim things doctors told me:
“You’re a liar and I want nothing to do with you.”
“You’re just looking for drugs.”
“There’s nothing I can do for you. See a psychiatrist.” [I got this and the variations below at least 30 times.]
“This is caused by anxiety.”
“This is caused by stress.”
“See a therapist.” [I was already seeing a therapist.]
“Your story doesn’t add up.”
“I don’t believe you.”
“You’re not underweight. Your BMI is normal.” [I got this multiple times when I said that I’d lost over a quarter of my body weight. This shows the problem with using the BMI as if it's some kind of Word of God, with zero reference to the individual patient. In my case, I am on the muscular side and so I could lose that much and still squeak into a "normal" range if you don't consider any fucking context whatsoever.]
“My diagnosis is based on the fact that you’re female and in your forties, and this illness is common in people in that demographic.” [I got this at least three times, from doctors who presented a diagnosis after I’d said about two sentences about my symptoms, in response to me asking what the diagnosis was based on. You cannot, in fact, diagnose based solely on demographics.]
“No, I’m not going to treat you. No one can treat you without a diagnosis. There’s an 80% chance you’ll never be diagnosed in your lifetime.”
“Maybe you thought you were happy, but you were in denial of some deep emotional issues.” [This was a surgeon who had met me for the first time five minutes ago. Five minutes later, he told me that he was involved in a love triangle and advised me to study the Kabbalah with Madonna’s rabbi. He was one of the more amusing of the terrible doctors I encountered, but was otherwise typical in his unprofessionalism and total lack of helpfulness.]
“There’s nothing wrong with you other than that you’re worrying about being sick. See a psychiatrist.”
I did see a psychiatrist. He said that anyone in my situation would be anxious and depressed, and that it would be abnormal if I wasn’t, and advised me to see a good diagnostician. (They do not appear to exist in the US.)
In short, hysteria is alive and well as a diagnosis in modern America. I had both good insurance and plenty of savings to spend on medical expenses, and my medical “care” was still absolutely abysmal. I am not at all surprised by America’s wretched statistics on health. My only surprise is that I thought that was due to poverty, lack of good medical care for poor and uninsured or underinsured people, and racism. It turns out that it is additionally caused by sexism and the prevalence of absolutely terrible doctors.
I spent 50% of my total income – out of pocket – on medical expenses last year. Nearly all of it was completely useless, and two-thirds was literally me paying to be verbally and emotionally abused.
In the meantime, I was deluged with useless, obnoxious advice from people who did want to help me, but were unwilling to do what I told them would be helpful (that would be anything but giving me medical advice.) I got advised to jump on a trampoline, pray to gods I don’t believe in, take about a billion different supplements, eat nothing but bone broth, not eat anything heated in a microwave, go on every bizarre diet in existence, (all of this when they knew I was drastically underweight), and see a quack doctor in Mexico who treats AIDS by shoving magnets up your ass. (Fucking magnets, how do they work? Cancer in its malignant form is caused by the infection with the leprosy bacteria. By placing magnets that eliminate the pathogens, Dr. Goiz claims that cancers should resolve by themselves.) I am not making any of this up.
However, I also had people who were actually helpful. This is a long story which I may tell at some point, but with a little help from my friends—okay, a lot of help—I travelled to Bulgaria where I stayed with Egelantier and had tests and surgery performed, gave the results to several other friends who did research for me, obtained medication in shall we say various ways, and had another friend impersonate my fiancee. (Yes. There was fake dating.)
As a result, I am now feeling much better, am working and eating and exercising again, and most importantly, am actually enjoying life again. Photo proof!
The price of this is a medication which costs $100/week and is not covered by insurance. However, since I can now write again and so make money again, I should be able to keep taking it indefinitely. Mildred of Midgard found it by researching medical journals—only part of literally hundreds of hours of research she did on my behalf—and probably deserves another doctorate for it. I don't want to give the actual probable diagnosis because of the advice issue, so I'll just say that it's a physical, non-psychological, non-psychosomatic illness which was not caused or affected by any psychological issue whatsoever.
To everyone who helped me, whether in those concrete ways or just by respecting what I said about what would and would not be helpful, I am forever grateful.
Meanwhile, since I had no fun for the last two years and feel like I need a year-long vacation, I am going to Las Vegas this weekend! I haven’t gone in over ten years, but am certain that I will have much-needed fun and relaxation.
Once again: NO ADVICE. Unless it’s advice on what I should do in Las Vegas or do for fun in general. I don’t have any restrictions on diet or activities. Any unasked-for diet advice will be killed with fire. That’s “diet” as in “restrictive and/or supposedly healthy diet.” Advice on delicious things I ought to eat for enjoyment would be welcome.
Maybe later I will come up with something deep to say about the whole experience. Mostly I’m extremely angry at the medical system, individual doctors, and the toxic social beliefs which made an incredibly awful experience even worse by blaming me.
But for now, all I really have to say is that I didn’t think I’d live another year (and definitely hoped I wouldn’t), and now I’m hiking and seeing plays and going to Vegas.
So have a poem instead. It’s “The Moment,” by Patricia Hampl.
Standing by the parking-ramp elevator
a week ago, sunk, stupid with sadness.
Black slush puddled on the cement floor,
the place painted a killer-pastel
as in an asylum.
A numeral 1, big as a person,
was stenciled on the cinderblock:
Remember your level.
The toneless bell sounded:
Doors opened, nobody inside.
Then, who knows why, a rod of light
at the base of my skull flashed
to every outpost of my far-flung body—
I’ve got my life back.
It was nothing, just the present moment
occurring for the first time in months.
My head translated light,
my eyes spiked with tears.
The awful green walls, I could have stroked them.
The dirt, the moving cube I stepped into—
it was all beautiful,
everything that took me up
From:
no subject
From:
no subject
From:
no subject
From:
no subject
The timing of this is... perfect for me, though it is not about me whatsoever.
Here's to you and to you getting your life back. I am so so so SO happy for you.
From:
no subject
SO glad you stuck it out and got through!
From:
no subject
From:
no subject
Locally made gelato from fresh ingredients? It is my vice and I eat it once a week.
From:
no subject
Have the most fantastic time in Vegas!
From:
no subject
From:
no subject
From:
no subject
From:
no subject
And, in fact, yes! I'm lucky enough to have everything material I need or want, but donations are most welcome. I support a lot of causes on principle without needing to face an immediate personal threat, but right now the ACLU is the donation-accepting entity most likely to directly benefit me. My wife and stepdaughter are legal green card holders in the US on a same sex marriage visa. If my marriage ceases to be recognized before they're eligible for citizenship, my family faces deportation. And the ACLU does a lot of good work in general, obviously.
If anyone reading this should happen not to have money to spare on donations and should happen to be a Hunger Games fan (or hated Mockingjay so much that they'd be interested in a half-million-word long AU), in a couple of months I hope to be in a position to welcome kudos and comments on the fic I'm now putting the finishing touches on. Technically, part 1 has been up on AO3 for a long time, but I'm actually rewriting a good chunk of it that I'm not happy with, and thus I prefer people who haven't already read it to hold off a couple months until I can post the rewrite. I wish the timing lined up so I could invite people to check it out now, but oh well. Almost there.
That said, for everyone who isn't in this fandom, or who starts my fic and can't finish it or find anything nice to say about it, I will obviously take zero (0) offenses. I just thought I'd mention it because of the amount of blood, sweat, and tears I've poured into it over the last almost 3 years, and comments are a non-monetary thing that would bring me great happiness.
Again, thanks for the offer!
From:
no subject
From:
no subject
From:
no subject
From:
no subject
Advice on delicious things I ought to eat for enjoyment would be welcome.
Hmm. Have you tried heating a ripe banana and a square of dark chocolate in the microwave until the chocolate's melted and the banana's warm and soft, and mashing them together with a fork? I got that from Jack Monroe's blog, and it is way better than it sounds. Hot and comforting and very easy.
From:
no subject
From:
no subject
Alternatively, if you're in Somerville as your LJ profile indicates, and you want to meet up and geek out, let me know what your schedule looks like this week. I'm a friendly non-axe-murderer geek in Medford. :)
From:
no subject
From:
no subject
From:
no subject
From:
no subject
(I never remember to use my icons when I comment, but never again in my life will I have a better opportunity to use a Johanna Mason icon.)
From:
no subject
From:
no subject
https://www.caesars.com/content/dam/nobu/Dining/Menus/NobuTowerInRoomMenu_1110jk2%20copy.pdf
From:
no subject