Adventures in a Possible Narcolepsy Diagnosis: Part 2, WTF is Narcolepsy?

I am not a hypochondriac.  Really, it’s just that there’s frequently something wrong with me, so it seems like I’m a hypochondriac.  I like to think of myself as “on top of things.”  In this case, I very much have not been on top of things.

I confess that before Narcolepsy was brought up I had only the vaguest of ideas about what it was.  Like most people I thought it was a thing that made you fall asleep randomly in the middle of what you were doing, like in the terrible movie “Deuce Bigalow.”  As it turns out, while randomly falling asleep would indicate that you likely had Narcolepsy, that isn’t really typical for people with Narcolepsy (PWNs).

Excessive Daytime Sleepiness is the most common symptom and that’s just what it sounds like.  They say that if you wanted to experience what the day-to-day reality of a PWN is, you’d have to stay awake 48-72 hours.

I’m tired almost all the time.  I usually have about 2 hours a day where I feel properly awake.  My ESS is 16.  16 is the average score for Narcolepsy.  It’s remarkable that my score is so high considering my sleep hygiene. Dark room, earplugs, same bedtime every night, 8.5-9 hours of sleep, no caffeine, no alcohol, no nicotine, no tv in the bedroom, no books in bed. This sleep hygiene routine has maybe knocked a point or two off the ESS since my college days, when I was more prone to falling asleep driving or talking to people because of my sleep schedule.  There are other things that can cause sleepiness, Sleep Apnea and Restless Leg Syndrome being the most common, but I don’t snore, I have a well-defined palate, I don’t kick, and I’ve never had anything like restless leg feelings.

Narcolepsy SymptomsCataplexy is the second most common symptom.  Cataplexy is where you lose control over your muscles when you experience strong emotion.  Most commonly and most severely this would mean you would totally collapse when you laughed, but it can be triggered by anger or arousal or excitement and you can just lose control over one muscle group, often your head or jaw or knees.

… This symptom is the one that worries me because, as far as we know, cataplexy is a slam dunk for a diagnosis, if you have cataplexy you have narcolepsy.  I fall down a lot, several times a week, but not usually preceded by strong emotions.  I’ve always assumed it was because of low blood pressure or vasovagal response, both of which I have, but I also have falls that aren’t like the others and I lose control over my jaw sometimes when I feel very angry, anxious, or laugh.  I slur my speech, it’s a bit of a fight to talk, particularly when anxious or angry.  I can’t stand up if I cry.  And then there’s this other thing.

There’s this thing that happens when I go on roller coasters that everyone I’ve ever gone on roller coasters with gets really bothered when I try to explain it to them.  I always sort of simplify and say they make me feel like I’m going to sleep.  I don’t know if cataplexy is supposed to make you feel bad, but on roller coasters I get really excited and then it’s like my body falls asleep, like I can’t even see or hold the rail or my head up, and I’d feel like I was asleep but awake.  As a person with anxiety, it’s weirdly releasing, and it never lasted til the end of the ride, so I have no problem getting off the rollercoaster.  That same thing happens frequently if I am experiencing a great deal of pleasure in the bedroom. I won’t be able to support my weight and if I try I will do that same thing, my whole body will go limp and I won’t be able to see for a few seconds.  Recovery is instant, quick, and complete. My understanding is that what I’m describing there sounds exactly like cataplexy.

Hypnogogic Hallucinations and Sleep Paralysis are the last two symptoms.  The first describes going into REM immediately when you fall asleep so you have dreams while you think you are awake.  The second describes waking up and being unable to move your body because your body thinks you are still asleep.

For me, these symptoms happen concurrently.  Yesterday, I fell asleep in the middle of the afternoon, something I try to avoid, and spent an hour trying to wake up out of sleep paralysis and hallucinations.  I kept thinking someone was in the house but I couldn’t move, I would wake up and be unable to move and then be half-asleep again — I’d manage to move a little and then fall asleep again and again.  I finally moved enough to be able to slap myself hard in the face several times.

There are other things that aren’t symptoms but are associated with Narcolepsy:

  • Obesity related to constant hunger from sleep deprivation: Check (Though I usually manage to squeeze into the overweight class)
  • Hypocretin

    Hypocretin-producing neurons (img from Harvard)

    Other auto-immune conditions: Check (Severe Allergies, Thyroid; Narcolepsy is believed to be an auto-immune condition caused by your immune system killing all the cells in your brain that produce hypocretin)

  • Severe virus before onset or worsening of symptoms: Check (I’ve had these symptoms for a long time, but they’ve got worse since my Pneumonia, Flu, Mono trio last year)
  • Automatic behavior: Check (I do this a lot when driving long distance)
  • Brain fog/memory problems: Check
  • Difficulty paying attention: Check
  • Depression: Check
  • Low Vitamin D: goddamnit Check

On top of that, there are genetic markers that signal your likelihood of having Narcolepsy, and thanks to 23andme, I know that I have a much increased risk because of my genes.  In fact, of everything I have increased odds for getting, my chance of getting Narcolepsy is the most increased above average.  Followed closely by Parkinson’s, which is, OH GOOD, associated with Narcolepsy too.

stats2So all this points to a not impossible chance that I have Narcolepsy.  Really, the amount I’m trying to talk myself out of the possibility of Narcolepsy is probably quite laughable and hardly very skeptic of me.  The things is, as much as I’d like to fix my symptoms, if they’re something else that will just go away, it’d be better.  People with Narcolepsy have a quality of life approximately the same as those with Parkinson’s or Epilepsy.  It’s not exactly a pretty picture.  There’s no cure and no guarantee that any of the treatments will work for you.

And the treatments are kind of intense — basically they give you uppers and downers and hope it makes you alert and have better sleep than you would otherwise.  One of the most effective drugs?  Sodium Salts AKA GHB, the date rape drug.  Also almost all treatments both interfere with birth control AND you can’t take while pregnant.  Though maybe at some point there’s so much wrong with me that I really shouldn’t inflict that on a new human being anyway.

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Anyway, waiting for the diagnosis I am flipping back and forth between wanting them to say I have it so I can get a treatment and really, really not wanting to have Narcolepsy.  I guess having something that’s treatable is better than just being tired all the time with no recourse, but I’m not happy about it.

Read: Part 1, How I got Here
Next: Part 3, The Sleep Test (coming soon)

Friday Art Post

Cruella Deville - "Perfectly Wretched"  Mitzi - "tack-a-rama"Mama June - "beautimous"  Agent Scully - "I would have to say... No."RuPaul as Rachel Tensions - "I could just SPIT"  Joan Cusack as Debbie in Addams Family Values - "What about my needs?"

Adventures in a Possible Narcolepsy Diagnosis: Part 1, How I Got Here

I had just gotten into bed and was trying to fall asleep when suddenly there was a man standing next to my bed, having crept into the room without me hearing him.  Terrified, I grabbed my pillow and started hitting him and kicking him as I tried to scramble backwards off the bed in the other direction.

I was grabbed from behind by my partner and I woke up swinging my pillow and kicking wildly, crazed with fear.  It was very confusing to wake up because I had been so sure I was awake in my room, in that very spot, but it was a hallucination or a dream.  My partner was freaked out, he hadn’t even fallen asleep yet, we’d just gotten in bed a few minutes earlier, and I tried to explain what was happening but, as dreams do, it was already fading.  My racing heart and hysterics took a little longer to fade, but I fell back asleep not too much later and forgot it had happened until my partner mentioned it the following evening.

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An open letter to Michael Nugent

This was too long to fit on Twitter and I didn’t want to take to your comments section.

I recognize that you don’t owe me a response, and I feel like you are almost certainly working on one, but I would like to discuss the fact that you saw fit to respond to Richard Carrier before you responded to the “more considered posts” by me, M. A. Melby, or Secular Woman. It’s worth pointing out that you haven’t entirely ignored M. A. Melby’s post because of “having” to respond to Richard Carrier, just the “quite reasonable,” as you put it, part of it.   I would like to highlight the not unreasonable conclusion that one could draw, that indeed we were already discussing: You prioritize getting into petty internet fights about tone over everything else. In this case, you prioritize getting into petty internet fights about tone over serious-minded discussion about an accused rapist in the movement.

You’ve sat with our discussion for over a week now. There are nearly 1000 comments between the two blog posts on my site about this topic. Two other women have chosen to write about this. And done so in a tone that is much more to your preference than the tone of Mr. Carrier. And yet you choose to write a blog not in response to the women who are trying to have a discussion with you about something that they are deeply concerned about, who are writing in what you consider an appropriate tone. You choose instead to respond to a blog post written by a man relying heavily on the posts written by those women — indeed over half his post is dedicated to linking to the other sources on which he’s based his post. You choose to prove the point that if one writes in an aggressive tone, one will get attention and responses, while if one writes in a reasonable tone, one will be put on hold. I now wonder if I might have gotten a faster blog response if I’d written in a less reasonable tone myself.

And I get it, that’s an easy 3000 words to write, just like it’s easier to write 3000 angry words calling someone a fuckhead than it is to write something nuanced. But I think in choosing to respond to the angry tone instead of the nuanced tone you’re guilty of promoting the same thing you’re saying you’re against.

Mr. Nugent, you also state at the beginning of the article that you “have to” respond because of how Mr. Carrier has portrayed you and Atheist Ireland. You really didn’t. You chose to. There are always going to be people misrepresenting you on the internet. There are always going to be people whose tone you’re going to want to correct. There’s always some new fight to be had if you’re itching to write 3000 words about how someone is wrong on the internet. And, to be clear, you chose to respond to that one. And that’s fine, but I want you to understand the message that all of this sends, because it’s the same message you were already sending: Michael Nugent cares more about tone than he does about women.

I don’t think that’s the message you want to be sending, based on the mission of Atheist Ireland, I know it’s not.

 

ETA from comment below: The point of this, like the previous posts, is not that Michael Nugent is a bad guy. It’s that he keeps doing things online that make him look like a bad guy and he’s either unaware of them, in which case hopefully writing them out calmly in a blog post and explaining why they look how they look will help him understand why people see them the way they do, or he doesn’t care about the people who are interpreting his actions that way and he’d just as soon write them off as engage with them, in which case I think his tone arguments are hypocritical. Either way, I don’t see a course of action for myself that is more rational than to call his attention to the interpretations and see what he makes of them.

Prettying up the place

As you may have noticed, I’ve got a fancy new banner.  Several of them, in fact, thanks to the work of Alex Gabriel.

Screen Shot 2015-04-15 at 6.52.12 PM
He also made me some business card style square designs.

07 - v3EjX3v10 - qsWlQTZ
09 - vLiIs54 08 - a0dOfxI
I know y’all are just impressed as all get out.  I am pleased, it’s much better than my previous logo.  I am especially pleased because it’s all based on my art — it’s a really lovely marriage of my maths brain and my arts brain.  I think he will give a better break down of the design process but these are the paintings I sent him from which he designed these.


lueuaHo r5vPi4w
 LjvHMJH
zC4Ts0q hUgyE1J
tRF7wlD
There’s also a shiny new headshot with my old bio that I may get around to updating.  I’ve also got a fancy new donate button, because it was requested of me by a reader, Deepak Shetty, who was kind enough to actually give before I figured out how to set it up.  I’ve also got an Amazon carousel thing because I signed up for this Amazon thing and they yelled at me that they were shutting me down if no one bought anything from my linking to them, which is fair, as I’ve never linked through them.

In all cases, don’t feel obligated to donate or buy anything, I just put the donate button up because I was asked to, and I am deeply flattered, and the Amazon thing is really an experiment.  You can’t see it if you’ve got AdBlock anyway.  It’s mostly there to show you what ukulele I bought, what gender text book I’m in, and that I eat too many Rowntree’s.  Did my taxes today… my average monthly payment from FtB in 2014 was, you know, $14.13, so, you know.

Anyway, as you may or may not know, I was diagnosed with severe Vitamin D deficiency last week.  I’ve been sick since last July, and it didn’t occur to anyone to test for that because, as the Slymepit noted, I’m extremely pale and it takes very little sunlight for someone of my skin tone to make adequate Vitamin D. On top of that, I live in South Carolina, not the Arctic Circle, so someone like me developing a Vitamin D deficiency is approximately like someone on an orange farm developing scurvy, it just didn’t occur to anyone.  My deficiency is likely due to the fact that I work from home, am also writing a dissertation (theoretically), am allergic to most of the things that grow outside, and avoid sunlight because I burn so easily.  Then it became a bit of a runaway problem because Vitamin D deficiency makes you more susceptible to catching viruses, which meant that despite my pneumococcal and flu vaccines and being well out of age range, I got pneumonia in the summer, then the flu, and then, for Christmas, mono, all of which lasted a very long time and kept me indoors even more than normal.

I have only lately been gaining my energy back from the mono and am now being treated for the deficiency so I have some hope that the massive cloud of fatigue and never ending stream of illnesses I’ve been battling since last summer might finally lift in the next month or two, which is apparently how long it takes for supplements to kick in.

More on Shermer, PZ, and Michael Nugent

Ashley to Michael: I'm asking whether it's unreasonable for someone to feel uncomfortable when you say it's wrong to call Shermer a rapist.  Michael to Ashley: That's a question I haven't heard before. I don't know. I'll think about it and get back to you. Capped from Damion Reinhardt's Storify

I wanted to respond at length to both Michael Nugent, who I’ve spoken with over Twitter, and to many commenters who agree with him in the previous post and on Twitter.

I don’t have a problem with Michael Nugent’s distaste for PZ’s tone.  I don’t agree in general, though like Nugent, I found PZ to be lacking in his posts about Dawkin’s childhood sex abuse and Robin Williams’ suicide.  PZ has always been a pit bull, and it generally gives his posts clarity and humor, both of which I appreciate.  But, I don’t really care if you hate that, that’s fine, to each his own.

I also don’t really have a problem with Atheist Ireland’s dissociation with PZ.  Again, freedom of association, to each their own.  I do think that, while they’ve made an exhaustive list of why they don’t like his tone, they’ve failed entirely to even try to make a case as to why an American blogger’s tone has any relevance to the work they are doing.  I’m not sure what harm PZ has actually caused to Atheist Ireland, beyond making Michael Nugent very unhappy. Why Atheist Ireland’s agenda includes breaking up with bloggers is beyond me.

The problem I have with Michael Nugent fundamentally boils down to his 9/17/14 blog post in which he equivalizes his complaints about PZ’s tone in his posts to PZ agreeing to post a firsthand account of rape in which the victim names her rapist.  This post by Nugent is in response to a lengthy, in-depth article by well-respected journalist Mark Oppenheimer, known for his work at the New York Times, in which Oppenheimer details multiple accusations of misbehavior on the part of Michael Shermer.

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The Background of Atheist Ireland’s Breakup with PZ: It’s about Michael Shermer

Edits from earlier versions: Two major edits from information sent to me via Twitter by people who were, I think, trying to be hostile, but who I appreciate sending me the information. Ron Lindsay did not ask Rebecca Watson to take down her post, he asked her to reword it and the link to his post has been reworded to reflect that; this was a misremembrance on my part. The second is that I added screencaps and reworded the description of the Slymepit to be more accurate. The inaccuracy previously was the suggestion that they stalked people’s hospitals, which seems to be a game of telephone garbled interpretation I heard of an event that is linked to, in which they took PZ’s hospitalization as an opportunity to make up STD rumors about him. While I did have 2 editors fact check the post, they missed these, as did I.

Mixed Rape Finals - Members of FtB judging a rape; unauthorized photoshop of Brian Engler's original photo

I’m not entirely sure if the joke is that we’re judging our own rapes or a rape we’ve witnessed.

So in recent days, there’s been a bit of drama in the atheist movement over Atheist Ireland and PZ Myers that I’ve spent a bit of time trying to fully understand the background of.  Since I spent all the time getting a big picture overview, I thought other people might like to have access to it as well.  I don’t regularly follow any of the main players’ blogs, and I’ve been ill for the last 8 months, so I haven’t regularly followed anything during that time.  That said, the tl;dr version of the story is that it’s about Michael Shermer, and the longer version follows.  It’s not convoluted, it’s just happened over a long period of time.

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Terry Pratchett aten’t dead

Death is good at his jobI’ve nothing profound to say about the death of my favorite author and one of my favorite human beings now that I’ve stopped crying enough to type, but I’ll try. Terry Pratchett had an immense influence on my own writing style, including some bad habits, and on my humanistic philosophy, including some opinions on exclamation points. His death feels like losing a friend, a mentor, and a family member.

Selfishly, I mourn the future stories of dozens of characters that I loved and now feel a little bit lost to me too: Esme Weatherwax, Sam Vimes, Tiffany Aching, the Patrician, and Archchancellor Ridcully are just a few that I feel I’ve lost.

I’ve had two Pratchett quotes up on Facebook for the decade I’ve been on it, so I’m glad that I celebrated him while he was alive and might somehow have been able to appreciate it. But perhaps I’ll share one more now. *Leans in conspiratorially.*

“Do you not know that a man is not dead while his name is still spoken?”

Leelah Alcorn and Being a Parent to Trans Teens

Drawing by Leelah Alcorn

Leelah was a talented artist

I was recently on the Scott Sloan show on 700WLW in Ohio to talk about Leelah Alcorn and how parents should deal with their children revealing that they are trans.  This is a pretty big deal for me — it’s a nationally syndicated show that reaches a huge audience.  Sloan misgenders Leelah a couple times in the intro, but I get the sense from this, and other things that I’ve listened to, that he’s someone who’s more or less on the right side of the issue and trying to make it palatable to what he senses Middle America to be.  For those who don’t know, Leelah Alcorn was a trans teen who killed herself last month in response to being isolated from her friends, forced into Christian therapy that was meant to make her be cisgender, and denied the ability to start to transition.

My major point is that when children need medical care that their parents don’t believe in, the state intervenes to ensure that those children get the care that they need.  Jehovah’s Witness parents don’t get to deny their children blood transfusions, parents that believe in homeopathy don’t get to deny their children chemotherapy.  We don’t prosecute those parents for child abuse, unless the child dies from medical neglect, but we also don’t let them destroy their children because of their personal beliefs in unscientific nonsense that will lead to the deaths of their children.

When parents deny proper care to children who aren’t cisgender, they are contributing to a state in which that child is guaranteed to suffer and may die.  Suicide is the third most common cause of death for teens, but it’s even more common for transgender youth.  In cases like Leelah Alcorn’s, it is often predictable and can be preventable.  41% of those who identify as trans will attempt suicide in their life and that number jumps much higher, into the 70-80% or higher, if they are mistreated by their family, are denied the ability to get medical treatment, are out as a teen, and suffer from depression or other mental health conditions, as Leelah was and did.  The national average for suicide attempts, by the way, is around 5%.  For LGB people, it’s 10-20%.

Charlie Hebdo, the attack on the NAACP, and racism

There have been a lot of accusations of racism thrown around in regards to the work of Charlie Hebdo and the media coverage (or lack thereof) around the domestic terrorist incident at the NAACP in Colorado and I want to tease out some of these ideas that I’ve seen.

1. Accusation: Media coverage of Charlie Hebdo and not the NAACP is racist

The idea here is that the media covered Charlie Hebdo because the villains were people of color and the dead were white, while the NAACP is an organization for people of color that was attacked by a white person.  The media thinks people are more likely to respond to narratives where the heroes are white, even if they are French.

I think this accusation is wrongheaded for a number of reasons.

1. No one died in the NAACP attack, 12 people died in France.

2. One of the more compelling stories to come out of France is the story of the Muslim police officer who was killed defending Charlie Hebdo against the terrorists.

3. The villains are organized and have been established villains in popular imagination.

4. Most importantly, the victims are other members of the media.  It cannot be overstated how much the media latches onto stories of the media being victimized.  This bias in the media is the most mundane one, and one that rarely gets talked about over the left vs right bias.

2. Accusation: The media not covering and being slow to cover the NAACP domestic terrorism is racist

When you separate it from the comparison to Charlie Hebdo and just note that the media has been a bit reluctant to pick up the story, then yeah, I think this is a reasonable complaint.  This is a big deal and should be big news.  It does seem to be picking up a bit now.

3. Accusation: Charlie Hebdo made racist cartoons

Ehhh, this is complicated.  Of course it is, isn’t everything?  A lot of the commentary around these cartoons has been, in my opinion, very shallow, both in the accusations of racism and the defense from racism.  I think everyone is, of course, welcome to their opinion, this is not a personal criticism of any individual.

Political cartoons are almost always kind of racist the moment you put people of color in them.  Not putting any people of color people in them would also be pretty racist.  This is because caricature relies heavily on stereotype to get messages across quickly — all communication does, but political cartoons do even more extremely.  Now, show a bunch of edgy political cartoons to people who don’t understand the language on the cartoons or the culture that produced the cartoons and ask them how racist those cartoons are?  Yeah, they’re going to think they’re really racist.  None of that, by the way, relieves cartoonists of the responsibility to make not racist cartoons.  That said, many of the cartoons that are being called out as racist are making points against oppression of minorities or oppression within minority culture or referring to specific racist behavior of politicians or other figures.  That doesn’t make them entirely not racist, but it also makes them complicated.  They also come in the context of Charlie Hebdo being equal opportunity offenders.

However, Charlie Hebdo’s many layered context comes in the further context of France being a really awful place to live if you’re Muslim.  It’s an incredibly racist and xenophobic society.  What does that all mean?  Not any one thing, except that if you are going to read criticism of Charlie Hebdo’s interaction with race, make sure it is nuanced and culturally specific and not just, “Look at this racist cartoon.”  And just because a cartoon is racist or has racist elements, that doesn’t mean the publication or the people behind the publication were “racists.”  Finally, I personally am really hesitant to take seriously any criticism of these cartoons unless it comes from someone who is a fluent French speaker and follows French politics closely, criticism from anyone else veers perilously close to cultural imperialism for lacking enough context unless they’ve done an immense amount of research.

4. Accusation: Calling Charlie Hebdo cartoons racist means you don’t support free speech

No. Nope.  Incorrect.  There are a small group of people who think that the cartoons are hate speech and shouldn’t be allowed to be published, but the vast majority of people who think that the cartoons are grotesquely racist have valid reasons for doing so and are making points about complicated histories and relationships between people and media.  They are worth listening to even if you ultimately disagree with their conclusions.  And people thinking that speech is terrible doesn’t mean they want to regulate it away.  I think the KKK and Westboro Baptist Church should be allowed to say things.  I also think they are horrible.  These two things reflect totally different values that I hold independently in the same head.

5. Accusation: You can’t be racist against Muslims

Usually accompanied with “Indonesia has the largest population of Muslims in the world.”  To which I say, “Show me one Charlie Hebdo drawing that is of someone from Indonesia.” Islam is not a race, but that really doesn’t matter, because the Western world has a racial idea of what it means to be Muslim.