Bad Positives

A few days ago, I decided to give in to my curiosity about the lab results my super-awesome1 rheumatologist ordered when I went in for my sweat hiatus.2 The checkout slip had my login details for that office’s EMR on it, so I went to check it out. 

Aside from finding out how truly abysmal the office’s record keeping skills are—my medicine, surgery, & allergy lists were inaccurate, he claimed he prescribed my Effexor, he was consulting with a doctor I haven’t seen in 6-7 years about my case, he had 4 visits total listed, even though there have been at least 12-16 visits, old lab reports were missing, old prescription data from drugs he’d prescribed was missing—I found out that he had a “plan of care” that revolved around telling me how fat I am3 and how I need to start exercising.4 I also found out that he thinks I’ve been on my Flexeril too long. I’m fairly certain that I pointed that little issue out about two or three years ago when I asked him to try something else because the Flexeril had become ineffective. But hey, it’s just my body, what do I know? 
I would claim that I felt incredulous,5 but I can’t fake my disbelief over his ridiculous & somewhat terrifying antics. Seven years of this same old bullshit just wears a girl out.6
But this isn’t supposed to be about his incompetence. This is supposed to be about lab results. Tell me what your first reaction would be to these results. 


Notice anything odd about them? 

There are no units of measure listed on the ANA test. And the way the “normal range” section is phrased sounds like anything above 120 or below 100 is bad. Think again. 

I had to search for an explanation of these results harder than a Disney prince has to search a magical forest for a barely legal future wife to take home to his dysfunctional family.  

And I found one.

Sort of. 

Apparently, the range should read like this:

  • Negative: Below 100
  • Equivocal: 100-120
  • Positive: Above 120

So I tested positive for the ANA Qualitative Test, the SSA (Ro) antibodies test, and the Scl-70 test. That could indicate: Lupus, Sjögren’s, Scleroderma, MCTD, UCTD, etc. It could also be a fluke because truly healthy people can have positive readings on these tests, and people diagnosed with them can have negative ones. So I’m not worrying too much about that. 

I’m a bit more concerned with my CBC because my platelet volume was almost too low, while my platelet count was close to the upper limit. Combine that with an increase in red blood cells and you’ve got a warning that the anemia isn’t far from striking. I guess that explains why I’ve felt more down & out, and why my body has gone into the “I’m dying” feeling that accompanies the anemia. I’m going to get the rheumatologist to forward that part of the labs to my hematologist, to make sure waiting to the end of the year for my tests + infusions is still safe. I really dread the infusions, but they’re part of my life now. I will just have to deal. 

Anyway, you know how I restarted my Pilocarpine/Salagen after the last rheumatologist appointment. Apparently it’s started helping because I have, drumroll please, started sweating. You never really can appreciate sweating and its purpose until you’ve gone without it. When I noticed how sweaty I was getting, I was ready to do backflips, except that I can’t do them.7 Another thing that I noticed is my mouth hasn’t been as dry, which is really strange because I’ve had dry mouth issues since I was a child. But I’m thankful for the saliva, too. It’s amazing how little things that most people take for granted or get annoye or disgusted by can make me want to do a happy dance. 


  1. at forgetting 

  2. The thing that’s potentially fatal, but that my rheumatologist is all blasé about. Who needs sweaty pits and tits in 90-100°F humid, summertime-in-Alabama weather? Oh, right, everyone. 

  3. 16 points of a 23 point list 

  4. Because telling a doctor that you’re concerned that a 45-minute, 1.8 mile walk in 85°F+ didn’t cause you to sweat and that the overheating was limiting your exercise choices doesn’t get the message across that you’re actually exercising. 

  5. Not a Disney movie title adjective, though it could be. 

  6. A girl has no name. 

  7. I never could, unless I did them accidentally while falling. 

“She’d learned long ago that everyone lets you down eventually—”

“She’d learned long ago that everyone lets you down eventually—it was just a matter of when.”

Crash Into You by Roni Loren
via Tumblr

Photo credit: Johnny Silvercloud via Visual Hunt / CC BY-SA

Call Me Janet the Divine. On Second Thought, Don’t. 

Well, I never mentioned how the rheumatologist appointment went. I guess that’s because it happened almost exactly as I a predicted. It was bad. How bad was it? It was so bad that I wish I could time travel to the past and let Rodney Dangerfield use it as material for some of his “How bad was it?/It was so bad” jokes.

Everything was fine until the doctor came in. He half-listened to my complaint, said that anhidrosis isn’t a symptom of anything he treats, and told me that all that he ever saw me for was “loose joints” and pain. I told him that the family doctor said she thought my “loose joints” and lack of sweat were related. He said no. I said she thought he should treat it because he treats connective tissue disease. He went into a long rambling session about how my family doctor meant that he treats autoimmune diseases and that “loose joints” aren’t really a connective tissue disease because they don’t involve the immune system. He said that “loose joints” are a collagen issue and that they only cause problems in the joints themselves. I tried correcting him on his ignorance, but when I did, he repeated his rambling. 

My mom asked if it could be from the Sjögren’s/UCTD. He said it was possible, but that those were connective tissue diseases & I didn’t have connective tissue diseases. She mentioned Mamama had Sjögren’s and he said it was possible that I inherited it from her. That “Sjögren’s is genetic” part of his ramblings was almost verbatim from the ramblings he made that time seven years ago when I tested “positive” for the antibodies related to Sjögren’s. He looked in my mouth and said it was dry. He asked about my eyes & I told him that the ophthalmologist had done the paper test years ago. He asked about the results and I practically rolled by sore, dry eyes at him as I told him that they’d been dry. He said he would test me again for Sjögren’s and that if it was positive he might consider putting me on Pilocarpine. 

He then said something about Pilocarpine costing $95/month and insurance never covers it. You know, so I wouldn’t expect a prescription for it. The funny thing is that I knew he was bullshitting on that part. You see, I had been given a prescription for a medication called Salagen given to me by the UAB doctors a few months ago. They’d noticed my mouth dried out too much for me to talk. Salagen is the brand name of Pilocarpine. It costs $1.20 for 120 pills; 120 pills is a monthly supply.

I left the appointment feeling like the air had been sucked out of my lungs. By the end of the appointment, I didn’t know whether I was pissed at him or myself. The longer he rambled, the more I felt myself retreating into the “doesn’t speak up for herself” zone. I started feeling incompetent. I started feeling like maybe I was the one who was uninformed. 

But my family and my therapist wouldn’t stand for that thinking. 

I’m not the one who:

  • Doesn’t understand that connective tissue disease is an umbrella term for many kinds of diseases.1
  • Doesn’t understand that many autoimmune and non-autoimmune diseases can cause sweating to cease. 
  • Doesn’t keep adequate patient records. 
  • Doesn’t listen to the patient or their family. 
  • Failed to prepare or educate myself before the appointment. 

I’m not the incompetent one. He is. 

My mom said I need a new rheumatologist. When I told Debbie about the appointment & about the phone calls, she said I need a new rheumatologist. Guess what I discovered in my search got rheumatologists who take my insurance?! I’m pretty much stuck with a doctor who doesn’t know what the hell he is doing. 

I hate the phrase “fuck my life” but it almost seems appropriate here. 

Photo credit: C_Dave via Visual Hunt / CC BY-NC


  1. Joint Hypermobility Syndrome & Ehlers-Danlos are connective tissue diseases. 

Dear Amanda Lauren

Dear Amanda Lauren,

It still disgusts me that you were so cruel in your @xojanedotcom piece about someone you once considered your friend. Not just to her, but to her family, to her true friends, to people with schizoaffective disorder, to the mental health community in general, and to the people who have friends or family with mental health issues. To claim that you were doing it to boost awareness is frightening. You didn’t boost awareness of anyone or anything except yourself or your hunger for fame.

You clearly crave drama. Your other pieces seem to indicate this, as did, let’s not mince words, cyberstalking your former friend. You didn’t need to see what was being said about you. You chose to either because something in you felt more alive with this young woman as your adversary or you felt like her hate justified some level of hatred you have for yourself. The Internet allows people to give into self-destructive urges like that. You should work on that because it will not only be potentially harmful to your career, but it will push away people who make up your support system.

You should apologize to everyone harmed by your words, especially the family of your friend. I hope they didn’t read your piece, but if they did, then I can only imagine how that impacted them. Did you even think about them? Did you bother to ask permission to memorialize their loved one as a lost cause? Or were you too busy concentrating on the fame and drama this kind of story might get you?

Whatever your reason, it was the wrong thing to do. You should be ashamed not of sharing your name but of hurting people so viciously. You shouldn’t try advocating on behalf of people who have chronic illnesses who you see as being undeserving of life because they’re sick. Your words were not wanted and your advocacy is unneeded.

Apologize. Learn from your mistakes and don’t do this again. The attention you got was not worth it.

from Destigmatize Me http://ift.tt/20kIAvg
via IFTTT

How We Remember 

I don’t know why I needed to know her name, but it didn’t find long to discover it. A few details and suddenly this woman who had been dehumanized by someone who was once her friend had her name and history restored to her. She was whole again. I know a fake name was likely meant to “protect” the privacy of her family, but it just seemed like a way to further diminish her. 

“Leah” deserved more respect than Amanda Lauren gave her.

She was more than her disease and she deserves to be remembered for more than her mental illness. She was a person. She was also a daughter, sister, friend, writer, actress, yoga instructor, and graduate of Tisch at NYU. She was loved.

This is how we should remember her. 

In the obituary, her family asked that donations be made to the Stella Adler Studio of Acting at NYU-Tisch. If you want to do so and can afford to do so, then I think that would be an awesome way to remember this young woman. 

Last Thoughts on Woody Guthrie

by Bob Dylan

When yer head gets twisted and yer mind grows numb
When you think you’re too old, too young, too smart or too dumb
When yer laggin’ behind an’ losin’ yer pace
In a slow-motion crawl of life’s busy race
No matter what yer doing if you start givin’ up
If the wine don’t come to the top of yer cup
If the wind’s got you sideways with with one hand holdin’ on
And the other starts slipping and the feeling is gone
And yer train engine fire needs a new spark to catch it
And the wood’s easy findin’ but yer lazy to fetch it
And yer sidewalk starts curlin’ and the street gets too long
And you start walkin’ backwards though you know its wrong
And lonesome comes up as down goes the day
And tomorrow’s mornin’ seems so far away
And you feel the reins from yer pony are slippin’
And yer rope is a-slidin’ ‘cause yer hands are a-drippin’
And yer sun-decked desert and evergreen valleys
Turn to broken down slums and trash-can alleys
And yer sky cries water and yer drain pipe’s a-pourin’
And the lightnin’s a-flashing and the thunder’s a-crashin’
And the windows are rattlin’ and breakin’ and the roof tops a-shakin’
And yer whole world’s a-slammin’ and bangin’
And yer minutes of sun turn to hours of storm
And to yourself you sometimes say
“I never knew it was gonna be this way
Why didn’t they tell me the day I was born”
And you start gettin’ chills and yer jumping from sweat
And you’re lookin’ for somethin’ you ain’t quite found yet
And yer knee-deep in the dark water with yer hands in the air
And the whole world’s a-watchin’ with a window peek stare
And yer good gal leaves and she’s long gone a-flying
And yer heart feels sick like fish when they’re fryin’
And yer jackhammer falls from yer hand to yer feet
And you need it badly but it lays on the street
And yer bell’s bangin’ loudly but you can’t hear its beat
And you think yer ears might a been hurt
Or yer eyes’ve turned filthy from the sight-blindin’ dirt
And you figured you failed in yesterdays rush
When you were faked out an’ fooled white facing a four flush
And all the time you were holdin’ three queens
And it’s makin you mad, it’s makin’ you mean
Like in the middle of Life magazine
Bouncin’ around a pinball machine
And there’s something on yer mind you wanna be saying
That somebody someplace oughta be hearin’
But it’s trapped on yer tongue and sealed in yer head
And it bothers you badly when your layin’ in bed
And no matter how you try you just can’t say it
And yer scared to yer soul you just might forget it
And yer eyes get swimmy from the tears in yer head
And yer pillows of feathers turn to blankets of lead
And the lion’s mouth opens and yer staring at his teeth
And his jaws start closin with you underneath
And yer flat on your belly with yer hands tied behind
And you wish you’d never taken that last detour sign
And you say to yourself just what am I doin’
On this road I’m walkin’, on this trail I’m turnin’
On this curve I’m hanging
On this pathway I’m strolling, in the space I’m taking
In this air I’m inhaling
Am I mixed up too much, am I mixed up too hard
Why am I walking, where am I running
What am I saying, what am I knowing
On this guitar I’m playing, on this banjo I’m frailin’
On this mandolin I’m strummin’, in the song I’m singin’
In the tune I’m hummin’, in the words I’m writin’
In the words that I’m thinkin’
In this ocean of hours I’m all the time drinkin’
Who am I helping, what am I breaking
What am I giving, what am I taking
But you try with your whole soul best
Never to think these thoughts and never to let
Them kind of thoughts gain ground
Or make yer heart pound
But then again you know why they’re around
Just waiting for a chance to slip and drop down
“Cause sometimes you hear’em when the night times comes creeping
And you fear that they might catch you a-sleeping
And you jump from yer bed, from yer last chapter of dreamin’
And you can’t remember for the best of yer thinking
If that was you in the dream that was screaming
And you know that it’s something special you’re needin’
And you know that there’s no drug that’ll do for the healin’
And no liquor in the land to stop yer brain from bleeding
And you need something special
Yeah, you need something special all right
You need a fast flyin’ train on a tornado track
To shoot you someplace and shoot you back
You need a cyclone wind on a stream engine howler
That’s been banging and booming and blowing forever
That knows yer troubles a hundred times over
You need a Greyhound bus that don’t bar no race
That won’t laugh at yer looks
Your voice or your face
And by any number of bets in the book
Will be rollin’ long after the bubblegum craze
You need something to open up a new door
To show you something you seen before
But overlooked a hundred times or more
You need something to open your eyes
You need something to make it known
That it’s you and no one else that owns
That spot that yer standing, that space that you’re sitting
That the world ain’t got you beat
That it ain’t got you licked
It can’t get you crazy no matter how many
Times you might get kicked
You need something special all right
You need something special to give you hope
But hope’s just a word
That maybe you said or maybe you heard
On some windy corner ‘round a wide-angled curve

But that’s what you need man, and you need it bad

And yer trouble is you know it too good

“Cause you look an’ you start getting the chills

“Cause you can’t find it on a dollar bill
And it ain’t on Macy’s window sill
And it ain’t on no rich kid’s road map
And it ain’t in no fat kid’s fraternity house
And it ain’t made in no Hollywood wheat germ
And it ain’t on that dimlit stage
With that half-wit comedian on it
Ranting and raving and taking yer money
And you thinks it’s funny
No you can’t find it in no night club or no yacht club
And it ain’t in the seats of a supper club
And sure as hell you’re bound to tell
That no matter how hard you rub
You just ain’t a-gonna find it on yer ticket stub
No, and it ain’t in the rumors people’re tellin’ you
And it ain’t in the pimple-lotion people are sellin’ you
And it ain’t in no cardboard-box house
Or down any movie star’s blouse
And you can’t find it on the golf course
And Uncle Remus can’t tell you and neither can Santa Claus
And it ain’t in the cream puff hair-do or cotton candy clothes
And it ain’t in the dime store dummies or bubblegum goons
And it ain’t in the marshmallow noises of the chocolate cake voices
That come knockin’ and tappin’ in Christmas wrappin’
Sayin’ ain’t I pretty and ain’t I cute and look at my skin
Look at my skin shine, look at my skin glow
Look at my skin laugh, look at my skin cry
When you can’t even sense if they got any insides
These people so pretty in their ribbons and bows
No you’ll not now or no other day
Find it on the doorsteps made out-a paper mache
And inside it the people made of molasses
That every other day buy a new pair of sunglasses
And it ain’t in the fifty-star generals and flipped-out phonies
Who’d turn yuh in for a tenth of a penny
Who breathe and burp and bend and crack
And before you can count from one to ten
Do it all over again but this time behind yer back
My friend
The ones that wheel and deal and whirl and twirl
And play games with each other in their sand-box world
And you can’t find it either in the no-talent fools
That run around gallant
And make all rules for the ones that got talent
And it ain’t in the ones that ain’t got any talent but think they do
And think they’re foolin’ you
The ones who jump on the wagon
Just for a while ‘cause they know it’s in style
To get their kicks, get out of it quick
And make all kinds of money and chicks
And you yell to yourself and you throw down yer hat
Sayin’, "Christ do I gotta be like that
Ain’t there no one here that knows where I’m at
Ain’t there no one here that knows how I feel
Good God Almighty
THAT STUFF AIN’T REAL”

No but that ain’t yer game, it ain’t even yer race
You can’t hear yer name, you can’t see yer face
You gotta look some other place
And where do you look for this hope that yer seekin’
Where do you look for this lamp that’s a-burnin’
Where do you look for this oil well gushin’
Where do you look for this candle that’s glowin’
Where do you look for this hope that you know is there
And out there somewhere
And your feet can only walk down two kinds of roads
Your eyes can only look through two kinds of windows
Your nose can only smell two kinds of hallways
You can touch and twist
And turn two kinds of doorknobs
You can either go to the church of your choice
Or you can go to Brooklyn State Hospital
You’ll find God in the church of your choice
You’ll find Woody Guthrie in Brooklyn State Hospital

And though it’s only my opinion
I may be right or wrong
You’ll find them both
In the Grand Canyon
At sundown

via Tumblr

Photo credit: simonm1965 via Visual Hunt / CC BY-NC

Defined Parameters

“You know how I don’t like to describe people or the things they do as evil? What she wrote was truly evil.”

That was how I described Amanda Lauren’s essay describing an ex-friend’s life with schizoaffective disorder and that friend’s death to my mother. I had already ranted to my father and complained on social media. I couldn’t tell my mom that this total stranger was happy her mentally ill friend was dead. I knew that if I told her that that I would break down. Each time I’ve thought about what was written, I’ve had to stop myself from crying or screaming or begging to be taken to the hospital because my mind starts going down the all too familiar path of my-friends-and-family-would-probably-be-happy-if-I-died-too. It was probably a path that “Leah” was familiar with as well.

There was always something about her that wasn’t quite right.

Lauren’s essay is narcissistic drivel at best. Her friend wasn’t living up to a standard that she expected of her, so she wrote her off. She could justify this lack of understanding by saying her friend failed her. 

“Leah” didn’t clean her house, so she was undeserving of respect. “Leah” didn’t have steady relationships, so she was undeserving of respect. “Leah” was a cam girl, so she was undeserving of respect. “Leah” had delusions, so she was undeserving of respect. “Leah” pursued her crush and failed in a job Lauren secured for her, so she was undeserving of respect. “Leah” had body image issues, so she was undeserving of respect. 

It didn’t stop at her friend’s failures. The friend’s parents also failed her. Because “Leah”‘s parents didn’t magically cure their daughter of an incurable disease, they failed their daughter and failed Lauren because now she had to deal with their daughter’s erratic behavior. Every struggle “Leah” went through was actually harder on Lauren because the world is apparently all about her.1

Lauren’s lack of compassion was horrid, but her choice to use a platform like xoJane during Mental Health Awareness Month to publish a tale highlighting her ignorance was almost worse. This is a month when mental health patients, caregivers, advocates, and healthcare providers try to educate others. It’s a month to become more considerate of the day-to-day struggles for mentally ill people. Lauren and xoJane could have explained what schizoaffective disorder is, how it impacts people who have the issue, and why they behave the way that they do. They could have explored the actual suffering of “Leah” and not focused on the self-involvement of Lauren. 

I can’t understand how a parent would let their child go on like this. Clearly, she was suffering and severely ill. If her disease were physical, would they have let her deteriorate to that point?

Schizoaffective disorder is a chronic illness. It is sometimes considered a spectrum disorder because it involves overlapping symptoms of schizophrenia and mood disorders like depression and bipolar disorder. It is not as well understood as schizophrenia, bipolar disorder, or depression because it isn’t studied as often and is less common; it is seen in 0.3% of the population compared to 1.1%, 2.6%, and 6.7% for schizophrenia, bipolar disorder, and major depression, respectively. It isn’t well recognized by doctors or therapists; a lot of patients with it are diagnosed with a mood disorder or with schizophrenia first. It impacts men and women at the same rate, but, like schizophrenia and bipolar disorder, men typically develop it earlier than women. It can be treated, in most cases, by self-management, medication, and therapy, but people who have it are at risk for substance use disorders, suicide, attention deficit disorder, and anxiety disorders. Schizoaffective disorder is caused by genetics, brain chemistry, brain structure, stress, and drug use.

There are two types of schizoaffective disorder: bipolar and depressive. If the person has mixed or manic episodes, they have the bipolar type; otherwise, it’s the depressive. Unlike other situations, it’s actually better to have the bipolar type. Having it is less likely to result in suicide than having the depressive type. It is considered by some mental health professionals to be more severe than mood disorders, but less severe than schizophrenia. 

Because it is classified alongside schizophrenia as a psychotic disorder, it is more difficult to find providers willing to treat it. And treatments may be harmful to patients. Or they may not work. 

In my case, I have had many therapists “pass me off” to colleagues. I have tried multiple antidepressants, mood stabilizers, and antipsychotics. I’ve had many that didn’t work. Most have caused weight gain, including two that caused gains of fifty pounds or more. I’ve had seizures as a result of one medication. I’ve had a variety of less severe reactions to others. I even developed a temporary medicine-induced case of hyperthyroidism. Eventually I was switched to a high dose of an antidepressant, somewhat regular therapy, and self-management. 

I will always have this disorder. My parents can’t make it go away. Medicine can’t either. 

But I can cut people like Amanda Lauren out of my life. She thought “Leah” was toxic because of her issues, but, from my perspective, it was Lauren who was toxic. Yes, there were negative behaviors exhibited by “Leah”, but she was only behaving that way because of her illness. What was Lauren’s excuse? Why was she so petty, so judgmental? And why did she feel the need to cast herself in the role of victim? Why does she feel no shame in her words? 

I don’t understand how one person can be so selfish, petty, and cruel. As those are personality traits that can be traced back to parenting, I wonder why her parents let her attitude deteriorate to this point. Shouldn’t they have done something before their child became this remorseless beacon of hate?

Photo credit: Cameron Bathory via Visualhunt.com / CC BY
Updated: May 21, 2016 at 7:42 pm: Changed link to essay to one from archive.is as the Google cache link has updated to the “apology” by Jane Pratt


  1. Donald Trump could replace Melania with her. They’d be perfect for one another.