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. 

Last Night on Twitter 

I posted this last night on Twitter. I think it’s from sixth grade. It may be fourth or fifth. I know it’s not seventh or eighth because of the massive haircut before seventh grade.

Anyway, when I scanned it this weekend, I remembered how much I hated picture day. It wasn’t just my self-esteem issues that made it difficult. I would get stressed out over how to smile properly for a picture. I would obsess all day over getting the smile right, because I thought that if I didn’t, the picture wouldn’t look right and I would be laughed at. Okay, so maybe it was the self-esteem thing.

And I would think they were just trying to placate me, when the pictures would come back and my friends would say, “Oh, you’re so pretty.” Because I knew that there was something wrong with my picture—something wrong with me. And I could pick out every flaw in the picture to prove how wrong the compliments were.

I still struggle with that, but it is getting easier.

Selfies have made it easier. I can still see the blackheads, the messy hair, the bra strap sticking out, the weight, all the freckles, the lower jaw sticking out, the nose that always made me self-conscious, the half wavy/half straight hair, the unplucked eyebrows…but I also see the girl who put so much time and effort into hating herself that she couldn’t appreciate her own beauty, her own life. Selfies taught me to smile and every time I smile, I get a little happier.

But that’s why it irks me when people say people who can’t see their own beauty are “fishing for compliments” or that people who take a lot of selfies are “full of themselves” because there are a lot of people out there who have low self esteem or body image issues. Let people feel good about themselves. Life is hard enough as it is—why not let people feel comfy in their own skin.

via Tumblr

Operation: Get My Life Back (& My Knee Fixed)

 Well, I survived my surgery. 

Yay!

I got to the hospital on time & got checked in/taken to pre-op almost immediately. Of course I had to do the required pregnancy test.1  

Eventually, a nurse2 came in to set-up an IV—she only stuck me once, thus allowing her to join my unofficial Hall of Fame—while my nurse3 reviewed my medical history, medications, allergies, and the results of the unnecessary pregnancy test.4 I praised Candi for her achievement and tried to interact with Danielle. I was more calm and relaxed once the IV56 was set up. Danielle said the change in my demeanor after the IV was very noticeable.7 She wasn’t really thrilled, at first, with my mom saying that she was there to mock me while my IV got set up, but my mom explained why she does that.8 But she didn’t need to. 

One big fear down, a couple more to go. 

The antibiotic they used was clindamycin. It’s amazing how my old acne medicine is one of the few antibiotics my atopy-prone body has not declared war on. I guess it’s because it’s not really used that often. Danielle said that typically they’ll give Keflex9 and, if the person is allergic, they’ll use penicillin.10 Or the other way around?  Having a Keflex allergy while having a penicillin allergy isn’t exactly normal, despite their being related. It probably happened in me because of genetics11 and because my first antibiotic allergy was Ceclor, which is related to both Keflex & penicillin somehow. Anyway, Danielle made sure I was not allergic to clindamycin before they officially hooked it up. 

When the anesthesiologist came in, he insinuated that I wasn’t allergic to the medicines I listed. That changed as I explained the reactions.  Each person who reviewed my list, including him, did not understand why I listed my orange juice allergy12 under the section for food allergies. Hmm. I wonder why a person would list a food allergy as a food allergy. 

Maybe because:

Oranges and other fruits contain proteins that are chemically similar to pollen; eating these can cause itching and irritation of the mouth in certain people, many of whom also happen to be allergic to pollen… (via Newsweek)

That article points out that orange juice allergies can be worse for asthmatics because of our already inflamed airways. There are also some who believe that orange juice allergies can be a result of salicylate (aspirin-relatives) allergies/sensitivities.13 Basically, this orange juice allergy stuff is serious as fuck. 
But I digress…again. 

Before taking me to the OR, I was given a dose or so of Versed, aka midazolam.14 In some people,15 there is an unexpected reaction16 and medical professionals can go into denial mode over it because it is pretty much the opposite of what the drug is meant for.

Eventually, I was rolled off to the OR. Special latex precautions were taken, which was expected, and was the reason my surgery took place at the hospital instead of an outpatient surgery facility. I think I was the last surgery on the schedule and there may have been a good reason. The anesthesiology team consisted of the anesthesiologists ans 2 nurse anesthetists—the 3 were monitoring me for allergic/adverse reactions. Seriously. The patient board in the OR also mentioned I had multiple allergy issues.17

Eventually, the sleepy-time doc gave me the propofol and I zonked out. My parents said the surgery took five minutes and that my orthopedist, who I saw one time today…before the surgery, said my meniscus and fat pad were fine, but that the debris in my patella was made of bone flakes and that I definitely have arthritis. He also said I need to start exercising and trying to lose weight. I got pissed when he said that because this particular doctor always dismisses that I do exercise. I told him with a previous injury that I was injured while exercising. I told him this issue became noticeable while exercising.

As for trying to lose weight?

  
I’ve lost around 27% of the weight I wanted to lose. I’ve lost 32% of what I need to lose to reach a healthy weight. I would have lost more if my knee hadn’t been fucked up since Spring. Being fat doesn’t mean I should be dismissed like this. 

Pretending like all of this is due to weight and weight alone is also bullshit.18 I’m having a hard time believing that the meniscus and fat pad1920 are totally okay, given the symptoms. I just think he’s used this to tell me that he thinks poorly of me for my weight. And that’s pathetic and superficial crap. If he’d ever bothered to listen to me, he could have come to that conclusion on his own. 

After surgery, I started talking like crazy21 to the nurses in the recovery section, including Danielle, who was literally keeping watch over me afterward. She got so busy talking to me that she almost forgot to give me a dose of Fentanyl.22 And she almost forgot once again with my Demerol dose. At first, I wondered if she wanted to give me the pain relief injections because she thought it would shut me up. It just made me worse. It wasn’t long before I was getting discharged; we did have to wait for a drug-induced23 vertigo spell to pass. 

I also had the lovely experience of a different nurse doing a bad job of removing my IV. She was trying to take the tape off without tearing my skin. I would be grateful for that effort except that, while doing that, she ended up removing the catheter24 rather violently. It started bleeding. A lot. As I mentioned earlier on Instagram, removing an IV so violently is not only painful and dangerous to people with conditions like Ehlers-Danlos or any other chronic health issues, it is painful and dangerous for able-bodied, healthy folks, too. And if you factor in the time it takes to stop the bleeding, taking it out that way costs you more time. Be careful with IVs.

Soooo…

As you have probably figured out, the IV bleeding finally stopped & it didn’t kill me. Yay!

Anyway, it’s been several hours since I got home. I’m still pretty wired and may be so for several days to come. 


  1. I chose to avoid going to the bathroom upon waking to make sure I could take the test. If I hadn’t, they might have refused to do the surgery. They almost refused my endoscopy-colonoscopy procedures a few years ago because I didn’t have enough urine to take the test. Part of that lack of pee was from the dehydration that resulted from prep. 

  2. Candi 

  3. Danielle 

  4. Danielle apologized for that multiple times, especially since she knew I was taking hormonal birth control. It’s funny how the nurses who wanted dehydrated, virginal me to take the pregnancy test a few years ago for my endoscopy-colonoscopy combo didn’t apologize for demanding the test. The one who did when I had my D&C and hysteroscopy did. 

  5. Candi gave me lidocaine to ease some pain, which isn’t the greatest to use in Ehlers-Danlos patients. 

  6. The IV itaelf was quite painful. 

  7. She understood what it was like to be a hard stick. The last time she had an IV, it took ten times. I almost asked her if she was some long-lost cousin. 

  8. I’ve repeatedly mentioned the hard stick issue. I used to, as a small child, get blood work done a lot and had IVs started, and there were always vein issues—including when, as a preschooler, I had blood work done using a vein in my foot. I also was admitted to the hospital for asthma issues and the nurses setting up my IV wouldn’t let my mom come in while they did it. I kicked and screamed and cried and they just were mocking and not compassionate. I remember that as one of the few truly dissociative moments I’ve ever experienced. As a result, I was terrified of needles until I was a teenager. My mom—who I get my bad veins from, so she’s got an idea of how terrifying and painful vein stuff can be—could keep me calm by telling jokes. The calmer I was, the easier it was to hit the veins. It’s amazing how that works. 

  9. My latest antibiotic allergy. 

  10. It was my fourth antibiotic allergy. 

  11. Thanks, Nana & Mama. They had allergies to antibiotics, pain killers, and anesthetics, too. 

  12. I vomit, have uncontrollable stomach pains, and have asthma flare ups whenever I ingest it. This even happens when it’s an ingredient in a dish. I have to check ingredient lists closely for it & caffeine, or related products. 

  13. Guess what over the counter pain medication Nana has an anaphylactic reaction to when she takes it?! Even in the form of cream for arthritic joints. 

  14. Midazolam is a benzodiazepine that is used in lethal injections to calm the convicted individual so they don’t panic as they are exposed to other drugs that stop their hearts or suppress their breathing. 

  15. Children, some death row inmates who were executed in the recent past, and me… 

  16. They don’t fall asleep or stay asleep; hyperactivity & its short-term sedative effect is actually well-documented. 

  17. There were also my bright protocol bracelets. 

  18. Yes, my weight contributes. That’s part of why I was trying to exercise. 

  19. He’s never acknowledged that the MRI wasn’t the “nothing is wrong here” situation he has suggested. Maybe he doesn’t realize I’ve seen the results. 

  20. It was swollen enough yesterday that there was a lump right over it. 

  21. I think if I ever imbibed, I would be a chatty drunk. More specifically, a chatty, giggly drunk. Alas, I shall never know, unless you count my drunk-like state when dehydrated and my intoxicated state on anesthetics and pain killers. 👋🏻, booze, I think we could have had some fun, bur jt apparently wasn’t meant to be. 

  22. She told me I’d already had two other doses of it. 

  23. There were quite a few meds in my system. 

  24. The tubing that goes under the skin & into the vein that connects it to the IV. 

Daily Debate: Sept. 5, 2015

What is your opinion on Fitspo and Thinspo? Is there a difference? Is it a safe way to encourage yourself or others to lead healthy lifestyles? Or does it encourage eating disorders?

My first entry

Wow. This is my first entry in my new diary. I have a diary offline that I’ll keep my juiciest secrets in, but this one is for the not so juicy stuff.

So right now, life sucks. I mean, my friends are great, but I’m not exactly the happiest chickadee in the world. It seems like everytime I get my life under control, I suddenly lose control of it. I guess that’s part of the psych problems I have. I have OCD, Depression, Panic Disorder, Anxiety problems, and I cut myself. I also have binge eating disorder, which really makes me feel like an ugly cow.

So I guess I need to let you know about me. Well, I’m 17 and from Alabama. I love *NSYNC. I have a foster brother “E”. I live with him and my parents. I dropped out of school in January because of my health problems, but I plan on going to college and becoming a psychologist. I want to help teenagers who are going through some of the same problems as I am. So I guess that’s all I can think of for now.