Physical and Mental Health



I could say the title is about Nigel Farage’s ode to xenophobia or, as it is more commonly known, UK’s EU Referendum or Donald Trump’s ode to xenophobia, better knows as his candidacy for president—and it could honestly apply to both or either—but the title actually refers to something I did today.1 I hadn’t been to the pool in a while. My family has been a bit busy with Nana’s nursing home situation, dad’s potential for dementia, & other issues that are a tad more pressing than exercising in a pool. Unfortunately, not going to the pool tends to reinforce my anxiety issues, which makes it harder on me emotionally to leave the house. Basically, as not-pressing as it is, it’s still important. So today I went and… I TALKED TO SIX PEOPLE.  Six.  Not one or two,2 but six.  And I wasn’t related to any of them, nor had I had any real contact with any of them before. Even though a few have been in the pool when I’ve been there, I hadn’t really tried talking to them. But today I did, and one of the ladies actually came back to talk to me (with her husband) afterward. It was just…wow. And, in most of the cases, the first person to make the attempt at conversation was me. So this attempt at acting like a social being was even more significant.  My family was proud. My therapist will be proud.3 I’m proud.  Fist bumps and happy dances for the introverted, agoraphobic, socially phobic ginger.  Photo credit: Fouquier ॐ via Visualhunt.com / CC BY-NC-ND But, seriously, what the fuck, UK? Did you really need to out-crazy Trump & the Republicans? Congratulations, you did it. I just hope your fuckery doesn’t get him elected here. No, that’s not me being paranoid, that’s me being realistic. Your dumbfuckery is so not what we need right now. Kindly go fuck yourselves. ↩or three or four or five ↩She’s happy when I manage one a month, so six in a day will thrill her. ↩

Nigh is the End



The Long Shadow of Small Ghosts: Murder and Memory in an American City by Laura Tillman My rating: 3 of 5 stars I don’t know how to explain my feelings toward this book. It is an extremely compelling story, but the writing quality is poor. There seemed to be no real outline or backbone to it. The purple prose only highlighted this flaw, as did the repetition of unimportant things and the lack of refreshers given for details that seemed more important. If all you knew about the case was the manner in which Julissa, John Stephon, and Mary Jane died, then it would seem impossible to feel bad for John Allen Rubio and Angela Camacho, but what happened to them within the justice system is awful for other reasons. This is a case where a man with a severe mental illness (paranoid schizophrenia) and an intellectual disability (IQ in the low 70s) and a woman who had a shared psychosis with this man because of her own intellectual disability (IQ in the 50s) end up imprisoned, and, for him, end up on death row, but the writer is busy talking about superstitions & personal fears. It’s almost like she doesn’t completely perceive the gravity of the situation, the level of injustice that’s going on. As lovely as it is to learn about regional cultural beliefs, I was more concerned about the fact that this man who should be in a hospital will probably face lethal injection. The writer could only view this as horrible once she met Mr. Rubio, but it seems like anyone with a basic sense of compassion would figure out after learning about his background. Instead, she was oblivious to it, which made her seem callous. It made the whole book feel callous. Also, the stalking of Ms. Camacho’s family was a bit disturbing. I understand she felt that she needed to hear from them for her newspaper article and her book, but her behavior was quite creepy. I’m surprised that they didn’t issue a restraining order after the second or third time she showed up outside the woman’s front door. The writing honestly reminded me of what you’d find in an essay by a bored, uninformed student who waited until the last minute to do an assignment. I have a hard time believing that this is something the writer was encouraged to get published, at least in its current form. I have no doubt that she has talent, but the fixations on pointless details within the work are distracting and annoying. I wish she had explained more about Rubio’s mental health than how a superstitious grandmother convinced her to throw away a perfectly good pair of tennis shoes. This wasn’t her memoir. This wasn’t even a memoir for the building. It was an unfocused work of nonfiction that was rather disappointing. View all my reviews

Review: The Long Shadow of Small Ghosts: Murder and Memory ...


via Instagram “Shortly after John’s arrest, and his diagnosis of paranoid schizophrenia, he was put on several medications. He told me he was taking Prozac, for depression, Benadryl, and Risperdal, an antipsychotic. This made it hard for me to know what an unmedicated John sounded like. He said he had occasional visions, what some might call hallucinations, but these days he tried to ignore them, a self-preservation technique schizophrenics sometimes use to deal with an illness that can be manageable but is never curable. He said that the two years following the crimes, the visions were much worse, and his sincere wish was to die and join his children in heaven. “I did not get the sense that John was trying to manipulate me, but I’m not a psychiatrist.” How is it ethical or moral to execute a man with severe mental health issues? How is it ethical to put him in a prison and not a hospital setting?

The man described is on death row, which bothers me.



1
I’ve had clinical issues with depression for 24 years now. I’ve been in and out of therapy, mostly in, for all of that time. I’ve been medicated for it for the better part of 19 of those years. I know the symptoms. I understand the importance of my medicine. I do everything I can to not be in an acute state, but it still happens. It doesn’t help that my body has always had a love-hate relationship with the only antidepressant I’ve had a significant positive reaction to. Effexor is my savior and my torturer. It is fickle. It is capable of a level of pettiness that would cause Gossip Girl characters to screech obscenities. So when I legitimately forgot to take it until nine hours after it was due, my nervous system decided to revolt. Two hours before I remembered, I was crying over a television show being watched in another room. My eyes were overwhelmed by light. My ears couldn’t handle sound. I felt tired. I felt scared. I felt like my life was meaningless and that I served no real purpose in the world. I felt like I should just go ahead and die. I’m lucky. The years of therapy and medicine, of knowing what my disease is like, of knowing why grieving has increased my risk of suicide for a while,1 and of knowing that the disease was lying to me made me start thinking: why do I feel like this right now? Because I have the tools & skills to do so, I started figuring out what happened.  When I fixed my breakfast, I didn’t take my Effexor because I was trying to avoid taking any of a new brand of Fish Oil supplements.2 I actually missed several medications & supplements while avoiding that one thing. And that sent me into a tailspin.  That’s all it takes.  One mistake.  One bad decision.  Depression takes advantage of those mistakes and decisions. It is opportunist, but with the right tools, you can fight back. And if it’s a chronic issue, like mine, that will just be one battle, or maybe just a skirmish, in a lifelong war with it. But I’m willing to fight because I prefer it to the alternative.  Photo via Visualhunt.com Especially after a brief Facebook encounter where someone decided to discuss a graphic rumor of how she had died. ↩It’s too fishy. ↩

This Is What Depression Feels Like 


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.  at forgetting ↩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. ↩16 points of a 23 point list ↩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. ↩Not a Disney movie title adjective, though it could be. ↩A girl has no name. ↩I never could, unless I did them accidentally while falling. ↩

Bad Positives



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

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


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 via IFTTT

Dear Amanda Lauren



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. 

How We Remember 


“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 […]

Defined Parameters