Return to Self Update: Back Injury Taken Care Of and Possible Med Changes in the Future

Boy, do I have an update.

Back in July I somehow messed up my back, again, the resolution of which took six months. I’ve just had surgery and I’m in recovery now. Which is why I haven’t posted much, I was in a ton of pain, nearly intolerable, I even had to drop out of the fall semester. Also, a lot of the content which I have written that I really liked I’ve submitted for formal publications. I’ve just had another publication that should be out in about a month (which I’m thrilled about)! An article that I am particularly proud of has been rejected numerous times. I’ll be trying two other magazines before I upload it here. Oh also, I went to NYC, ON MY OWN. It was an amazing, eye-opening, get-out-of-your-comfort-zone experience, I’m planning a full post on the trip.

Plus, I think I’m going to go full-on and write a book.

I’ve signed up for classes again this spring, but I’m sticking with online ones so I can really take care of myself. Seroquel had caused me to gain more than half my body weight, I went from about I went from 120lbs-185lbs. My goal for the new year is going to take the leap and try a different antipsychotic, something I’ve spoken at length with my doctor about. We also plan to add Metformin to aid in weight loss once I make the switch. I switched from Lexapro to Wellbutrin because of sexual dysfunction (yes, I said it!) and weight gain but it wasn’t enough on its own. We had to wait for my surgery before making these changes, now that it’s over I plan on starting the process by the end of December. I don’t expect to lose all the weight, but my goal is about forty to fifty pounds once I add exercise (I have an exercise bike that needs some use). This back injury really, really derailed my plans. I’m looking forward to getting back to myself, and back to my life.

If you ever want to know more about my personal life, I have an Instagram. If you have one too feel free to follow me @schizo_affected

People with Schizophrenia Need More than the #endthestigma Movement

               I write a lot about psychosis. I write a lot about schizophrenia and schizoaffective disorder in particular because as someone with schizoaffective disorder, I have dealt first hand with discrimination. I prefer to call it what it is. I’m fine with people wanting to ‘#endthestigma’ because that’s certainly better than no advocacy at all. But let’s call it what it is, discrimination-not stigma.  

           It wasn’t stigma that encouraged an admissions counselor to suggest I was unsafe on campus simply because I had been diagnosed with schizophrenia. To discourage me to return to school because of the idea that people with schizophrenia are inherently dangerous wasn’t stigma, it was discrimination. To discourage people with schizophrenia from continuing to achieve their goals is discrimination. It’s discrimination and unfair treatment when you’re told your life is over after you’ve been diagnosed. When a third of all people shot and killed by police have a disability, many of whom have a serious brain illness like schizophrenia, do you think it’s stigma I fear? What I fear is being shot and killed by a police officer who isn’t trained in handling a mental health crisis. But police officer’s don’t use deadly force because of stigma, being shot and killed by police is discrimination. When the president of the county I live in, like so many people before him, uses psychosis as a scapegoat for mass shootings and violence, that’s discrimination. The fear at the back of my throat when I tell someone for the first time that I have schizophrenia and bipolar disorder isn’t because I’m afraid of stigma, because stigma can often be worked through by proper education and conversation. I’m afraid that that person won’t ever talk to me again, or that they’ll become afraid of me. That they’ll act discriminatorily. While correct education about schizophrenia is important, it’s going to take more than that, a lot more. How can I education people when some people don’t even want to have a conversation with someone who has schizophrenia because they’re scared?

           When I choose to be open about schizophrenia, psychosis, or schizoaffective disorder, it’s because 11% of all people who are homeless have schizophrenia and most likely you aren’t going out to talk to them. I do it because we don’t talk about the fact that people schizophrenia die and an average of 14 years earlier than the rest of the population. Because there are more people in jail (24% jail inmates and 15% of state prisoners) receiving treatment than there are in hospitals. Because treating schizophrenia and too often, schizophrenia becomes a disease people have to fight alone. But what we really, really need is support and love. Because people don’t understand schizophrenia and don’t know how to support someone with the disease. I do it because people forget that people with schizophrenia are people not just schizophrenics.

           The ‘stigma’ surrounding schizophrenia is far-reaching. It’s not just people wondering why you act weird sometimes, or what you’re so tired, it’s people getting shot and killed by police, people homeless and untreated, people in jail who could’ve avoided incarceration by proper treatment in the first place, it’s people being afraid to be around you, people thinking you’re a violent criminal when you’re actually just a person. 

           You’re just a person who happens to have schizophrenia. 

           You’re a person. You are. No matter how awful people make you feel for having a disease far beyond your control. And your life isn’t over if you don’t want it to be. Just like any life-changing illness, you’ll have to adapt, but that’s, historically what humans have been best at. 1.1% of the world’s population has schizophrenia ( 21 million people worldwide). Just remember you aren’t alone, and things are starting to change. There’s more research now than ever, into better treatment, better preventive care, and understanding how to create better support networks. If you look in the right places and seek out understanding clinicians, instead of being discouraged from pursuing your goals, you’ll find that you’re encouraged and supported to continue; to fight. With this growing movement surrounding mental health advocacy, there are more people open about having schizophrenia than there has ever been. And we’re all working together to empower each other. Stay strong, keep fighting, don’t give up. 

 

Deadly Use of Force against people with Disabilities 

The Reclassify Schizophrenia Campaign (I’m part of this!)

Anti-Discrimination Resources from SARDAA 

Students with Schizophrenia (psychosis empowerment movement)

Schizophrenia Anonymous Locations

Support for Young People with Psychosis-Strong 365

Psychosis 101

Also! I have a whole ton of resources right here on my blog!! Just click the subheadings!

A Return to Self: the plan

It’s been a long time since I updated this blog with anything personal. I’ve been busy with school, I had an internship, then a reemerging back problem forced me to leave for the semester and quite possibly I will need a second surgery. Whether that ends up being a second discectomy or a spinal fusion I don’t yet know. I left school two or three, weeks ago. I’ve been spending a lot of time at home, by myself with my cats, considering many things.

I’ve been thinking a lot about myself. I’ve changed a lot in the last four or so years. When I think back on it now, much of this change has to do with adherence to antipsychotic medication. My brain likes to tell me that I was better before Seroquel. But in what way? I weighed less, which is a side effect many hundreds of people taking antipsychotics face. I was more spiritual, and I wonder if this wasn’t the psychosis that made feel closer to whatever it was that I believed in at the time. Was I better without antipsychotics? Or was I just different? I was surely less stable. I was in the hospital every five or six months. I had attempted suicide twice. I self-harmed regularly. I wasn’t better without them. So why do I feel that way?

Is it just my illness calling out to me from the back of my head? Maybe I’m only yearning for the positive parts of my prior self?

I remember the constant hum of words moving through me. Constantly, constantly rushing through me, like the current of a river and I was the river. But that was just mania, wasn’t it? And my art welling up like ground water in a flood. And I was the flood. But that was just depression, wasn’t it? And my huge, deformed reality, populated by visons and voices and thoughts that came and went without making any sense. Disorganization like the tide of the ocean, pulled by the moon. But I was the moon commanding an ocean of illness below me like an orchestra of auditory hallucinations. But that was just schizoaffective disorder, commanding me like a marionette who didn’t know she was a puppet in the first place.

Yet, I yearn for that chemical connectedness to spirituality, for a healthier body, for a wild and wonderful mind brimming like a forgotten tea kettle on the stove.

But which person is me? Am I me now, was I me then? Have I always been me? Or do I exist somewhere in-between both versions of myself? Not sick, but still creative, still active, still writing? How do I have both? A stable me who is on my meds but healthy, flexible, still gasping for breath at the beauty of the universe. How do I separate what was my illness from what parts are just me? I refuse to believe that I simply am my illness, or that it is simply me. There has to exist a middle ground. Where that middle ground is, I don’t know.

But I have decided to embark on that journey, on a return to self.

On October 7th, I will see my neurosurgeon again. We will discuss surgery, and perhaps I will go under the knife to ease the pain which has settled onto my sciatic nerve. After this, if I require surgery, I will commit to this journey to return to self. If I have this surgery then I will have to wait to start excerising until after recovery, other than this aspect, it’s full steam ahead.

I have, I think, identified the aspects of my old self which I want to reintegrate into my life. It’s going to be a challenge and so I will write the journey down and share it with everyone as I go.

These are the things I need to change:

  1. I will stop consuming alcohol.  
  2. I will read more poetry.
  3. I will mediate once a day.
  4. I will return to a vegetarian lifestyle and eat healthier.
  5. I will exercise every day.  
  6. I will embark to reconnect with yoga, starting again with beginner’s yoga.
  7. I will continue to take my prescribed medication.
  8. I will practice more self-care, even when my illness pushes for apathy.

Join me and wish me luck, as I return to a version of myself that has never truly existed, the truely stable self. The version of myself which I think is best. The person who takes her medication but resists the side effects. I must try to love myself harder and cultive true, honest respect for myself and my body. 

 

Having Identified the Cause of Negative Symptoms in Schizophrenia, Researchers Can Now Treat Them

A breakdown in the correct circuitry between the prefrontal cortex and the cerebellum is likely to blame for the negative symptoms of schizophrenia. According to a new study from the Beth Israel Deaconess Medical Center, doctors can now treat negative symptoms directly, this is something traditional antipsychotic treatment (which treats only positive symptoms) has never been able to do. This is a huge breakthrough for people with schizophrenia. People tend to see schizophrenia through one lense, assuming that the only symptoms are hallucinations, delusions, and paranoia. This certainly isn’t true for anyone. Some people with schizophrenia will have only hallucinations while others might have only delusions (with no hallucinatory symptomology). But even this is flawed because this view of schizophrenia leaves out all negative symptoms like social isolation, inability to feel happiness, flat affect, and total lack of motivation and many, many more. Many people attribute these symptoms as side effects of strong medications, this would be incorrect. While antipsychotics can, and often do, have side effects, negative symptoms stand on their own.

Negative symptoms are debilitating, for some people just as much or more so than positive symptoms. We tend to over-associate positive symptoms with the disease, and as a repercussion, many of the trial treatments, and much of the research tend to sound only in the direction of treat the one type of symptomology. This mindset leaves an entire, exhausting, aspect of schizophrenia untreated.

So, what is most important about this study, is that researchers and doctors are finally pushing to uncover and treat the source of negative symptoms. If this type of treatment was approved it would bring relief to many, even if it doesn’t work for everyone.

Negative Symptoms: Apathy, absent, blunted or emotional responses, reductions in speech, social withdrawal, trouble paying attention, inability to feel pleasure, sexual problems (near to total lack of libido), lethargy, lack of facial expression, talking very little.

Positive Symptoms: Hallucinations (visual, auditory, tactile, olfactory), delusions, thought disorders(illogical thinking), movement disorders(repetitive movements, or a complete lack of movement or speech).

Every person’s experience with schizophrenia is different and varies greatly in severity. While some people may have many of these symptoms, others may have less. Additionally, all of these symptoms run on their own spectrum (from very severe to less severe versions of the same symptom).

Beth Israel Deaconess Medical Center. (2019, January 30). Researchers ID, treat faulty brain circuitry underlying symptoms of schizophrenia: Non-invasive brain stimulation alleviates the chronic, treatment-resistant symptoms of schizophrenia. ScienceDaily. Retrieved June 9, 2019 from http://www.sciencedaily.com/releases/2019/01/190130075801.htm

 

 

Patients with Schizophrenia and/or Epilepsy are dying too young

A recently published study suggests a strikingly high mortality rate for people schizophrenia, epilepsy, or the combination of both illnesses. Many of whom died between 25 and 50. In SARDAA’s campaign for the reclassification of schizophrenia from mental illness to a neurological one, they also present supporting information that, “There are published studies suggesting that patients with schizophrenia die on average 28.5 years sooner than other Americans…Unfortunately, lack of treatment leads to severe negative health outcomes. If correct, this means that individuals with schizophrenia have a life expectancy similar to that of Sub-Saharan Africa. Additionally, co-occurring medical conditions, such as heart disease, liver disease, and diabetes, contribute to the higher premature mortality rate among individuals with schizophrenia. Possible reasons for this excess early mortality are increased rates of these medical conditions and under-detection and under-treatment of them” (SARDAA’s reclassification letter to the CDC).

This study specifically says that “The mortality rate for these subjects at age fifty was 3.1 percent for people who did not suffer from epilepsy and schizophrenia; 10.7 percent for people with epilepsy; 17.4 percent for people with schizophrenia; and 27.2 percent for people with both epilepsy and schizophrenia.”

With more than one published study pointing to an epidemic amount of younger people dying from treatable conditions, it’s impossible to dismiss. Schizophrenia has too long been stigmatized and seen as an impossible to treat condition, not unlike epilepsy. This stigmatization should be viewed for what it is, discrimination. Discrimination which is leading many people to early deaths with little consideration from medical professionals. People with schizophrenia have done nothing to deserve to die so much earlier than the general population, and yet, we are. We aren’t dying from schizophrenia (not directly, although death by suicide will claim about 15% of people with schizophrenia). We are dying from diseases which are treatable, curable, and reversible. Although many of these diseases are bought on by poor lifestyle choices, they are still treatable. Physicians choose not to treat people with schizophrenia simply because they have schizophrenia. Physicians choose not to educate and work with patients on healthier lifestyles simply because they have schizophrenia. People with schizophrenia are often over-medicated simply for having schizophrenia, physicians are choosing not to work with patients on correct medication dosing SIMPLY FOR HAVING SCHIZOPHRENIA. 

This isn’t stigma, this is discrimination.

This isn’t a misunderstanding, this is the conscious choice not to educate and understand schizophrenia. 

WE CAN DO BETTER. 

WE HAVE TO DO BETTER. 

 

 

  1. Katrine M. Andersen, Liselotte V. Petersen, Mogens Vestergaard, Carsten B. Pedersen, Jakob Christensen. Premature mortality in persons with epilepsy and schizophrenia: A population‐based nationwide cohort studyEpilepsia, 2019; DOI: 10.1111/epi.15158
  2. SUPPORT THE RECLASSIFICATION OF SCHIZOPHRENIA 
  3. Schizophrenia and death by suicide.