Invega Experiments on Keith Torkelson MS

 Invega Experiments on Keith Torkelson MS

Feature Image [MIKEL R]

Symptomatic

Abstract – Executive Summary
Purpose of this study

The primary purpose of this study is to help others and us determine that Invega Sustenna (IS) is not indicated.  Our presenting problems are complicated with IS.  Our primary problems are Anxiety and a Sleep Disorder.  Now we have adverse reactions to IS to deal with.  For the life of us until we read up on IS we could not figure what was causing our symptoms. 

Results up Front - Adverse Reactions and Side Effects 
Most bothersome effects associated with Invega

 

Side Effects - Real World Evidence

In order to get a thorough understanding of what Invega Sustenna (IS) may be doing to us we apply the Evidenced Based Practice of self-assessment.  Some say self-assessment yields Real World Evidence (RWE).  We created a few assessment tools for this study.

Action Plan

Our plan is to summarize this material in a manner that it is easy to present to our psychiatrist Dr. Bera.  Unlike Dr. Bum Soo Lee who took us off (circa 2012) cold-turkey from IS doctor Bera has started to titrate us down.  Our next appointment is in August of 2024.

When is INVEGA Not Indicated?

”Basically INVEGA or related are not a good choice when the primary major tranquilizer is needed in a rhythmic nature – for sleep (when somnolence is desired) – to treat anxiety - and extrapyramidal side effects are not acceptable.”

Cost and Benefit

We had been stable on Clozapine since 2012.  The cost of Invega Sustenna (IS) is exorbitant in terms of money.  As far as cost is concerned IS should be at least 25 times better for us than Clozapine.  IS is also costly for us as far and adverse reactions are concerned.  It is very likely that IS is impeding our recovery.  This document includes part of our Mental Illness History (MIH).

 

Introduction – Back Story

Assessing Invega Efficacy – Compare with actual data

Efficacy for Schizoaffective Disorder Treatment Medication - INVEGA

Significant improvement in Positive and Negative Syndrome Scale (PANSS) total scores9

INVEGA® (3 mg, 6 mg, 9 mg, 12 mg) demonstrated significant improvements in PANSS total scores vs placebo as monotherapy (P<0.001) and as adjunctive therapy in two 6-week pivotal studies (P=0.014)*†

PANSS Scores for INVEGA®

Numerical improvement in Young Mania Rating Score (YMRS) In pivotal trials, numerical improvement in YMRS total score was larger with INVEGA® compared to placebo*†  INVEGA® is not indicated for the treatment of manic episodes in bipolar I disorder

YMRS Scores for INVEGA®

Numerical improvement in Hamilton Depression Rating Scale (HAM-D-21)9 In pivotal trials, numerical improvement in HAM-D-21 total score was larger with INVEGA® compared to placebo*†  INVEGA® is not indicated for treatment of depressive episodes in Major Depressive Disorder

HAM-D-21 Scores for INVEGA®

[STAYED]

Assessments in Context of Invega

YMRS Young Mania Rating Score   
PANSS Positive and Negative Syndrome Scale   
BARS Barnes Akathisia Rating Scale

Introduction

Assessing Invega Risks

Paliperidone - Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Paliperidone

Paliperidone - Wikipedia

“Paliperidone, sold under the brand name Invega among others, is an atypical antipsychotic.  It is mainly used to treat schizophrenia and schizoaffective disorder. It is marketed by Janssen Pharmaceuticals.  Paliperidone like its parent compound functions as an inverse agonist at 5-HT2A. Paliperidone is also active by acting as an antagonist of the alpha 1 and alpha 2 adrenergic receptors as well as the H1 histaminergic receptors. ”

When Invega is not indicated

Basically Invega or relared are not a good choice when the primary major tranquilizer is needed inn a rhythmic nature for sleep (when somnolence is desired) to treat anxiety – and extrapyramidal side effects are not acceptable.

Side Effects - Very Common (>10% incidence)

Headache

Somnolence (causes less sedation than most atypical antipsychotics)

Insomnia

Hyperprolactinaemia (Only if it interferes with intimacy)

Side Effects - Common (1-10% incidence)

Extrapyramidal side effects (EPSE)

“(EPSE; e.g. dystonia, akathisia, muscle rigidity, Parkinsonism. It appears to produce similar EPSE to risperidone, asenapine and ziprasidone and more EPSE than olanzapine, clozapine, aripiprazole, quetiapine, amisulpride and sertindole.”

Weight gain

Weight gain (tends to produce a moderate degree of weight gain, possibly related to its potent blockade of the 5-HT2C receptor)

Associated Document

10_Profile_17102903_List_of_Psychiatrists

Introduction - History Taking Table

The following is a table that lists most of our psychiatrists, their working diagnoses, and how well they took a history.  Doctor Dobos at Kaiser did the best with history taking.  Our current treatment is built off of the progress each doctor made with us.  The table is organized alphabetical rather than chronological.

 Doctor Cipher

Last Reviewed: 20240729-M: UD = Undocumented

Introduction – History Taking

How is it that a searching history matters?

Since our first episode in 1989 we have been given multiple diagnoses.  A good history such as Dr. Dobos offered would demonstrate that we currently suffer Anxiety with a Sleep Disorder.  If our coping is exhausted a crisis ensues that can lead to suffering psychosis.  If the doctor can’t see our diagnosis clearly we often are served inappropriately.  This is why we assess ourselves. Yet few doctors really ask for the results of our assessments.

Introduction - Legal - 2024 LPS Conservatorship

It occurred to us that we could be on LPS Conservatorship.  None of the places we stayed during 2024 started a temporary conservatorship with us.  This includes: Aliso Ridge, Global & Leisure.  The Powers that Be must feel we are in good enough shape to advocate for ourselves.  This includes exercising our “Right to Refuse” one or more treatments.  The last thing we want to do is refuse Invega.  It would tarnish our association with Dr. Bera.

LPS (Mental Health) Conservatorship | County of Santa Clara

Superior Court of California | County of Santa Clara (.gov)

“A mental health (LPS) conservatorship makes one adult (called the conservator) responsible for a mentally ill adult (called the conservatee). These conservatorships are only for adults with mental illnesses listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM).”

Introduction - Super Lawyers – Right to Refuse 

Undesirable Treatment – Right to Refuse

“Competent adults have the constitutional right to privacy, which by court rulings has been interpreted to include the right to refuse medical treatments. Adults also have the protections of tort law, in that any unwanted medical procedure is considered an unwanted touch, or even assault or battery.” Jan 26, 2023

Introduction - Invega Trial – Revisited

Back in 2012 once again we were having trouble getting sleep.  Our roommate Karl was going berserk 24/7.  We had relapsed to drinking beer.  Our program Brand New Day had placed us in the Lighthouse Residential Treatment Program (RTP).  Things were looking up until the staff psychiatrist, Dr. Daniels, decided we needed something different than Clozapine.  She persuaded us and put us on Invega. It was an utter disaster and landed us in the hospital.  In the hospital we linked with Dr. Bum Soo Lee (BSL).  Our partnership with BSL would last more than the next five years.  When he first began treating us we reconsidered Invega.  He decided to discontinue Invega and resume with Clozapine.

Introduction - Legacy Papers

The following is a ListerLista about our work focusing on Clozapine.  We find that Clozapine is a rigorous medication to manage.  Even though it is challenging on a monthly basis Clozapine has been good to us ever since doctor Singh started us on it back in 2007.  Our rate of hospitalization has gone down to two episodes in twelve years while on Clozapine (2012 & 2024).  Below are things we got to consider with respect to being a long-term Clozapine patient.  In 2024 being off Clozapine had no benefits only costs.

Clozapine…

15_Clozapine_Publications_Work_Done_21072704_Notes

28 Day Cycle
Alternatives
CBC Registry
Charter
Clozapine Algorithm
Cost Containment
Determination
Gap Error
Gap Intervention
Inspiration
Med Management
Rate Gilbert
Ref – Clozapine Determination
Side Effects
Situation for Family
Work Done

Introduction - Risks - Risperdal and Invega Overview | Recall Report

Dangerous Drugs and Products

Risperdal and Invega are prescription antipsychotic medications that have been linked to increased risks of developing serious medical issues.

What are the evidences of mental health problems?

“Significant tiredness, low energy or problems sleeping. Detachment from reality (delusions), paranoia or hallucinations. Inability to cope with daily problems or stress. Trouble understanding and relating to situations and to people.” Dec 13, 2022

Results - 3.0 - Experimental Bunny Rabbit – Invega

Medication List & Outcomes - Most if not all

Reference Document

10_BMB_Psychotropics_16121602_Experiments V2024

Results – The Table

Since our first treatment back in 1989 we have been on some odd twenty-eight (28) medications.  More than six (6) of these have been anti-psychotics.  The anti-psychotic that worked and works best is Clozapine.  Seroquel and Serzone worked fairly well also.  The two that worked the worst were Haldol and Navane.  Risperidone like Invega have little or no beneficial effect. Organized Alphabetical Rather Chronological.

Table – Master Medications List – Part I of II

E# = Experiment Number (Alphabetical)
Pass = Effective
RYNT = Requested yet Not Tried
TE = Too Expensive

Results - Assessments

For this paper and in preparation for our next appointment in August 2024 we employ about ten (10) assessments.  The most important ones focus on Invega and Clozapine.  We wrote several assessments ourself.

Results - How is it we are Vulnerable?
Hospital Readmission And Social Risk Factors
What is a factor that increases the risk for re-hospitalization?

“When the authors adjusted for demographic and clinical factors, four of the seven selected social factors were significantly associated with increased readmission risk.”

Characteristics of 30-Day All-Cause Hospital Readmissions

What is the rate of re-hospitalization for 30 days?

“Source: Agency for Healthcare Research and Quality (AHRQ), Healthcare Cost and Utilization Project (HCUP), Nationwide Readmissions Database (NRD), 2016-2020. The 30-day all-cause readmission rate for all hospital stays remained stable at 13.9 per 100 index admissions from 2016 to 2020.” Sep 22, 2023

Results - Adherence

“In medicine, patient compliance describes the degree to which a patient correctly follows medical advice. Most commonly, it refers to medication or drug compliance, but it can also apply to other situations such as medical device use, self-care, self-directed exercises, or therapy sessions.”

 

Results

Real World Evidence - Assessment

Assessment is an Evidenced Based Practice.  It is high up there with Best Practices. The following assessments we found associated with what Invega Sustenna purports to do.  The assessments deliver Real World Evidence (RWE).

Results – Assessments – Invega Associated

Results - Evidence

Comparative Assessments

Associated Document
Leisure_Crisis_Cigs_Meds_Sleep_2024060701_Notes
Results - Table – Post Leisure Problems
We noticed these before we were informed about Invega’s Side Effects
Table – Post Leisure Problems
Higher scores are problematic

Last Reviewed: 20240717-W:

Published 20240726-F

We first published this table on 20240726-F

 Results - Comparing Invega Sustenna with Clozapine

Below we compare Invega Sustenna to Clozapine.  We address problematic side effects.  The majority of them we took from the Janssen site.

The most common side effects of INVEGA SUSTENNA® include:

Table – Invega Sustenna side effects - Compare with Clozapine
R = Reverse Score
Low Scores are Favorable

FYI - Side Effects & Safety | Janssen Portfolio of LAIs - Invega

https://www.janssenschizophreniainjections.com/side-effects-and-safety/

GoodRx

FYI – Invega - Results - Benefits of Invega Sustenna

“It's used to improve mood, thoughts, and behaviors in adults who have schizophrenia or schizoaffective disorder. Invega Sustenna (paliperidone) is a long-acting injection that's given into the muscle, typically once a month, by a trained healthcare provider.”

Clozapine - StatPearls - NCBI Bookshelf

National Institutes of Health (NIH) (.gov)

Benefits of Clozapine Nov 10, 2023

“Lower risk of suicide (clozapine has been shown to reduce suicidal behavior even in patients with non-treatment-resistant schizophrenia and schizoaffective disorder).”

Aspect

Note (Clozapine) - Lowers risk of suicide, Plus

Just as a panic attack is automatic so can be an impulse to die.  Clozapine lowers the risk of developing tardive dyskinesia.  In our case it reversed TD.  Clozapine improves cognition and Quality of Life (QOL).  Our QOL is gradually improving.  Clozapine decreases the chance of relapse.  We have been out of the hospital for just over 5 weeks. 

Results - Invega Adverse Reaction Driven Comparative Assessment

Low scores are favorable

Result – Sample of Costs

20240729-M: Cost Calculations This is an estimate for the cost of Invega Sustenna.  Per injection around $1,500 divided by 30 days equals $50 per day.  Thus, Invega should be at least 25 percent better than Clozapine and resolve all of my mental problems with no side-effects.  This is not the case.

Research

High Weight Items – Akathisia & tardive dyskinesia (TD)

“Commonly Observed Adverse Reactions for INVEGA SUSTENNA®: The most common adverse reactions in clinical trials in patients with schizophrenia (≥5% and twice placebo) were injection site reactions, somnolence/sedation, dizziness, akathisia and extrapyramidal disorder.”

WebMD

Invega Sustenna gone wrong

“Get medical help right away if you have any very serious side effects, including: fainting, severe dizziness, slow heartbeat, seizures. Paliperidone may rarely cause a condition known as tardive dyskinesia. In some cases, this condition may be permanent.”

Feature Doctors

BSL & Bera Ten years on Clozapine  
Daniels 1st use of Invega Injection  
Vu Never considered Invega  
Lee Put us back on Clozapine  
Kline (Control) Favors Clozapine  

Discussion

Cost (Loss) Management - Lived Experience Outline

2012 Light House – The Daniel’s Experiment

In 2012 we were drinking beer.  We started after we completed fall semester at Cypress College in 2011.  As Matt put it “you are drinking too much”.  Eventually we ended up in a residential treatment program called the Lighthouse.  The doctor, Dr. Daniels, said that she had something that would “put us in a place better than ever”.  She took away Clozapine and replaced it with Invega Injections.  We were so sick we could no longer determine what works and what doesn’t.  For three days she gave us a barbiturate which masked our sleep problem.  We have found we are totally reliant on Clozapine. 

Dr. Daniels > Bun Soo Lee MD

After the first three days she took away the Barbiturate and we remained awake for 72 Hours.  Eventually the program sent us to the hospital to be evaluated.  Dr. Bum Soo Lee (BSL) evaluated us and then admitted us to the psych ward at Western Med Anaheim.  He gave us Restoril to sleep.  It was helpful yet not as efficacious as Clozapine.  When release we linked with BSL and he agreed Clozapine would fit better than Invega.  On Clozapine we were out of the hospital from 2013 till 2024.

Leisure was Hospitalization - Invega

In 2024 we have been hospitalized as of July 28th three (3) times.  The first one at Aliso Ridge should have worked but housing and poor social support interfered.  In March of 2024 we were sent to Global for impropriety.  We were released from Global to Leisure to wait for a Housing Waver.  In all we spent seventy-five (75) days at Leisure.  For us this stay was counter-therapeutic.  We have been out of “the hospital” just over thirty (30) days.  For us we need to be out till the end of this year for the episode to be closed.  Once again, we are dealing with Anxiety complicated by a Sleep Disorder.  Our new Dr. Bera driven treatment plan took effect July 1st, 2024.  We have been sleeping well.  Yet strong evidence indicates that Invega is working against us.

2024 March Presenting Problems

As we mentioned earlier our Rent a Shared Roommate (RASR) had problems with mania, bullying, gambling and anger.  He also suffered Sleep Apnea and he destroyed property.  After coping with him for more than two (2) years we finally got worn out.  We became psychotic, having many mistaken beliefs, and demonstrated impropriety.  The landlady called 911 for our impropriety. 

Clozapine Hell

We were admitted to Global’s psych ward. We had reservations about Clozapine so they took us off and replaced it with Invega Sustenna.  The next 72 hours are what we call Clozapine Hell.  We didn’t sleep for 72 hours.  Our cold-turkeying off Clozapine was for us near absolute suffering and misery.  The link below is to a paper describing how we managed Clozapine at Leisure Circle our next lay over.  Even with three medications: Ativan, Restoril and Invega Sustenna they do not substitute for Clozapine.

FYI - Medication Gaps

https://clozapinerx4ecstasy.blogspot.com/2024/07/medication-gaps-returning-to-normalcy.html

MR Vignette

We’ve watched many people on Invega and Invega Sustenna.  We only take notice if we share a room with them or they die.  While sharing a room with Mikel R. he was placed on Risperidone then Invega.  Neither really helped.  Mikel was restless all day and all night.  This gradually made it very hard for us to get sleep.  We talk about sleep a good deal.  That is because we consider sleep for us the most important daily factor for health and preventing relapse.

FYI - Spell Risperidone

Minded Medication

We call being vigilant about our medicines Minded Medication.  Appointments and pharmacy are things we think about and plan for daily.  This report is a product of Minded Medication. 

Discussion - Structured Temporal Reconciliation (STR)

One of our coping tools we call Structured Temporal Reconciliation (STR).  STR is like charting.  In 2024 we charted for: the episode, Leisure, Sleep, our over-niters, and gals we were interested in.  We have lost the ability to leverage our STR method.  Charting and writing are a couple of methods for coping with our Anxiety.

What direction is stable?

“Signs that someone is mentally and emotionally stable: A sense of being in control of their personal thoughts and actions. A sense of (general) well-being. Friends and family are generally confident in the individual's ability to care for themselves physically, emotionally, and spiritually.”

What direction is recovery?

By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals.

Bera Vignette – Mindful Medication V Long Lasting

20150609-TU – Conflict - Centered About Meeting of the Minds (MOMs)

At MOMs Dr. Bera stated in his presentation that his organization (JHF) was using “state of the art” approaches.  At MOMs Dr. Bera MD along with another JHF helper gave a presentation on their operation. At most he mentioned three psychotropics.  He concentrated about 3 minutes on the INVEGA series.  Knowing from Dr. Chau that the pharmaceutical companies pay MD’s to promote pharmaceuticals, we saw Bera MDs presentation as a sales pitch for the INVEGA series. 

Invega Sales and Marketing

We started this report back in 2017 in response to having a problematic roommate (MR).  MR was placed on Invega and it did little or nothing to help him.  The manufacturer needs to make a twenty item or so assessment to measure Invega’s efficacy.  Maybe we are benefiting and don’t know.  Back in 2017 we saw that Invega was being promoted in our clinics waiting room.  We saw this focus on one medication as a Conflict of Interest.

Find Photo Documentation

Lived Experience – Cohort (Stable yet not Recovering or Thriving)

Character Invega Injection Result Note

• Led (TF) Ineffective Manic – Angry – Bully - Gambler 
• Easp (MO) Lower functionality - By 2024 he was doing nothing for himself 
• James Younger (JY) Ineffective Manic 
• Mark (RKM) Caused problems - Committed suicide 
• Mikel (MR) Ineffective Eventually got on something that worked a bit 
• 2012 Self (KET) Ineffective - Resulted in hospitalization 

Treatment Preferences

You might wonder how is it Clozapine?  We were diagnosed in 1989.  It took until 2006 or seventeen years to get put on Clozapine.  There is something called the Clozapine Algorithm.  Based on it we were a candidate for Clozapine years before 2006.  Out of dozens of meds we know Clozapine is the best fit.  SleepAble factors (environment and agents) are a few of the things that Clozapine cannot conquer.  Our Rent a Shared Room roommate Ted gave up no Peace for more than two years.  He broke us.

Anxiety

Intense, excessive, and persistent worry and fear about everyday situations. Fast heart rate, rapid breathing, sweating, and feeling tired may occur.  Common Causes. Anxiety can be normal in stressful situations such as public speaking or taking a test. Anxiety is only an indicator of underlying disease when feelings become excessive, all-consuming, and interfere with daily living.

Anxiety in Psychiatry

…a mental condition characterized by excessive apprehensiveness about real or perceived threats, typically leading to avoidance behaviors and often to physical symptoms such as increased heart rate and muscle tension.  Example "we are seeing more calls related to anxiety and depression"

DSM 5 Anxiety Disorder

How does the DSM-5 describe anxiety?

The anxiety and worry are associated with three or more of the following six symptoms with at least some symptoms present for more days than not for the past 6 months: restlessness or feeling keyed up or on edge, easily fatigued, difficulty concentrating or mind going blank. Jun 1, 2022

Orthostatic hypotension

A primary reason we wanted to get off Clozapine

“Symptoms of orthostatic hypotension include lightheadedness, weakness, blurred vision, and syncope or passing out.  When a person stands up from sitting or lying down, the body must work to adjust to that change in position. The body needs to push blood upward and supply the brain with oxygen. If the body fails to do this adequately, blood pressure falls, and a person may feel lightheaded or even pass out.”

Weakness

“Orthostatic hypotension is the term used to describe the fall in blood pressure when a person stands (orthostatic= upright posture of the body; hypo= less + tension=pressure). Orthostatic Hypotension (Low Blood Pressure When Standing) ... Symptoms of orthostatic hypotension include lightheadedness, weakness, blurred vision, and syncope or passing out. ...” 

XenoNet

XenoNet refers to our system and network to keep our medicine coming without any gaps.

Xenobiotic

“Adjective = Relating to or denoting a substance, typically a synthetic chemical, that is foreign to the body or to an ecological system.  Noun = Substances that are foreign to the body or to an ecological system.”

Associated Concepts - 1.3 - Medication Error(s)

From 2013–2023 we suffered few medication errors.  The main errors were phlebotomy errors where the blood drawer had problems poking the vessel. In 2024 we suffered many errors with medication continuity.  At Leisure Circle, we were made to go sleepless about 7 gaps between Lorazepam and Restoril.  As of today, July 28, 2024, we were chalking up our symptoms to brain damage incurred at Leisure were the 7 gaps occurred.  Staying up sleepless cooked our brain.  In other words we suffered some brain damage over the course of 75 days.

FYI - Our papers on this Episode

Auto_T-Rex_Case_14090202_Leisure V2024

https://ktork46.blogspot.com/2024/05/crisis-and-episode-2023-2025-for-and-by.html

Leisure_Crisis_Cigs_Meds_Sleep_2024060701_Notes

https://clozapinerx4ecstasy.blogspot.com/2024/07/medication-gaps-returning-to-normalcy.html

Diagnoses

Since 1989 we have had some six (6) diagnoses made by professionals: Bi-polar is used the most.  No one has on paper diagnosed our Anxiety.  We feel that we suffer and have suffered Anxiety complicated by Sleep Disorder for most of our adult life.  The Sleep Disorder is obvious, we cannot sleep without medication.  Clozapine is so far the best medication to help us Sleep.  In addition it helps with symptoms that Invega Sustenna (IS) is supposed to help with.

Coping failure

In 2023 we were overwhelmed by our home environment and an agent our roommate.  We had successfully coped for more than two years.  Our roommate was suffering: Mania, anger issues, gambling problems and was a measureable passive aggressive bully.  As December 2023 came around our Sleep was impaired more than ever.  We became psychotic and demonstrated impropriety.  We were hospitalized for impropriety not suicidality or homicidality.  We had become gravely disabled.  We were trying to find something if need be to replace Clozapine so we agreed to IS.

Invega History - Dr. Daniels > Bun Soo Lee MD (Revised)

In 2012 we were treated by Dr. Daniels at the Lighthouse residential treatment facility in Anaheim.  She cold-turkeyed us off Clozapine and initiated Invega injections.  She augmented with a Barbiturate.  After the first three days she took away the Barbiturate and we remained awake for 72 Hours.  Eventually the program sent us to the hospital to be evaluated.  Dr. Bum Soo Lee (BSL) evaluated us and then admitted us to the psych ward at Western Med Anaheim.  He gave us Restoril to sleep.  It was helpful yet not as efficacious as Clozapine.  When released we linked with BSL and he agreed Clozapine would fit better than Invega.  We were out of the hospital from 2013 till 2024.

 

Medication Gaps & Returning to Normalcy – Prodromal Indicators of an Episode for Keith Torkelson

Medication Gaps & Returning to Normalcy – Prodromal Indicators of an Episode for Keith Torkelson

 Feature Photo

Me Before and After

Abstract

In this study we address our recent Episode of Behavioral and Mental Health symptoms.  At the core as is usual de-regulation of our sleep and sleep medication.  We are now on Clozapine and Invega.  Clozapine is still indicated for our well-being including: Peace and Sleep.  This study also describes a move in our bed from BadBed to a BetterBed.  Our current bed at Harvest Retirement would be a GoodBed if it were affordable.  This report addresses gaps in our medication.  While managing our own meds since 1989 we never had gaps.  The gaps occurred at Leisure Circle Skilled Nursing.  We also have been unable to keep Emergency Backup Medication.  We hope the impact of this study is such that it contributes to for us an expedited Return to Normalcy.  We give Leisure Circle 3.0 Star Equivalents for their supports and services.  We give Samantha our social worker 5.0 Star Equivalents for her supports and services.

Mental Health

In this study we address delusions, mistaken beliefs, sleep-rest-peace, problems associated with Leisure, prodromal indicators of an episode and compare Invega with Clozapine.  We hope to never have a major hospitalization related episode again.

Define Delusion

“a false belief or judgment about external reality, held despite incontrovertible evidence to the contrary, occurring especially in mental conditions. He began to experience hallucinations, delusions, anxiety, and agitation along with dizziness and nausea"

 

Define Mistaken Belief

“The wrong idea or misconception. A mistaken belief, especially one based on unsound arguments.  The wrong idea or misconception.”

Sleep and Medication Advocate

We have obtained the commitment of Dr. AS Kline to act long-term as our sleep and medication advocate.  We roughly want her to enforce a treatment plan that works best for us.

Doctor On-call

We had Doctor Daniel Chue MD at Leisure.  He wasn’t very helpful.  In 75 days he only saw me once.  In addition he denied me Clozapine.  Because I do not know his middle name I cannot track him down.  Doctor Chue follows us to Harvest.  The residents say he isn’t very helpful.  In the long run if I return to Harvest he might have to take over our case.

Table – Sleep, Rest and Peace

We lived with a consumer of mental health service Ted for over 2 years.  He impaired our sleep, rest, and peace.  He just wore us out.  He exhausted our coping.  He was angry, manic, a gambler and had personal problems with us.  The first hospitalization in this episode was January 2024.  The following are Sleep / Rest Scores: Ted at Shank’s = 33.3%; Dang at Leisure = 12.5%; James at Harvest = 86.8%.  Lower scores are problematic.  Dang was actually a good roommate yet the environment at Leisure drove his score down.  The environment at Leisure was torturous for us.  We went about 7 occasions of inadequate sleep medication thus we did not sleep.  Next we score problems we picked up while at Leisure.

Table – Post Leisure Problems

High scores are problematic.  We compare our problems post Leisure with 2022 a reference year.  We stayed at Leisure 75 days bedridden.  Again, we suffered at Leisure: Gaps in Sleep medication, sleeplessness, lack of peace and complications.  On 20240717 (W) we scored our problems.  Before Leisure in 2022 we scored 19.4% whereas after Leisure we scored 63.9%.  Higher scores are problematic.  We actually got worse in the hospital.  The problems were associated with Sleep deprivation and Noise.

Table – Prodromal Indicators of an Episode

Prodromal Indicators are important to us for preventing an episode.  On 20240717 (W) our prodromal indicator score was 46.9%.  Higher scores are problematic.  Like I said we got sicker while at Leisure.

Table – Invega Sustenna side effects

Last we compare Clozapine our mainstay with Invega Sustenna monthly injections.  We use Invega side effects as a reference.  Our Invega Adverse Reaction Score is 72.5% for Invega and 12.5% for Clozapine.  Higher scores are problematic.

Med Continuity Gaps History (Sample)

Medication Gaps – Least Restrictive

For year 2024 medication gaps caused us several nights of sleeplessness that worsened our condition.  There were about seven (7) medication gaps at Leisure Circle Skilled Nursing.  This is the primary reason we only give Leisure 3.0 Star Equivalents.  Our Long Term Bed Match Score was 13 differences across 17 items.  Higher scores are less favorable.  This means that our Leisure bed was not a good match for us.  We performed a Lock-down Comparison Score or Index.  We compared Westminster Therapeutic Residential Center (WTRC, 2006) with Leisure (MAY, 2024).  Higher scores are favorable.  WTRC earned a quality score of 92.9% whereas Leisure earned a score of 35.7%.  We stayed at WTRC over four months had no medication gaps. 

Priority – Sleep Security Systems

Our number one priority wherever we go or are is Sleep and whatever contributes to it.  We have faced too many sleepless and sleep challenged nights in 2024.  Today, June 5, 2024, we were searched at Leisure Circle related to smoking cigarettes.  We declared everything and the searchers seized our Sleep Security System of Emergency Backup Medication (EBM).  Now we are all anxious about the search and seizure process and our Sleep tonight.  They had repeatedly shorted us on our nighttime Sleep medications and we were making due with our backup Ativan.  They have shorted us more than seven (7) nights with our Sleep Medication.  Not only do we feel bad about “jacking” their system we feel bad to have to tell Samantha our social worker what and why we did it.  We are here all anxious with no recourse but to suffer Leisure’s error prone medication management system. 

Medication Gaps - Bring to Samantha’s attention

About a month ago, we brought issues with medications to Samantha’s attention.  We were having alternating problems with keeping a continuous supply of our sleeping medications Restoril and Ativan.  The procedures between running low, ordering, getting doctors approval, pharmacy to fill, delivery and distribution creates gaps were we the client miss doses of these most important medications.  In just over 60 days here at Leisure Circle we have been made to miss more than 6 doses.  That is associated with more than 6 miserable sleepless nights.

Medication Management – Making progress

We get anxious not knowing if our medication will be sustained as prescribed.  This has been a daily ordeal for the med nurses and me. See May 9, 2024 (TH) Update.  Fear gap in medication(s).

1989-2023 No Gaps

When we managed our medications there were no gaps.  We never missed our monthly CBC lab test.  At Aliso Ridge the medication was mismanaged that we were up 72 hours straight.  We made a mistake thinking we could get by without Clozapine.  At Global we had sleep problems also.  Finally at Leisure there were about 7 gaps.  Gaps are associated with sleeplessness.  The additive sleeplessness this year 2024 has injured our brain.  We will discuss our symptoms of brain damage later in this report.

May 7, 2023 (TU=PM)

Continue Clozapine Detox

The Leisure contracted Psychiatrist says Clozapine is not an option anymore because it is in the same class as Invega both anti-psychotics.  He also said “Sleep is important.  He prescribes us trazadone for sleep.  Trazadone only aggravated our Anxiety and kept us awake.  This year 2024 we were taken cold turkey off Clozapine three (3) times.  The first time was at Aliso Ridge and we agreed to it.  At Aliso Ridge we were up for 72 hours sleeplessness coming off Clozapine.  We call withdrawal from Clozapine with inadequate sleeper medication Clozapine Hell.

Trazadone

On May 7, 2024 (TU) the doctor prescribes us trazadone.  We hoped it would do what it was prescribed for: Sleep.  On May 9, 2024 (TH-PM) there is still no trazadone.  For us Trazadone was ineffective.

Stopping Clozapine Error

Why stop Clozapine after more than 10 years?  Beginning December 2023 we were looking for an alternate for our primary medication since 2007 Clozapine.  At the dose we have been taking there is a risk of falling.  On one occasion we did fall and broke a front tooth.  Later the tooth area was repaired with an implant.  Since March 2024 we have agreed to monthly Invega injection.  Invega does not substitute for Clozapine.  Currently, July 18^th, 2024, to augment Clozapine at night I am taking Ambien and Lorazepam.  The greatest factors in Controlling Anxiety and staying out of the hospital are: Sleep, Rest and Peace.

Clozapine – Emergency Backup

This is built off of a notation about Aliso Ridge.  “Clozapine Detox without Clozapine with assistance from… ”.  This year 2024 we have been detoxed off Clozapine 3 times.  I call Detox from Clozapine = Clozapine Hell.  You go completely sleepless until some effective alternate is put in place.  The locations where we were detoxed are: Aliso Ridge, Global, and Leisure.  Since July 1, 2024 we are on a solid treatment plan that includes for sleep: One antianxiety (Lorazepam), one sleeper (Ambien) and one incidental sleeper (Clozapine).  With the exception of our Harvest roommate James playing his radio we have slept well here at Harvest while on our new and improved treatment plan.  We carry one day’s worth of Emergency Backup Meds (EBMs) with us.  We would like to get authorization to carry one or two days EBMs.  So far from June 20, 2024 to July 18, 2024 there have been no medication gaps here at Harvest

20240530-TH-First Drafted

In the table below we list features about sleep (S) we need.  We provide for these for any roommate also.  Below we score SleepAbility and SleepAble factors about three locations: Scoring Shank’s, Leisure and Harvest.  SleepAbility are the Host or our inherent and internal factors promoting sleep, rest and peace.  SleepAble are the Agent (roommate(s)) and Environmental factors permitting sleep, rest and peace.  An important factor in long-term site selection is cost effectiveness.  Harvest at just under $1,400 out-of-pocket is not cost effective.

Harvest - James Proof

We moved into Harvest June 20^th, 2024 (TH).  Our new roommate is a gentleman in his 70s James.  The only grievance we had with James is that he was playing his radio without the mandated headphones.  On July 15^th, 2024 (M) we brought it to his attention.  He has used headphone since or about 48 hours.  For a Sleep / Rest Harmony Score James score 86.8%.  Higher scores are favorable.  James is our proof that we can get along now with our roommate.  The radio he played 24/7 was interfering with our sleep.  Hopefully that is remedied.  We get a bit anxious that he may use it without headphones again.

20240509-TH – Leisure - Medication Management-Medication Gaps

For the reasons listed below some odd 7 incidences of running out of our sleep medications (Restoril and Ativan) occurred.  Each incidence was associated with sleeplessness.  By the 5^th occasion we were suffering noticeable burning in our brain.  The burning was associated loss of competencies and aggravated Anxiety.

Some responses from Leisure nursing staff

• Pharmacy did not deliver
• The order was not put in on time
• We do no not have it yet
• Will tell you when it comes
• Are you sure you want to take it the way the doctor prescribed it

Our coping – Emergency Backup Medication (EBM)

Once we discovered our Emergency Backup Medicine (EBM) with, Lorazepam (Ativan) and Clozapine, with our property we were empowered to get some sleep.  When Leisure shorted us we just took Ativan when they missed.  Eventually we worked Clozapine in to take the place of missing Restoril. This was working we were getting sleep and improving.  We thought we would be out of Leisure Monday the 3^rd of June.  This fell through and we were showing signs of snaking their cigarette smoking system.  We were searched twice and had to surrender our EBM.  Leisure confiscated: Our EBMs, lighters and our sewing kit.  None of these items were returned to us.  This was clearly a search and seizure.  Remember we were given to policy sheet describing what we could not have.

Continuity Problems Persist

Now, we were back to trusting Leisure’s continuity and wouldn’t you know it for June, 5 (W), 2024 overnight they had no Ativan.  The doctor prescribes us Ativan to sleep.  We have a sleep disorder at the core of our health issues.  We were made to stay up all night.  Staying up all night on so many occasions here at Leisure has impaired our recovery and confidence that we can make it on the outside.  You would figure they would want to graduate us as a success.

Definite Brain Burning & Damage

To begin a sleep deprivation cycle we awoke at 7 am June 5 (W), 2024.  Sleeper meds were finally administered June 7 (F) at 1am in the morning.  They said it was emergency medication.  If they had emergency medication before why let us go sleepless on some odd 5 nights.  We could sense that hour by hour we were suffering the worst brain burning (damage) yet.  We were up more than 40 hours.  The whole time we were dwelling on how we broke the rules while coping for our own well-being as well as how stupid we were becoming.  When we were compensating for the gaps our own way we were making noticeable progress.  Our family indicated we were making progress.  At this point every medication cycle is wrought with uncertainty and stress.  In 75 days there were about 7 medication gaps.

20240605-W-ON without Ativan up 42 hours straight

First night without backup we were given no routine Ativan that night (June 5, (W) 2024) for overnight.  This led us to involuntarily stay up over June 5^th and past June 6^th.  We include the awake-time calculation below.  Without Clozapine our sleeping from June 6^th to June 20^th 2024 was very light.  In sum we had periods of medication deprivation at Aliso, Global and Leisure.  In the beginning at Harvest I wasn’t on a sound treatment plan.  We found it necessary to augment with Clozapine.  Since July 1^st, 2024 we have followed our inclusive of Clozapine sleeper treatment plan.  I still need to work on daily Anxiety management. 

Break Policy – Guilt

When we were was admitted we were given no policy information by Leisure.  On admission they let us keep our lighter.  Because no-one else had a lighter we knew that using our lighter was probably wrong.  Using our EBMs to help us sleep was a choice we don’t regret.  What bother us was I let Samantha Down while she was gone.  Samantha was our Leisure social worker.  We had some one-on-one meetings and I grew quite fond of her.  Below is a note to Samantha regarding sharing our transgression.  On June 7 (F), we gave a letter to Sam’s Assistant

2024-6-5-W-Samantha
Who is Samantha?
Leisure Circle Skilled Nursing Social Worker (Our friend)
20240610-M-Samantha Returns
June 5^th, 2023
Search and Seizure

Given to Samantha

“I was smoking between breaks

So they searched us

Found our Emergency Backup Meds

They skipped our meds so many times

That I took control back

With our own meds to sleep

They were unknowingly dropped off because I keep Emerg Meds all over

Now I am at the fate of the Med Mgmt. System again

I don’t have much faith right now

I missed you while you were gone

Didn’t mean to cause trouble

Sorry I broke any rules”

6-5-24 Keith Torkelson

Kline’s visit to offer Advocacy

On June 6 (TH), 2024 the Kline’s visited we had on our to-do list many things.  We hadn’t planned to spend so much time for them advocating for our Medications.  With this visit they found out firsthand the medication challenges we have been facing at Leisure.  After hours of resistance we got our medication, after being awake for some odd 38 hours, at 1am June 7, 2024.  The current medication problem began the morning of June 5, 2024.  The medicine we were given was not routine: The nurse said it was Emergency Medication.  Charley our brother-in-law pushed it to the limit and pulled through for us after hours of helping.

20240606-TH-Shopping-ALFs-Graduation

Earlier Samantha had directed us to Harvest Retirement.  For the day on our list was shopping for Assisted Living Facilities (ALFs).  At the last second we were re-directed to Sea Crest in Fountain Valley.  Sea Crest was located at a good corner for us yet when we visited it had too many undesirable features.  Epi is the new owner.  After Sea Crest we decided to go look at Harvest.  About a month ago Samantha mentioned Harvest, which we toured: Charley, Lanaii, and Keith.  We agreed that Harvest is a better fit.  We found Harvest as compared to Seaside livelier, smoking area user friendly, less depressing, cleaner, more orderly, as well as the sales rep Betty is more empathetic.  Eventually on June 20^th (TH) we graduated Leisure and were via our friend Kulle from Leisure to Harvest.  Our first two nights at Harvest our roommate was gone.  We were still relying on an ineffective treatment plan.

On June 6 (TH), 2024 - Sacrifices

On June 6^th 2024 (TH) we also visited Julie Paulino our old landlord circa 2011.  Julie says when I stabilize and there is an opening I am welcome at Hillview again.  She quoted $700 month.  This would be cost effective and return many of the things we sacrifice while living at Harvest.

UMP=Ultimate Move Plan

Our ultimate move plan ends with us moving back to Harvest.  We hope that doesn’t occur for ten years or more.  Currently we are at Harvest.  We plan to wean down our storage then move it to Public Storage across the street from Harvest.  Then we will test Julies House for a couple nights.  If Julie’s works we will move in at Julie Hillview House.  We need to create a checklist or tool to detect if it is time to move back to Harvest.

Budget of Spending Money-Restrictive

Our Ultimate Move Process Checklist (UMPC) has some forty (40) items.  We were used to paying $700 per month for a Rent a Shared Room (RASR).  At Harvest our share of the rent is $1348 which cuts severely in to our spending money.  Right now we are hoping for $100 per month in spending money.  In terms of finances Harvest for us is not Least Restrictive.  Here at Leisure we have used many coping strategies to adjust.  Our goal is to have this report mostly done before our graduation and next move that is scheduled for June 3, 2024.  The scheduled move date fell through.  We actually did move until the 20^th of June 2024 (TH).

20240610-M-Samantha Returns

Samantha returns after she took two weeks of vacation.  I saw here in the afternoon yet did not say anything.  He assistant had our letter of guilt.  I tried repeatedly to get Benadryl added as an OTC med.  Now we are down to 3 Restoril.  The med nurse says the order was placed a couple days ago.  Since the intervention by Charley and Lanaii we have been reporting daily on meds to Lanaii.  So far OK. For June 5 through 7 LAK, CSK, and ASK are our Hero’s

20240611-TH-Nurse Admin & Harvest

This morning Leisure the Nurse Administrator at Leisure was still pushing Sea Crest.  I described for the third time the decision to go with Harvest and how Samantha recommended them about a month ago.  Now Samantha’s assistant is working with Betty at Harvest.

20240613-TH-Dear Nurse-Medication

We are down to only 1 Restoril.  Restoril is our other sleep medication.  Nurse says it is ordered.  Resulted in no continuity gap.

20240620-TH-Key Event - Transferred to Harvest

20240626-W-Linking with Our Psychiatrist

On this day we saw Doctor Bera.  Dr. Bera has been treating us for some odd five years.  Together we reworked the treatment plan exactly as we felt prudent.  Our presenting problem was back to concerns about Anxiety and Sleep Disorder.  We didn’t discuss psychosis or mistaken beliefs at all.

20240701-M-Treatment Plan and Harvest

It took five days of promoting to get put on our new (Bera) Treatment Plan.  In the interim in order to sleep we needed to augment the original plan so we could sleep.  On July 1^st, 2024 the new plan was implemented after they got “Doctors Orders”.

20240713-SAT

As we did for years starting July 20^th, 2024 we are going to carry emergency medication with us.  Why must I have emergency medication?  Having emergency medication helps us with our Anxiety.  I will have it if there is a Med Continuity Gap (MCG)

20240717-W

Reference: 10_BMBBS_Pro_Dromal_Indicators_24052805_Psychosis

Table – Finding Prodromal Indicators of Melt Down

Since 1989 we have suffered symptoms of all of these things

Long-term Medication Choices

Choosing the best Psychotropic Medications

What does Invega Do?

What does Invega do in the brain?

“Invega works by restoring the balance of two neurotransmitters in the brain: serotonin and dopamine. Serotonin helps regulate anxiety and mood, among other actions. Dopamine is important for central nervous system functions such as movement, pleasure, attention, mood, and motivation. Apr 27, 2023”

Does Invega calm you down?

Contraindicated for Anxiety

“Invega is not approved to treat anxiety or depression. In some cases, the drug may be used off-label for these conditions. Keep in mind that, rarely, Invega may cause anxiety as a side effect.  So it is possible the drug may worsen this condition for some people. Jan 16, 2022”

Figure – Pharmacokinetics of Invega Sustenna

20240717-W: Reevaluate Invega Dosing - Adherence

When we agreed to take Invega it was due to our family wanting such.  We agreed to the highest dose of Invega.  We thought it was benign so we agreed to it.  Years ago starting 2017 we had proven how Invega was not right for us because Rispiradone had no effect on use.  Risperidone is the parent or actually what is in Invega.  From the graph above it looks like Invega over time can reach toxic levels.  I have known many people who did not do well on Invega (Mikel and Ted for example).  We are going to discuss the costs and benefits of Invega with doctor Bera.  The family thought my episode in part was caused by non-adherence.  This is wrong. 

Comparing Invega Sustenna with Clozapine

Below we compare Invega Sustenna to Clozapine.  We address problematic side effects.  The majority of them we took from the Janssen site below.

The most common side effects of INVEGA SUSTENNA® include:

FYI - Side Effects & Safety | Janssen Portfolio of LAIs - Invega

https://www.janssenschizophreniainjections.com/side-effects-and-safety/

What does clozapine do?

“Clozapine is an antipsychotic medicine that helps to adjust the levels of dopamine and other chemicals available in your brain. Clozapine reduces dopamine activity where it is too high, helping with symptoms like hallucinations.”

 

Why is clozapine so effective for schizophrenia?

“Clozapine produces lower and more transient D2/D3 receptor occupancy than most other antipsychotics. This allows the dopamine supersensitivity of the motor system to gradually resolve, and tardive dyskinesia to slowly fade.”

FYI

https://www.mayoclinic.org/drugs-supplements/clozapine-oral-route/side-effects/drg-20066859?p=1

Brainstorming

Preparation notes for psychiatrist appointment
Why am I on Invega?
Adherence
Psychosis related to medication
Sleep and Rest Disorder
Alternate non-benzodiazapine anti-anxiety medication
Potential Actions
Increase Clozapine to 150mg at night
Possibly swap Restoril in and Ambien out
Linking with Harvest Psychiatrist – Daniel Chue

20240801-TH-Milestone

We will have one month stable on Bera’s treatment plan in the face of suffering potential unwanted side-effects to Invega.

August 2024 Follow Up Appt with Dr. Bera

Summary

The following discusses the goals we have for August and September 2024. 

Briefs

1Presening Problems
Address prodromal signs
Argue for no Invega
Follow up with Dr. Bera
Keep writing and publishing
Leverage and adjust to car
Move ahead with move plans
No drinking
No medication gaps
Present at the Behavioral Health Advisory Board (BHAB) meeting
Publish photos of Joan
Regular visits to the gym
Renewing medication
Socialize with others including James
Spend our Calfresh
Talk to Harvest Psychiatrist
Work around Lorazepam

1Presenting Problems

We have been on a high dose of Invega Sustenna since March of 2024.  We agreed to Invega because we were reserved about Clozapine. As of July 25^th, 2024 (TH) we have had five (5) Invega injections.  At the present we are overly anxious.  Our problems with sleep have remedied since July 1^st, 2024.  On this date we started a new treatment plan.  We have trouble resting during the day.  We am showing signs of Akathisia among other side effects.  We want to discontinue Invega in favor of Clozapine and potentially Seroquel.

Address prodromal signs

Of course one of our highest priorities is vigilance about the prodromal signs of an episode.

Argue for no Invega

Yesterday, July 24 (W), with Dr. Bera we began our argument against continuing on Invega.  He lowered our dose.  We have a history of being 100% adherent with our mainstay Clozapine.  Back in 2012 doctor Bum Soo Lee swapped out Invega and Clozapine back in.  We were stable from 2012 to 2023 or eleven (11) years.  Invega was ineffective for us as well as a few other people we knew.  The side effects of Invega are intolerable.

Follow up with Dr. Bera

We followed up prematurely on July 24^th, 2024 with Dr. Bera.  We used to see Dr. Bera every three (3) months.  Now because of the injections we must see him monthly.  We wanted to focus on how well our sleeping concoction was working.  Instead, we contested the Invega.  He did not see it fitting to eliminate Invega.  We brought the miserable Invega induced symptoms of Akathisia to his attention.  We suggested swapping two meds our and Seroquel in.  He asked about our family’s position on Invega.  Today July 25^th, 2024 we spoke with our niece, a double doctor, about Invega.  She seems to think that since we have done well (since 2012) on Clozapine that Clozapine is the keeper.

Keep writing and publishing

We have a lot less motivation to publish than we used to have.  It is not quite as rewarding.  Yet, soon we will finish this paper and publish it.  The overarching theme is the nature of medication gaps.  We though our mental bothers was due to gap associated sleep deprivation yet I looks like Invega is the culprit.  Just for fun we are publishing photos of ourselves and Most Significant Other Ever (MSIE) Joan.

Leverage and adjust to car

On July 19^th, 2024 (F) our car was returned.  Thank goodness Invega doesn’t impair our driving directly.  The day our car was to be returned our brother-in-law locked the keys in the car while it was running.  This stressed us out quite a bit.  We are lucky our sister found money in the budget for gas.  The car has huge resource value.  Our first long drive was 7-22-24 (M).

Move ahead with move plans - Adjustment

It is time to begin putting our experiences at Leisure Circle behind us.  The most important steps are not having anxiety about Harvest having gaps with our medications and visiting Leisure.  We are adjusting to Harvest in the face of Invega associated problems.  We may have adjustment disorder symptoms. We had hoped to after a term move into Julie’s Hillview house yet last time we looked there was an Open House.  We have been looking into renting a room.

No drinking

We stopped drinking July 1^st, 2012.  While in Global Hospital without adequate sleep medication we dipped alcohol hand wipes.  We ran this slip by our sponsor and he said I am not accountable for things occurring in the hospital.  So I get to keep my 12 years.

No medication gaps

We need no medication gaps with Clozapine, Lorazepam or Ambien.  As we did for numerous years we carry Emergency Backup Medication (EBM) in the form of Clozapine.

Present at the Behavioral Health Advisory Board (BHAB) meeting

Part of our recovery is to resume presenting in front of the OC Health Care Agency BHAB.  Our sister said to wait until August.  On the day of our July presentation we had an Emergency Appointment with Dr. Bera.

Publish photos of Joan 635 right now

We have gathered 635 photos of Joan.  We will publish the in August.  It is hard to hold back and wait.

Regular visits to the gym

Since July 1^st, 2024 we have been using our free Planet Fitness membership.  We have been attending at a rate of once every two days.  We paused when our family The Kline’s visited.  We are working out pain in our left arm associated with Invega injections.

Renewing Medication

We would find it empowering if Harvest let me renew my medication yet they say they will do it.  This causes us rely on them when we are more reliable.  For renewing our medication we were cooperating with Harvest, yet, the pharmacy Gilbert Drugs sent our August meds all on their own.

 Socialize with others including James

We have been trying our best to be social in the face of anxiety.  Our relationship with Betty is decaying.  Our relationship with James our roommate is strong.  We call our sister each day.  We talk as much as we can with the smoker guys.  We try to keep up with Facebook and messaging.

Spend our Calfresh

Due to our high rent we qualify for a sizable food allowance.  We use our CalFresh to eat out periodically.  This is a much needed resource.

Talk to Harvest Psychiatrist

The Harvest contracted psychiatrist is Daniel Chue MD.  At Leisure in 75 days he only saw us twice and that was because we approached him.  Here at Harvest we would like to talk with him about Dr. Bera’s treatment plan.

Work around Lorazepam

From 2012 to 2023 we never took Lorazepam during the day.  In addition we didn’t take it daily.  Leisure sort of got us dependent on Lorazepam.  We take it nightly for sleep and about once every 3 days during the day.

Appendix

20240605-W-Search and Seizure