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Research Part 2

This post is the follow-up to my last post about being at NIH and participating there in research.  However, I was discharged from NIH in October 2014, after a 7 month stay.  I have decided to write this post to describe how the rest of my stay at NIH went, and then I will make another post detailing what has gone on in my life since being discharged.  I do apologize for how long it took for me to write this…I don’t really have a concrete excuse as to why it took so long.  Thank you to everyone who has been supportive and encouraged me to keep writing here. more…

Research Part 1

I’ve been participating in a new adventure.  I am currently living at the National Institute of Health Clinical Research Center in Bethesda, Maryland.  I am participating in multiple research studies, the main one being a study looking into whether antipsychotics cause cognitive impairments in people with schizophrenia.

I learned about this study 5 years ago when I began frequenting .  It is listed under the “Current Research” section of the website.  When I first read about the study, I learned that you generally stay in the hospital for 6 months.  At the time, I was in the psych hospital more often than I was at home.  Getting to actually live in a hospital sounded amazing to me.  However, I was also in college and living with my boyfriend…going off to live in a hospital for 6 months was not reasonable.

In April 2013 I revisited the idea of participating in this research study.  I learned more about it then presented the idea to my mother to get her opinion.  She surprised me by being completely supportive.  I contacted the right people, got an application, and submitted it.  I was told that a decision could take several months because part of the application involved reviewing my records from therapy and all my hospitalizations.

In January 2014, I received some news.  A decision would be reached soon.  For a couple weeks I waited nervously, hoping really hard that I would be accepted into the study.  In February, I was contacted and told that a decision would be made if I agreed to take part in an outpatient study first.  This study was called The Sibling Study and looked at both genetic and cognitive similarities between schizophrenics and their siblings.  My mom and I would be flown to Bethesda where I would undergo tests for two days.  I agreed to participate.

The first week of March, we flew to Bethesda…which is important on its own because I am terrified of flying.  For two days I participated in interviews, neuropsychological testing, MRIs, and exams.  At the end, I was told a decision regarding the inpatient study would come in a few days.

The next week, a decision came.  I had been accepted.  Two weeks later my mom and I flew back to Bethesda so that I could be admitted.

That was the middle of March.  I’ve now been at the hospital participating in research for over a month.

The main study I will be participating in is nicknamed “The Coded Study.”  It has two portions that each last 4 weeks.  For one portion, I will be on my medication and undergoing tests such as PET scans and MRIs.  For the other portion, I will be on a placebo and undergoing the same tests.  The portions could happen in any order.

To prepare for this study, I have been tapering off some medications and onto others.  I am no longer taking Trazadone to help me sleep.  I am in the middle of switching from Thorazine to Seroquel.  I will eventually taper off the Lexapro as well.  This change in medication makes it easier for the Coded Study to be carried out.

I suppose you want to know what it is like to live in a research hospital.

I have my own spacious room.  I eat 3 meals a day that I pick from a menu.  I have groups to attend such as fitness, social skills, recreation therapy, art therapy, work skills, and self-management.  Each week, patients on the right “level” go on outings into Washington DC.  These outings have so far included museums and monuments.  Every other week, therapy dogs visit the hospital.  Some nights there are activities like bingo or themed parties.  There is a library, a gym, a chapel, and various recreation rooms.  There are seven other patients with schizophrenia on my unit.  Not all the patients are in the same study.  In fact, only one patient can be in the Coded Protocol at a time for safety reasons.  Once a week I see my psychiatrist one-on-one and once a week I attend “rounds” where I am interviewed by the psychiatrist in the presence of other doctors, research assistants, social workers, and nurses.

There is a big focus on safety.  Every day I am asked about my symptoms and whether I feel I am safe.  Am I at risk of harming myself or others?  Do I fear that others want to harm me?  A lot of the questions my psychiatrist ask me involve learning about what to expect when I am on the placebo for 4 weeks.  I really don’t have a lot of insight into what that will be like though.

I talk to my mom on a nightly basis.  She sends me a care package about every two weeks.  Usually a picture of Sheriff and some candy are involved.

Sheriff did not accompany on this adventure for multiple reasons.  I felt that I would not be able to take care of him while I am possibly unstable during the time that I am on a placebo.  There is a very real possibility that I will struggle to take care of myself during that time.  I also do not have access to pet stores to buy dog food or other supplies he might need.  Nor do I always have access to the outdoors for his toileting needs.  So, Sheriff is greatly missed but safe and happy at my parents’ house.

I’ll continue to post updates on how I am doing.  The next one will probably occur after or during the Coded Study.  I may become psychotic during that study without my medication so I might have an interesting tale to tell.  One thing that will occur is a better diagnosis or a confirmation of schizophrenia.  While I am off my medication, the doctors will get a better idea of my symptoms and hopefully a better idea of what specifically I should be labeled as.  I have to remind myself that is all it will be…a label

Book of Psychosis

So I’ve decided to share some of the drawings from my art journal.

I use this art journal mainly when I am psychotic and/or hospitalized.  In the first two years of my illness, 2009-2010, it went to every hospitalization and was often used as a way of communicating.  I use it less often now as I can communicate better now, but it is still something I add to.  I can also read it pretty much like a book.  I know how I felt in each drawing and what I was trying to communicate.

Let’s look at a few drawings.

This was drawn right before my first psychiatrist appointment that would start the process of my diagnosis.  I was trying to describe the four moods I felt like I was experiencing instead of normal feelings.

Top left: Cactus: characterized by irritability; Top Right: Cotton: I felt like I was wrapped in cotton gauze whenever I tried to interact with the world.  It was hard to communicate and stay in reality;  Bottom Left: Water: similar to Cotton but I instead felt like I was underwater looking at the world which was on land; Bottom Right: Butterfly: The mood that felt the most normal.  I experienced it most often when training dogs or working.

I drew this while in the hospital.  At the time they were trying me on a lot of different medications which were all interacting and causing lots of side effects.  The one I tried to communicate here was feeling jittery.  I would later learn that this is called “akathisia” and is a common side effect of anti-psychotics.

I drew this piano when I was out of the hospital.  However, sometimes when I was in the hospital I would sit down and play it as if it was actually creating music.  I would state that playing the piano was one of the only things that made me feel happy and normal.

I drew this in mid 2009 in the hospital.  I had begun spending a lot of my time pacing and this frustrated me.  I also began “sun-downing” which is a term that usually describes when a person with Alzheimer’s regresses in the afternoon.  The nurses meant that in the afternoons I was more anxious and disorganized.

I drew this in early 2010 when I was not in the hospital.  It is pretty different from the other drawings because it is less abstract and includes a lot more words.  Most of the phrases are song lyrics or quotes from poetry.  I was trying to communicate that I felt very fragile in my recovery and that I felt like being out of the hospital was a more confined recovery than being outpatient where I felt more likely to “break” since I was in a bigger “box.”

There are many more drawings in my art journal but these do the best job of showing my mindset and communication style.  Some other pages in the journal have lots of song lyrics, as well as poetry that I either read or wrote myself.  There is a definite progression from very abstract drawings to drawings with more clarity.  However, sometimes there is a very abstract drawing as I regress into psychosis again.

It’s My Episode, Turn The Channel

It’s been awhile again.  I have so much to say.

In October I moved back to Kentucky.

In November I decided to try working again.  Big step!  The job I wanted most was to work at Amazon as a customer service representative.  My best friend, her husband, and her brother all work there.  I went to the job fair, got interviewed, and about a week later received the call that I had been hired.

I really enjoyed the job and the environment it was in, it was challenging but also rewarding.  However I did find it to be stressful.  Not just the specific job…but having a job in general.  It had been over 4 years since I last worked.  Slowly, I began to see the warning signs that I was headed to a psychotic episode.

I tried to ignore these signs.  I didn’t want to jeopardize my job by taking sick days or needing time off to receive therapy.  My work schedule did not leave me with time to see a psychiatrist or therapist.  I figured once things at work slowed down, I would focus more on getting treatment.  Besides, I’d been stable for so long…maybe I didn’t need all that therapy anymore.  Maybe I could just ignore those signs and eventually they would go away.  If I just worked harder, I would be all right.

I’d been seeing a hallucinated man named Frank for about a month.  I’d seen and heard him earlier in the year, but he was pretty harmless so I tried to not worry.  Almost every night he would sit in the back seat of my car on the drive home or he was sit on the edge of my bed while I tried to go to sleep.

The week before Christmas, I really started to see signs.  I had trouble sleeping.  I was anxious.  I couldn’t focus as well.  My thoughts were getting disorganized.  My affect was blunted some of the time.  I was irritable.

I was the most stable at work.  Just before my first psychotic episode that led to the diagnosis of schizophrenia, work was the last place to be affected.  Work has a pattern.  It is reliable.  It is scheduled.  It is a routine.  I do well with routines.  Work can be an island in a sea of chaos.

The day after Christmas, work lost its stability.

I was anxious all day.  I had a 10 hour shift that ended at midnight.  The last hour of work, I started to hear Equinox.  I hadn’t heard her in over a year.  She told me to kill myself.  Over and over, she demanded it.

The drive home was a rush.  It didn’t process.  I just went through the actions of driving and ended up at home.  I wasn’t focusing so well on reality.  I was stuck in my head…stuck with the voices.

I got home and immediately called my neighbor.  He is my best friend’s dad and knows about my diagnosis.  I went over to his house and told him about the voices.  He asked me if I needed to go to the hospital.  I was hesitant.  In the pit of my stomach I knew it was necessary but one thing was stopping me.  If I went into the hospital and lost my job, I was worried that my mom would be disappointed me in.  She had been so proud of me for working again.

I called her in the middle of the night.  She told me that she wouldn’t be disappointed, that she was proud of me no matter what.  That settled it…I agreed to go to the hospital.

This was the first time I ever went through the process of getting into a psychiatric hospital in Kentucky.  It turned out to be a tiring process.  We arrived at the ER at 2am.  About 3 hours later a mental health assessor arrived to get the information from me that would be provided to the psychiatrist on call at the hospital they wanted to send me to.  About 2 hours later, I was told that I would be admitted to a hospital about 2 hours away.  The nurse told me that an ambulance was coming from that would take me to the hospital.  It took another 2 hours for the ambulance to arrive.  Another two hours went by riding in the ambulance.  Then I spent 3 hours in the waiting room of the hospital waiting for a bed to open up.

All this time I was going downhill steadily.  In the waiting room I remember rocking back and forth and staring into space.  It was getting harder and harder to stay in the present and focus.  I was just so stuck in my head.

In 2009, I described myself as having four moods.  Cotton, water, cactus, and butterfly is what I called them.  Cotton meant that I felt like I was wrapped in cotton gauze and trying to interact with the world through the gauze.

Now, waiting for a bed to open up, I could describe myself as cotton again.

Finally, I was admitted to a ward for the chronically mentally ill…mainly bipolar and schizophrenic.  Another assessment was done by two nurses.  I could barely communicate and could not make eye contact.  When I was finally brought to my room and left alone, I dropped into a long sleep.  It had been 26 hours since I last slept.  I stayed asleep for about 24 hours.  I woke up Saturday evening and emerged from my room.  At some point during the day my doctor had seen me but I didn’t remember this.  When they passed out evening medications, I found out that I had been taken off of Thorazine and placed on Risperidone.

Risperidone is one of the many medications I’ve been on that have not worked.

Unable to communicate this to the staff, I took my medication.  I then spent a couple hours in the day room staring into space.  In the middle of the night, I woke up, heart racing.  I lay in bed taking nice deep breaths.  Still, my heart pounded quickly.  I got out of bed and found a nurse.  She took my pulse and confirmed that is was very rapid.  I was told to try to relax in the day room and drink some apple juice.  About 2o minutes later I felt okay enough to go back to bed.

The next couple days went by in a blur.  For the rest of the weekend I hardly did anything but sit in the day room and stare into space.  I talked only when asked a question by staff.  I continued to avoid eye contact.  I heard Equinox frequently and also saw Frank often.  I don’t really remember the details of the first couple days.  My mom did call me at some point to see how I was.  I told her about the medication and she was not pleased.  After she talked to me, she called and spoke with the charge nurse, explaining that I’ve been on many different medications and that Risperidone was not effective.  She told me that the charge nurse made a note in my chart for the doctor, requesting that I be put on a different medication or placed back on Thorazine.  That night, I refused to take my Risperidone with the hopes that I would be on a better medication soon.

The next morning, my psychiatrist told me that he would change my medication.  Still not focusing well, it didn’t occur to me to ask him what he was going to change it to.  That night I found out he had changed it to Latuda, another medication that has failed me in the past.  When I talked to my mom again, she was not happy about this change.  Again she called to speak with the nurses.  The next night they gave me 1oomgs of Thorazine.

As the Thorazine got back into my system, I started reconnecting with the present.  We had up to six groups a day…which previously I had been going to but not participating in.  Now, I began to focus and enjoy the groups.

In the morning we had Community where we indicated how we were feeling, set a goal for the day, and discussed any community issues.  Next, we had art therapy.  Most of the time, art therapy was also attended by a therapy dog named Wilson.  I really liked interacting with a therapy dog.  Psychosocial education came next, followed by lunch.  After lunch was a process group led by a social worker.  Next was an activity group that usually involved beading or coloring.  This was followed by another psychosocial education group.  After dinner, the last group varied between watching an educational video or playing games on the Wii.

I enjoyed these groups.  Due to the nature of the unit I was on, not very many patients chose to attend groups.  Sometimes there would only be two or three patients.  Most of the time, I was the only one that participated with any effort and this was benefited by the years of therapy I’ve been in and my education in psychology.

As I recovered, I interacted more with staff.  Second shift quickly developed a routine for me.  At 7pm the television would be set to play Jeopardy.  Some of the staff and I would play along with the show.  After that one of the staff would play me at a game of Yahtzee or Phase 10.  Then I would take my medicine and go to bed.

I also got to know the patients.  One woman believed she was the devil then switched to believing she was the Lord.  One man alternated between roaming the halls shouting “Warning!  Warning!” and yelling the colors, “Black!  Orange!  Blue!  Yellow!  Red!” and so on.  Another man snuck in a can of dip, was caught, and placed on 1 on 1 for the rest of his stay.  1 on 1 means a staff person is assigned to you and must stay within arms length of you at all times.  Other patients refused to talk, talked to themselves, danced, dug through the trash, or crawled on the floor.

After 4 days of being on 100mgs of Thorazine, the doctor increased me to 150mgs.  I grew even more stable.  Another 2 days and I was increased to 200mgs.  Then I started asking when I could go home.  I had stopped hallucinating.  I was much more present in reality.  I made eye contact.  I communicated clearly.  I also spent most of my free time pacing in circles around the day room.

Thirteen days after I was admitted, my social worker returned to check in with me.  She told me that during the weekly staff meeting, my doctor indicated that I could go home if I agreed to attend an intensive outpatient program.  I agreed and was told I would be released the next day.  And I was released.

This was the longest hospital stay I’ve ever had.  This speaks to the level of instability I reached.  I did lose my job due to this hospitalization but I am also eligible for rehire.  I’d like to think that having a job had nothing to due with this episode but that would stem from denial.  I would also be in denial if I stated that I did not become a bit institutionalized during this hospitalization.

However, I am also doing better.  I’m not at my most stable but I am a degree of stable.  I am still not hallucinating.  In two days I see a therapist and get set up with a psychiatrist.  I am taking time to focus on my health again.

Schizophrenia is episodic.  I experience periods of remission and periods of psychosis.  I probably always will go through these episodes.  Each time, I gain more insight into the warning signs.  I saw them weeks in advance this time and this hospitalization was not a surprise.  They never are.  I always see it coming.  What I need to learn is to quit ignoring the signs.

I can assure you that I have returned to my usual high spirited self.  I’m in a good mood.  I look forwards to the future.  I am optimistic.  I am still me.

Things That Go Bump In The Night

I was started on Thorazine at the beginning of December last year.  It completely stopped all hallucinations.  But it didn’t stop the paranoia.  That just got worse. more…


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