March 9, 2015 at 2:02 pm #55552CuriousTerriParticipant
Hi my name is terri,
I just finished listening to some of Emmeline’s suggestions in the thread “Activism Resources”. With the suggestion of doing a narrative and so many in my life telling me I need to do a memoir, I thought I would practice here. I do also have a blog in Google, however I am still nervous of talking about my psychosis much. So please feel free to edit and critic in helping me here.
The first time I heard the word “schizophrenia” I was 9 years old. I was told that my closest friend and enemy, my older brother was taken to the hospital. It was because he was kicked out of school due to throwing his sneakers out the bus window. The day before he returned I heard the diagnosis and vowed to find a cure. As I saw him walking down the street toward me I thought “he looks like someone put him through a washing machine”. When he spoke to me with such gentleness I had never experienced, I was not sure if I like it or not.
The family soon split apart. My older brothers went to live with my dad and the older sisters were on their own. I read somewhere that there was a theory schizophrenia was due to B vitamin deficiency. I set my sights on going in to research in the area of nutrition. Around this same time my other older brother and one older sister had come down with this schizophrenia illness.
I was accepted in to a program of nutrition in a university with high recognition in this area. It was there I began to realize the importance of keeping my secret of who I really was. My response to life was quite unique. What I considered spiritual was socially unacceptable. In addition, my physical reaction to “partying” was extremely unusual.
The fears were exasperated by the fact that each of my siblings were getting worse under the psychiatric care they were being given. My drive to understand it all, led me to go deeper into the mystic realm. At the same time I denied any phenomenal abilities to the authorities.
I quit college, hitch hiked around a bit, and got married. My life began to show outward signs of destress that I took as more reason I have a higher calling. It seemed evident in my mind that the only reason a spiritual being would do battle with me is to shut me up.
I did go back to college to become an accountant. I also completed studies in bible college to be a better equipped Christian missionary. I accepted the call as a single mother of three to travel from Ohio to Los Angeles. I first worked on staff of a Christian church in Ohio.
It is while living on the streets outside of LA, I began to weaken to the pressure of the community. My family had long since felt I was too extreme in my religious beliefs, the friends I encountered wanted me to calm down, and coworkers/bosses felt I was just weird or anti-social. I just kept reminding myself that all mystics and prophets are rejected by society. One day though, after repeated recommendations, I followed the suggestion to ask my doctor for an antidepressant.
That was fall of 1999 and I was living in a homeless shelter. My violent physical and emotional response was immediate. Neither the doctor or social worker gave me any warning of “side affects”. I got such cotton mouth I took a 2 1/2 gallon jug of water to my room. The house manager yelled at me that was not allowed. I heard myself tell her “I don’t care, I need it”. I could not believe that was me being so defiant. There would be more instances and indeed I was kicked out. A few days later I returned to get my mail. The other tenant at the door refused to give it to me, according to her authority. When she tried to shut the door on me, saying she would call the police, I kicked her across the room and demanded that she indeed call the police.
It felt like an out of body experience. WHO THE HECK IS THIS PERSON! I was the girl who curled up in a ball so the other girl in a fight could only punch on my back.
The good doctor simply changed my medication. Surely this would fix it. Now I’m going bouncing from hotels, parks, camping grounds, and soup kitchens with three children. I would become so dizzy it felt surely passing out was the only relief. I had to stay conscious for my kids, though. A fellow homeless veteran explained that I can not be in the sun while on Paxil.
At some point I quit taking the medications. I get pushed to the top of the 3 year waiting list for housing due to a court situation and move into an apartment. Now my life truly spirals out of control. The isolation and pressure of three children (two that are deaf) are more than I know how to deal with. When I confide in a friend it is suggested to get “help”. I turn to the government respite program to provide physical relief. Possibly house cleaning, child care while I look for work, and support teams.
Oh how naive I can be. The social worker comes to my home several times just as sweet as can me. She will give me time management training, parenting classes, and a shrink as my support person. I do not accept the medications the shrink suggests since the previous experience clearly indicated I became much worse.
A few short months later the social worker has completed her notes and analysis. Little did I realize she was preparing a case for my children to be taken from me by the state of California. They are snuck away in the night while under the care of a respite worker I so naively trusted. I get a phone call and am told I must appear in court in 72 hrs. In court I am not allowed to say a word as the lies begin to pile up. Stupid me, I comply with the “no speaking” demand.
I next begin the process of jumping through hoops in an attempt to have my children back in my life. A year later I’m admitted into the hospital due to a suicide attempt. It is there, I am made aware of the severity of sleep deprivation. I was not crazy. I am simply responding to trauma and in need of tender, loving kindness to heal.
I was also told by the psychiatrist that dry mouth and violent explosive reaction to antidepressants are common. It was in the waiting room that I got another most unusual lesson. A man behind me began to thrash around on the floor and scream “I’m going to f**k her” (meaning me). The less than compassionate doctor asked if I was scared. I said that I was not. (heck that was Tidily Winks compared to my family…LOL) The doctor next said “he is just a homeless man trying to get a bed in the hospital”. I thought to myself “well give him one. If it’s a performance, I rate it as excellent.” I also regretted my “not afraid” statement.
I ended up signing adoption papers to release my children to the “nice family who loved them”. I filled out all the detailed medical history, including the sibling diagnosis of schizophrenia.
Once again I found myself in the psychiatrist office. I did not know what was going on, however at times I would become so overcome by fear I stopped breathing. A friend gave me this pill called Xanax and it really calmed me down. I go to the mental health office and explain my experience. The intake worker puts in my file “asking for Xanax and involved in a cult” My heart is crushed. Once again, I have opened my heart to be plummeted.
I do end up talking to another psychiatrist. He tells me “Oh they have a name for that, it’s called Panic Attack”.
I share my fear of becoming a zombie. He gives me the prescriptions. After several months I explain that I feel like a zombie and is there another medication to try. Upon questioning he gets me to admit I “hear voices”. He saids a bit too loud “Why didn’t you tell me you hear voices?” Oops this is bad. He gives me the prescription. On my way to the pharmacy I look at the paper. He has doubled the dosage of the medication I felt like a zombie on. It was Risperdal. I throw the script into the trash.
There was one more attempt at medications and quitting that I would try before committing to stay on in 2005. That third time I quit I experienced DT’s that really scared me.
I found a psychiatrist that also did therapy. It seemed perfect. He explained that I was schizo-affective and what that meant. It was a bit disturbing when he said “don’t read about your medications, it will only scare you” (let’s see isn’t that what the priest told me about reading the bible as a little Catholic girl…..mmmmmm) Oh yes, and this good doctor was a fine Christian. He assured me my spiritual life will become all the more alive and real. He discussed matters with me and worked to change the medications if necessary. His assistant would often say to me “Don’t ever quit your medications. You may not come back.”
It was not long after that my older sister was rushed to the hospital due to heart fibrillation in the night. Among other medications, she had been on Haldol for over 20 years. Another sister and I went to the hospital to visit her. She slipped into a comma and they could not find any brain activity. The husband was able to override my sisters DNR and she has been in a vegetable state since that time.
So certainly my psychiatrist’s assistant knows what she is talking about. On top of that my life starts to become “stable” in 2007. I move in with a wonderful man in a nice small town. I find a good psychiatrist and even enter into regular therapy. The therapist often complements me on how “insightful” I am. At times the therapist says I do not need to see her since I am doing so well.
I become very involved with a 12-step program also. Something seems very odd, though. I’m told “you are the most laid back person I know”. I simply think perhaps I’ve changed. I’m a better person know.
Then that wonderful day comes in the summer of 2012. I have an “episode”. A bit later I’m told my medications must be adjusted because I have been manic. Some examples of being too happy are sighted to me and I am convinced. I go back on Ability. It had caused me issued in the past, however it is necessary to “stabilize” me.
Within 30 days my husband is so frustrated with me he threatens divorce. For the next 6 months I change medications, psychiatrist, and therapist. I became so catatonic during that winter it can only be compared to the “pass out and come too” type lifestyle. I was now on 2 different antidepressants, a mood stabilizer, an anti-psychotic, and calming tranquilizers. Also, medications for high cholesterol, hypothyroidism, and a prescribed C-Pap for sleep apnea. Yes, of course there were the daily prune juice and MiraLAX treatments, too.
In addition, my digestive system problems were so painful I often curled over in pain. (This was even worse that the previous 10 years of extreme constipation.) I had some sort of severe mouth issues that made it difficult to swallow. As a last resort I told my family doctor I must get off these medications that are causing me such crippling pain. She agreed to work with me. I did not trust her, though. The Levothyroxine she had put me on several years earlier was never properly explained to me. When I called this doctors office to inquire if it might be contributing to my insomnia problems, the nurse asked how I was taking it. I had been taking it wrong for several years. I was not made aware by the doctor, it was not on the bottle, nor did the pharmacy tell me.
I decided to go back to my health and nutrition studies of the past. I dug in and weaned myself off all the prescriptions. At the same time I changed my meditation practices, exercise routine, what I ate, and used supplements & herbs. It was a most excruciating process, however the first reward was “no more sleep apnea”.
You see my husband said that I snored so loud he could not sleep. After several home remedies I talked to the doctor. The sleep study showed I had sleep apnea. Naturally I had taken my normal medications before the test.
Now without the medications, my husband said I did not snore any more.
Next thing was my cholesterol was very good and my thyroid was perfect. The mouth problem turned out to be severe genitives. The specialist wanted to do surgery to the tune of $3,000. Since our insurance did not cover that I went to a Naturopath instead. She made me away my mouth did not produce enough saliva and how serious that is. It is actually made worse by drinking too much water. I have not doubt it is the result of the many years of psychotropics.
I began to hike, run, and do yoga with a new passion. I still had a lot of trouble sleeping,however I was willing to keep with the regiment I was one. My husband even began to enjoy a new diet, run, and lose 35 unwanted pounds.
Unfortunately, the marriage deteriorated into ending in May of 2014. It has set into motion of flashbacks that cause emotional and physical issues. I feel rejected by my family, friends, and the medical profession.
The most important thing I do now that has gotten me through this last year is staying present. I have accepted the wisdom of now escape. In every attempt to bandaid, anesthetize, or run away, I have found it like struggling in quicksand. It only makes matters worse.
I also embrace the vow of a little girl to “cure” or in some way pour salve on the emotionally distraught schizophrenics.March 20, 2015 at 4:14 am #56096GipselParticipant
Long and interesting story. Hope is is all allright at you. Good luckMarch 27, 2015 at 9:42 pm #56449uprisingParticipant
Wow Terri, you’ve been through so much. I’m sorry to hear that you’ve been having flashbacks and feeling rejected. And I’m so sorry that you didn’t get the healing loving-kindness you needed and deserved when responding to trauma. You must be a very strong and courageous person. Thank you for sharing this.
March 27, 2015 at 10:33 pm #56453CuriousTerriParticipant
- This reply was modified 6 years, 8 months ago by uprising.
Hey, yes I just scrolled down. That sure is long. Sad thing is that is a very, very condensed version. Thank you so much for reading.
I would not say I am not a courageous or strong person by nature. There has been this overwhelming compassion and desire to reach others which seems to inspire me. I mean when I am able to get past a struggle and understand how I did it, I can help others do the same.
Not sure why, but I got that is our purpose when I was a very young girl. so many I meet have the desire to want to help others, however they have never gone through anything. I admire them for attempting, yet realize until you have walked a mile in someone else’s shoes you can not know how it feels.
Thanks again for reading my story.
tOctober 10, 2015 at 1:13 am #67485betsycamParticipant
Truly inspiring. I am in awe of the fact that you managed to come off so many drugs and live to tell the story! I am trying to come off of two, after a failed attempt to come off Effexor last year. I did not realize that all the suffering I went through was withdrawal, and ended up on Remeron, and when that failed, on Effexor again.
I have read a lot about schizophrenia and how it is possible to heal and function without the drugs, and that the drugs keep people psychotic while those who take them short term or never, actually do much better over the long haul. Sadly, two boys in my childhood neighborhood became schizophrenic and one finally took his life after many years of medication.
So, I commend and celebrate your journey!
BOctober 10, 2015 at 8:11 am #67489littleturtleParticipant
omg…wow…what guts…are you still there terri…we could learn a lot from you…
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