Mental Health Treatment: Our Group Home Experience

[**none of the photos in this blog entry are of the actual people involved. These photos are stock images**]

Brief background info: My daughter Laura has been diagnosed with over 6 mental illnesses that primarily stem from childhood trauma and a secondary trauma as an adult.  Her most prevalent issues that are the heart of her treatment are bipolar disorder, dissociative identity disorder, and addictive personality disorder.

Laura recently came to me and told me that she had been off her meds for quite a while and felt like her life was spinning wildly out of control and that she felt she could no longer parent her child and wanted him to live with us while she went to the hospital to get stabalized back on her meds and address some of the trauma issues with a therapy she had never tried called EMDR. This therapy has shown some very powerful results in the research and literature.

We made the plan for Laura to go into the hospital and then she would be discharged to a group home where there would be 24/7 supervision to monitor medication compliance, and overseeing her activities of daily living.  The one thing that known to be very helpful in the treatment of bipolar disorder is extreme structure.  When left to themselves they often crash and burn because they do not tend to have the abilities to stay on top of the discipline needed to manage their daily lives. Laura's sitiation is a bit more complex when you figure in the dissociative identity disorder (formerly known as multiple personality disorder). The basic understanding of this illness is that the trauma is so severe that the personality splits (compartmentalization) into fragments (altars) that can each handle a part of the trauma that the patient cannot process.  When Laura gets under extreme stress, the altar Amy Knight makes herself known.  Amy is fiesty, fiery and has a zealot protective force about her concerning Laura's well being. She is no nonsense and little care for niceties. She cusses like a sailor which mortifies Laura when she learns how Amy expresses herself.  There are other altars, but Amy is who we most deal with.

Laura's traumas were severe.  She was raped by a church volunteer who worked with the children when she was 10 years old-- on church property. We did not learn about the abuse until 3 years later when she began cutting. (OK- this picture is Laura's actual arm when she was in ICU at age 13.)

When Laura was 20 years old she was engaged to be married and under the influence of drugs her fiance took an execto knife and sliced her legs to bloody ribbons.  It cut through to the muscle and she needed stitches but he was too afraid to call for medical help so he left her to bleed out and she almost died.  That relationship was over. But the trauma on top of trauma still wrecks it's havoc on her daily life and ability to cope, love and trust people.

So Laura spent 3 weeks at the Trauma unit at Timberlawn Hospital in Dallas to get stabalized, detoxed from drugs and alcohol and back on her medications to help manage the bipolar disorder, anxiety, depression, and insomnia.  They began the EMDR therapy and she is following up with her individual therapist who is also an EMDR therapist in Southlake. When she discharged last Friday she stayed with us and we took her to the group home on Saturday.

And here's what happened:

When Laura entered the hospital we made arrangements with the group home for her to move in on discharge. They required a $250 deposit to hold her bed and that would be applied to her first months rent which is $600 (includes room and board.) So when we moved her in we only need to pay the balance of $350 for the month of August.

Upon arriving at the home we paid the we paid the remaining $350 and were immediately told that we were $250 short.  I explained to the woman who had accepted my deposit that we discussed how the money would be applied to the first month rent and only the balance needed to be paid on admission. She stated no-- that everyone had to pay a deposit plus the rent.  I told her that is not what we had discussed and we were not prepared to do anything else. This was the house manager and she said she would call the home owner.  There was some discussion and ultimately agreed they would accept that if they could use $175 of my daughters food benefits.  I was a bit taken back.  It just didn't make sense. We were told that room and board were included in the $600. But they refused to let her move in unless she allowed them to use her food benefit card. (ie, welfare fraud by coersion).

We were between a rock and a hard spot because we had no where else to take our daughter who just spent all but $120 of her social security disability check to move into the home. So we moved her in despite my great reservations.  I had enough red flags alerted in my spirit that I made some calls after I left -- but I will get to that later.

We went upstairs and moved Laura into her room and met her 19 year old roomate Angela.   The two

became instant friends and really hit off.  She jumped right in and helped Laura unpack and get her things in order. She shared about her own story as well. She said she had been off her meds for about 5 months but was going to the doctor this week to get started again. [Mental note: why does a group home allow a patient to go 5 MONTHS without meds? She has medicaid!) Angela proceeded to tell us that she had been having serious insomnia and the doc would put her back on the trazadone she used to take to sleep.  But she had not seen the doctor yet, nor did she have a current prescription, but she said the house manager "helped her with that."  She told of one of the other residents being in the hospital and the house manager went into the absent girls medication bin and took some of her trazadone and gave it to Angela since she would be seeing the doc soon and getting back on the prescription anyway.  (ie, practicing medicine without a license and stealing another patients medications!! Drug trafficking??) My blood ran cold. Stunned. Shocked....and having nowhere else to take our daughter!!!  We live in a small 2 bedroom apartment. Our son is home for summer from college and we also have her 4 year old son Jesse living with us while she is in the group home. So I knew I had to start looking for new options ASAP.

I had a friend who is a nurse and also has a daughter in a group home. I called and shared my concerns with her to see if I was just over-reacting and if she could help me find a different home.  She called the home owner where her daughter stays and they had a room available that Laura could move into the next day!!!   So I breathed a sigh of relief!!

I picked Laura and Angela up for church on Sunday and took them to a church close to their group home.  They loved it.  After church I took them home because the house mom - who lives on site 24/7 (different from the house manager who does not live on site)  was going to take the girls to her daughters birthday party. The residents are not allowed to stay at the home alone so if the house mom had a party to attend the residents went with her.  Sounded innocent enough... a child's birthday party!

I get a text message at 6 am on Monday morning, "Mom, is that other room still available?"

I immediately sat up in bed and began a long text conversation with my daughter that ultimately ended up in "CALL ME NOW!!"

Laura had been in the hospital for 3 weeks. She was detoxed and had 23 days sobriety upon checking out of the hospital. She was balanced on all of her medications and had been more stable than we had seen her in months!  I was NOT prepared for what she said next...

"Mom, the birthday party was not a child's party. She has an adult daughter and they were serving all of us alcohol! I know I messed up. I'm sorry. I can't stay here. I will never be able to get better and stay better if this is how they operate.

I admit--- I immediately remembered my old high school vocabulary-- I uttered some expletives with great volume that my husband sat straight up in bed-- knowing something was REALLY wrong! (please don't judge!) I was not angry at Laura in any way.  I was beyond LIVID that the mental health care facilty we entrusted with her care, on her second say at the home and only 2 days out of the hospital, has a STAFF MEMBER take the residents to a personal family party where ALCOHOL was served! Remember Angela is just 19 years old-- not even of legal drinking age.

I gave my obligatory parental speech about personal responsibility for her own sobriety and wellness, but I also let her know that it was not ok for the professionals to expose her to that kind of environment!

Brad and I immediately made plans to go pick her up and move her to the new home. By the time we were heading that way we got a call from the house manager wanting to know wht Laura said we were moving her to a new home. Brad told her we would talk to her when we arrived.  About 10 minutes later we get a text from Laura telling us that she thinks it can all be worked out and that she shared with the house manager all that had happened. The house manager said she was able to address all of Laura's concerns and needs and this was nothing that couldn't be worked out.  It's a good thing it was a text message or everyone would have clearly heard my crystal clear "OVER MY DEAD BODY!" We kept on driving, maybe a bit faster, realizing that Laura was now having a conversation with someone with a vested interest in keeping her and her disability money and benefits at that house!  Laura does not deal with confrontation at all. She hates dissapointing anyone.

When we arrived the house manager met us outside. She said she wanted to talk to us and let us know she had already worked everything out with Laura and that she wants to stay. She said "It's Laura's decision to make, she is an adult." That just rubbed me wrong.  I had text messages telling me exactly what Laura wanted to do. I felt she was being coerced.  So I told her we wanted to talk to Laura. She said it wasn't necessary and that she was asleep. Brad told her to go wake her up-- and he did not ask it as a question!

She came downstairs very groggy and a bit disoriented. The house manager led the conversation and said all that she had said before in front of Laura. Laura said she felt it could all be worked out. At that point we told Laura we would take her breakfast and told the house manager we needed to talk to her alone. We could tell her issues of not wanting to dissapoint anyone were overriding her common sense. We went to McD's and I told her that she at least needed to see the other house and talk to the leadership there and share her experience and get their take on if it was a bad situation (we were already convinced and concerned about even the legalities of what had happened!)

So we went to look at the new home. Before we ever got there I shared my observation with Laura:  look at the house real good.  If it is decorated, has curtains, pictures on the walls, can you agree with me that the other house you are at is just more about getting your money than making you a home?  She laughed.... I wasn't joking at all!  The house she was currently at was a beautiful 2-story home, but there were no curtains on the windows, no wall decor, not even soap in the bathrooms to wash hands.  There were merely beds for residents and broken down dressers for clothes. It was a barren environment and felt very much "institutionalized"-- not like a HOME.

The new home was as I expected it would be-- beautifully decorated walls, plush couches with huge pillows, a den area with some gaming systems for the girls to play, the kitchen was huge and you could tell is was used for group therapy and occupational therapy too!  There was an activity calander on the wall of the months scheduled activities. This is what I envisioned a group to be!!  Laura was SOLD!  We were moving her out that day!

When we arrived back at the original home things went down hill FAST!!!  We simply informed the house manager that Laura chose to move to the new location.They became insistant that we give them another chance and began to litterally BEG laura to stay 2 more days or even 2 weeks and that would resolve all her concerns! Laura had tears in her eyes and was beginning to cower into herself (normally a definite sign that her DID was kicking in and a "switch" was in process-- welcome Amy Knight to the scene.) I looked at Laura and told her to just pack and not to discuss this further with them. I addressed the woman directly and told her to not make this any more difficult than it was and that there was no more discussion to be had. We were moving Laura to the new home. She continued to try and persuade Laura when Brad showed up in the door way.  All conversation stopped and the woman left the room.  Laura's room mate Angela was inconsolable.  She was a crying mess. She was saying that the woman had told her while we were gone that it was her fault Laura was leaving. We did all we could to assure Angela that she had nothing to do with Laura leaving and it was not her fault. I told her once we got Laura moved in we would come back and take her to lunch with us so the girls could have time together before Laura left.

We moved Laura into the new home. While we were unloading her boxes the house manager from the OTHER home showed up to the house and walked into the home and just stood in the kitchen staring Laura down. We told her to say nothing to her and Brad and I positioned ourself where the woman could have no conversation with Laura.  Apparantly she had FOLLOWED US to the new home and now Laura was completely terrified. She was looking for the house manager at the new home and began to tell her how much of a trouble maker Laura was -- we were wondering if she was trying to sabbotage Laura's ability to come to the new home! The woman finally left.

We had one last trip to the old house to get Angela for lunch and pick up Laura's phone which she had left on her bed.  I took the girls to lunch and the conversation that unfolded disturbed me greatly.  Angela had said that the house manager continued to tell her that it was her fault that Laura left and that "there would be hell to pay tonight for her running Laura off."  I took a deep breath and asked her what that meant-- "have they ever been physical with you?"  She said no, but they have threatened to hit before and she is afraid of them-- so she just does what they say to avoid problems.  That is when she told me that they said she had to be back in an hour.  I thought that was odd. I questioned her further:  "Are you on house arrest? Do they have power of attorney over you?" She answered no to everything.

I began to explain to her the "Patient's Bill of Rights" and told her what we were told were the house rules were--- you are allowed freedom of movement as lond as you communicate where you are going, who you are with and when you will return to the home.  So I asked her if she wanted to go back home because we were within 10 minutes of the hour mark. She said no-- her and Laura wanted to go to Starbucks and use the wifi.  So I told her I would contact the house manager and let her know we were running longer than expected and that the girls were not yet finished with their wifi project and that Angela would be home at 5 pm.  We got an immediate text response back saying "NO. Angela will be home by 3:30 or she will not be allowed to see Laura again." (eg, coersion by manipulation and abuse of patient rights to freedom of movement.)    Angela did not want to go back and I told her I did not feel safe or comfortable taking her back since I did not know what was in store for her with "there is hell to pay tonight for you making Laura leave."    

I called the house owner at the new home to let her know what is going on with Angela. It turns out that this house owner is the boss of the boss of the other other house owner! She told me to absolutely NOT return Angela to the home and to bring her to the new home. She said she would personally go get Angela's belongings the next day and take care of both Laura and Angela's financial business herself so we would not have to further encounter the aggressiveness of the other home owners.  PERFECT! PROBLEM SOLVED!! 

Or so we thought....

It sounded like everything was resolved. I left the girls with Laura's car getting gas and going to starbucks then returning to the new home together. I went on back to the MidCities.  About 30 minutes later I pull up in front of my home and see the old house manager had texted me that the owner at the old house said to call police on us for removing Angela from her home.  Well-- as a professional I knew better and just called the bluff!  I ignored her. I knew that Angela had no legal reasons that she could not have freedom of movement, she was an adult, and only had to follow the curfew rules of the house so long as her whereabouts were communicated to the house managers.  The new home knew their whereabouts.  So i just ignored the message.  A few minutes later I get a frantic phone call from Laura, in tears telling me the police were on their way-- I was STUNNED!!!  The more I listened to her I was even MORE STUNNED!!

Laura was the one who initiated the 911 call and the police coming to her rescue!!  It turns out that the old house manager had driven around to try and locate Laura's car and get Angela to rerurn to the house.  The woman pulled up behind Laura and then Angela recognized her and said it was the old house manager.  She began tailgaiting and honking at Laura.  Laura drove faster and even ran a red light to get away from her.  The woman sailed through the red light too. She pulled her car along side of Laura's car and almost side-swiped her and ran her car off the road into a parking lot. The woman proceeded to get our of her car, and begin baging on Laura's windows.  Angela had already been on the phone with 911 as Laura asked. The dispacher was telling them not to open the window or talk to her and try to remove themselves from the situation until the police arrived.  Laura thought with her out of the car she could finally go around the car. As Laura pulled hard left to go around the car that was cutting off the lane in the middle of traffic she nicked the open door of the woman's car and it bent backwards-- but Laura was able to get the car to safety away from the woman and 3 squad cars came to their rescue!

The woman attempted to tell the police that Laura had abducted Angela from the group home! The

police had very rational conversations with the girls to discover they were both adults and could live where ever they wanted to live.  So he went to express that to the woman who was none too happy with the news.

I am just at a loss for words! There is NOWHERE in my all my mental health and social service experiences to file this bizarre exchange in my brain! It just does not compute!  The girls told the police they would like to file charges. They will have a detective come to the new home and take a statement. A restraining order will be requested.

The girls arrived at the new home safely.  And if it weren't bad luck they'd have no luck at all (as the old song goes)..... there must've been something funny in the water in Fort Worth yesterday!!  When they arrived home, 2 girls had gotten in a fist fight becuase someone stole $10 from a girls belogings.  Laura was beyond consolation at that point and went and cried herself to sleep.  (Everyone did tell us that was bizarre and was not the norm for the household!)  Laura said everything was perfect this morning and, it was like all was right with the word, and things were as they should be-- somewhat normal for the mental health community!

So I knew what I had to do today. I had to make the official reports to the state agencies! My first call was to Adult Protective Services (APS).  I explained all that had transpired down to the police report and charges being filed.  They began to look up the group home and informed me that the home was not licensed with the state and that I would need to call the Dept of Aging and Disabilities to file the complaint because it was out of the jurisdiction of Adult Protective Services.

So I made the next call to the Dept of Aging and Disabilities (DADS). I give them the whole story and they said APS had it wrong.   DADS cannot intervente unless the facility is state licensed, but that APS is the only agency that could investigate a non-licensed faciltiy.

Licensed VS Non-Licensed Facilities

So today was a new education for me! In order to be a licensed facility in Texas the patients have to have a certain level of care needed.  The patient may not be able to move without assistance, or must have assistance using the bathroom or bathing, or is completely invalid and unable to do activities of daily living for themselves.  That level of patient care is required to have a state license.  Any other facility is not required to have a license to offer services to the public.  Most mental health group homes have very high functioning adults that need only minor oversight for medication compliance and general supervision to make sure they attend to their activities of daily living and may occasionally need reminders to take a shower or do their chores, etc... but over all very high functioning people who need more oversite and supervision that the average healthy person. 

This is the danger of most mental health group homes.  There is no need of a license and therefore no regulation or overseeing organization.  The risk of abuse to the residents is high.  Many residents in these homes have the home manager or owners as their "payees". In this situation all SSI checks are made out to the owner/manager as opposed to the patient.  The owner is supposed to take the contracted amount of rent out of the check and keep the remaining as an allowance for the resident as they have need of personal items or expenses.  Many times the resident never sees the remainder of the funds and they are pocketed by the owner/manager.  This is not to say all homes are run by immoral or unscrupulous people lacking in integrity-- but it sure does leave the field wide open for abuse to those who are so inclined to not be honest.

Then there is the medication management aspect that is also ripe for horrific abuse!  As Angela pointed out, the house manager took the meds of a patient who was in the hospital and gave them to her.  She also said that there were several instances where some of the residents came up short on their hydrocodone (pain med). The meds are supposed to be kept under lock and key away from the patients and to be taken under supervision.  So when patient's run out of narcotic medication for pain before their script is complete-- you can see where there is the potential for managers/owners to be using the meds for various and illegal purposes; or even financial gain.

I don't know what the solution to the problem is.... but I know there needs to be some attention drawn to the quality of care in mental health group homes as they are ripe for abuse and neglect of the mentally disabled who have little recourse to defend themselves.

I dont even know where to begin-- so please share any ideas or insights!!

Blessings,
Dawn

 

The Paradigm Shift-- Exploring Alternatives to Medication

It was a dark and stormy night,,,, don't you always have that ominous feeling when you walk into the psychiatrist's office? 

As many of you know, we have been on a journey to help our daughter from the dibilitating side effects of many of her psychotropic medications.  She recently began to have tremors, not just shakey hands, but rather Parkinsons type jerking that was involuntary.  After talking to her doctor, he recommended we stop the Geodon immediately and then proceeded to ask me what medications she was taking.  We had called him after hours, so I did not expect him to have her chart memorized.  I began to list the 7 meds she was taking: Geodon, Lamictal, Prozac, Trazadone, Xanax, Ambien, Focalin... and there was SILENCE on the other end of the phone,  After a moment he asked, "Did I prescribe all those meds?"  My heart Sank.  I reminded him that my daughter also saw his nurse practitioners, but that YES-- his office staff and himself had prescribed all the meds. 

I shared my concern with him about her being over medicated. He agreed.  He said to stop Geodon immediately and get to his office ASAP monday morning so we could begin the process to wean her off the meds.  When we arrived at the office we were seen by another Nurse Practitioner. We expalined the conversation we had with the doctor over the weekend and that we were here to get her weaned off the meds. She agreed that we should stop the Geodon (which is good, we already had at the doctors orders!). But when we began discussing weaning her off all the other meds and titrating her doses down, she said that she wanted to raise her lamical dose by 50 mg!!  I protested and said the point of this visit was to get her off the meds, not increase her doses! She explained that she would feel better lowering her doses if we got her into an EMDR Therapist to deal with her trauma issues. We agreed and made the appointment the same day. But she still insisted that Laura increase the Lamictal since we were removing the Geodon.  It was as if it never occurred to her that the meds could be the problem.  (NOTE: Lamictal is a med for bipolar disorder. Laura was diagnosed bipolar just 3 weeks post partum.  Women post partum are typically a hormonal mess for a few months after giving birth.  So we have wondered if the bipolar diagnosis was even accurate.)

Laura and I left the office a bit defeated.  We did not get what we had expected. I told Laura to try it for a week. If she felt the symptoms were worse to go back to the original dose and then we would titrate down ourselves.  She did not make it a few days before the side effects of the higher dose began to bother her. Being concerned about the toxic build up in her system, and seeing that she was already experiencing Tardive Dyskinesia, we decided to seek alternative treatment options to help detox her body from the chemicals and toxins.

We sought the help of Chelsea Barlow, CNHP (Certified Natural Health Practitioner) and FB page: www.FaceBook.com/AllGoodThings4You.
Her website is www.AllGoodThings4You.com. 
Bio-Energetic Practitioner. Her

When we shared our concerns for detoxing Laura with Chelsea, she explained the process like this:

My goal when working with the client is to FIRST make sure their body is READY to detox. I have recommended Laura start out on whole body support to get it there. The protocol I use is called the Opening Channels Program. The purpose of it is to nourish her body in it's s most basic needs. Her neuroendocrine system is being supported with a homeopathic product called Rehydration that makes water better. It aids the cells to better uptake water, supports her hypothalamus and therefore, improves cell-to-cell communication.

Next, ionic trace minerals to bypass digestion and nourish cells quickly. She is using a super easy to digest white fish protein to help rebuild tissues. Probiotics, because we must have a healthy gut flora. Digestive enzymes, because we live in a world of "Frankinfood" and poor farming practices. And the final two are to clean the colon and the filtration and drainage systems of her body. The goal is to heal her gut, support cellular communication and nourish them, and to clean out the junk floating around all her cells so that when that gets clear, we can start to encourage her body to clean out more deeply. Deeper detox will need to wait until her body is ready. She is my most toxic client to date. Her body needs time to clean out. I respect the fantastic work that she has done so far. She's come a long way and there is MUCH more to do.

Once her body is ready for a deeper detox, we will use homeopathics and high quality supplements to support her further. My goal with her is to give her what her body needs so it can heal itself. I believe that Masterfully created, the body absolutely has the ability to heal, if it is given what is needed. I don't work with diseases. I don't have "cures." I help lift off the toxic load and aim to give what the body is truly asking for because it WANTS to heal and was designed to. 

Chelsea has been a God-Send in our life! God has strategically placed the perfect people in our path on this journey to save Laura.  Laura has now been on this protocol about 6 weeks and we are starting to see glimpses of the daughter we used to know! She is in there! She is much more clear minded and PRESENT with us; not just "the zombie girl" that we had come to expect.  

I can't tell you what it does, as a mom, to see her smile again, to see glimpses or her... at times tears sting my eyes when I hear her laugh because it seems like she has come back from the dead-- and there is a part of me that fears if we don't get this right, we will lose her again to the meds.  But day by day she seems to be thriving more and more. She has gone back to college this semester and seems to be excelling academically, emotionally, and in her physical and mental health!

Our next step on this journey is with a Naturopathic Doctor in Flower Mound, TX, Dr. Gary Sconyers. We will be looking at Brain Mapping which can actually show how specific parts of her brain are functioning. The Brain Map can determine if there is over or under activity is specific areas of the brain and then target those areas with exercises that retrain the brain and create new neural pathways of processing information-- something medications can never do.  It's like Chelsea said, the body is DESIGNED to heal itself. If the body is given what it needs it can repair itself! In Laura's case, she does not need meds to numb her ability to feel anything, she needs to know why her brain is not working properly. Now that we know there is a way to discover that without the use of psychotropic meds, we are moving full steam ahead in the fight to save Laura!

For more information on Brain Mapping you can go to http://www.hrcoftexas.com/
For Info on Neurofeedback that has been in the news go to http://www.hrcoftexas.com/news/

The Irony of it All: Tardive Dyskinesia

Laura came by our home tonight to visit after taking her final exam.  She looked a bit frazzled and shell shocked, so I assumed it was likely just after test stress relief. We started talking about her medications and setting up an appointment to talk to her doctor about titrating her dosages to a lower dose.  She reached her hand out to pick up something and what I saw... I was completely unprepared for.  I have seen her hands shake before, bit this was not a shaky hand-- this was a full tremmor.  Not only was her hand tremmoring, her jaw and neck were having tick like twitches. It looked eerily like someone with Parkinson's disease.

Now the irony of that statement is that earlier a friend and I were discussing the recent suicide of actor Robin Williams. I questioned whether he might have been taking psychotropic meds and if this could have contributed to his suicidal decision. She had responded that new media coverage had reported that Williams had recently been diagnosed with Parkinson's disease. I had shared with her there there is research now showing that long time use of psychotropic medications is related to a greater risk of neurological diseases such as Parkinson's, dementia and Alzheimer's disease.

Within hours of that conversation my daughter is standing in front of me with Parkinson's-like tremors that has me really freaked out. I called her doctor's emergency after-hours line and asked for a call back!!

She was asking me if I had anything for a headache so I gave her some naproxen and then went back to searching the side effects of the one med that is most concerning us, Geodon, while we were waiting for the doctor to call us back.

This is what I discovered about Geodon on the National Institute of Mental Health (NAMI) website:

What are possible side effects of Geodon^®?
Common Side Effects

·         Headache, anxiety, upset stomach

·         Feeling dizzy, drowsy or restless

Remember that headache she was asking for pain relief for?  Laura has suffered with migraine-like headaches for years. She is highly medicated for ANXIETY (a side effect of this med!!) She is always nauseous, but we sort of wrote it off to the cocktail of meds she was on and thought it was just something she would have to adjust to. :-(

Now if anyone knows my precious girl.... she is ....well....just NOT graceful!! My beloved Laura is just klutzy, two left feet-- she is often dizzy and uncoordinated.  (Can you hear my Mother GUILT tugging at my heart?)  It was right there in black and white! These are the MOST COMMON side effects of the meds.

I took a deep breathe and began to read further.... now on to the SERIOUS side effects of this medication:

      Serious Side Effects

·         Some people may develop muscle related side effects while taking ziprasidone. The technical terms for these are extra-pyramidal effects (EPS) and tardive dyskinesia (TD). Symptoms of EPS include restlessness, tremor, and stiffness. TD symptoms include slow or jerky movements that one cannot control, often starting in the mouth with tongue rolling or chewing movements.

The doctor finally returned our call and we explained what we were seeing in the video above and how these symptoms had just started to occur over the last 3 days. He asked why she did not call sooner-- and she said she was afraid if she mentioned she was having side effects that he would up the dose.  He instructed her to stop taking the Geodon  IMMEDIATELY. No titrating down, Stop immediately! He asked us to call the office first thing Monday morning (as they are closed on Friday) and they will work her in ASAP. I asked him if he would be willing to take her off everything except the ones we knew were working well, and before all these others symptoms started.  He said he would like to do that as well!  OK-- my faith is a little bit restored that her doctor was actually listening to my concerns of what I was seeing.  It did not hurt that I mentioned I was an LPC and was very familiar with bipolar and mental illness. He agreed with my observations and concerns :-)

Heart-breaking as this is-- I think we have just hit a major MILESTONE!  Her psychiatrist has listened to every one of our concerns and seems to be willing to go back to ground zero where she was stable and functioning well! 

I am looking forward to see what will happen at that appointment and how it may change Laura's life for the better! I am breathing a huge sigh of relief tonight!!

What Life is Like on Psychotropic Medications: In Laura's Own Words

As Laura and I begin to document her journey, today I am posting something Laura has written in her own words about what life is like for her as she lives through the side effects of her psychotropic medications. ~ Dawn

What Life is Like on Psychotropic Medications

by Laura Irons

Drugs. Everything in my life seems to come down to drugs. The ones I hate, I have to take under threat of hospitalization. The ones I like, I have to abstain from for reasons like health/prison time.

I’ve come to find that my body and brain are mostly fueled by chemicals. The medications ruin my appetite, so I don’t eat much. The amphetamines and anti-depressants wake me up every morning. The anti-anxiety meds keep me calm throughout the day. The anti-psychotics, tranquilizers, sleeping pills and mood stabilizers put me to sleep every night.

It’s a scary feeling to go to sleep with that much medicine in your system. I’ll explain. The medicines’ effects kick in one by one. First, your mind slows down in a barely perceptible way. Your limbs feel heavy. Your body is sluggish. 

Next are the physical effects. You have to sit down because your limbs are rubbery. You don’t lie down because your mind is still buzzing from the amphetamines (most ADD meds are amphetamines). You’re too awake to fall asleep. Your mouth dries out and your body takes on more weight, but you try to fight it off. Half an hour passes.

Each movement feels like moving through water. Your muscles protest everything you try to do. It sucks if you’re hungry or in need of something. By this stage, you’re too uncoordinated to leave whatever spot you’re in right now. Your mouth is too dry to eat and your mind is starting to slow way down.

Next, the mood stabilizers kick in. These are only observable if you know the effects well enough. Your mind becomes foggy and you begin to space out. You forget if you needed anything. Even if you do, it’s not worth the effort.

By now the tranquilizers have taken full effect. All you can really do is lay there. I hope you’re comfortable with the room’s temperature and your body’s current state, because it’s too late to change anything. Your mind is probably racing to compensate for your body’s uselessness. Your mouth might as well be full of sand.

Next, the anti psychotics kick in. This is the part that shuts your mind down (but not all the way). Slowly, you lose the ability to talk in coherent sentences. Your thoughts become jumbled and your brain feels overworked and exhausted. Your eyes close involuntarily, but your brain still hasn’t shut down. It’s time to take the sleeping pills.

You lay there for a while. You don’t know how long. For me, it’s usually about an hour. You’re in a state of sleep paralysis while your mind is struggling to function through the chemicals. You’re fully aware of being involuntarily drugged. Your body is out of commission and your brain is on the fritz.

If you’re anything like me, your mind will now begin to torture you. First come the bad memories from your past (never the good ones). Next are the unanswerable questions (Why have I survived when those close to me have died? Why am I here? Do I have a purpose at all? When will I understand those around me? When will I understand myself? Will I ever feel alive? Will I be ready when life actually gets better?). 

After that comes the fun part. Your brain will become a sadistic machine torturing you with your own past, present, future, hopes, and fears. Anything you can think of will become warped. Your mind is responding to the paralysis in your body with a sort of panic. Your body is out of control, so your thoughts are filled with unconscious fears. You’re left paralyzed, drowning in the turbulent sea of your sick subconscious.

The last stage is the blackness. I call it this because there’s nothing else to it but blackness. You’re not conscious, but you’re not asleep. Your body is drugged into paralysis and your mind is drugged past coherent thoughts. A vague idea or concept may whisper through your headspace, but you can’t catch it. You don’t even try.

There’s not a concrete thought in your mind. You’re unable to move, even if you’re uncomfortable. You feel the weird sensation of weightlessness that comes with total muscle relaxation. You simultaneously feel like you’re sinking down, deep down, under water.

One by one, your senses turn off. Your eyes don’t register any light that may be outside your eyelids. Your body is numb to all sensation. Your ears process sound as if listening from under water. Your mouth is too dry to taste anything. All you can smell is your own breathing.

Your mind stays awake. Why? Hell if I know. But for a brief period of time after the medications take you out, your mind observes your body shutting down and remains conscious enough to experience the feeling of not experiencing any feelings. It’s why I call the final stage the blackness. You’re devoid of all feeling and sensation, sinking deeper into your bed with your eyes glued shut and your brain malfunctioning. It’s just you and the darkness now.

If you’re lucky, the sleeping pills will kick in before you start to wonder if this is what death feels like. Once you start wondering about that, you can’t stop, and you won’t sleep at all.