The big bad monster on the couch

I know that it is not easy to read or talk about mental illness. I understand how it makes you feel all squirmy and uncomfortable inside and anything you say seems wrong. You sometimes even become afraid of the person before they do anything at all. I know this because that was me seven years ago. But now this is me - the same me but with a new vision and comprehension. This journey has changed me in so many ways and will continue to do so for quite a while. I have found many of the flaws, or disastrous potholes, in the current mental health system and I have coped with those who work with us but have no respect for us. Yet I can also say that I have been blessed by this experience, because I can now relate to those who are struggling. I can truly mean it when I say I understand. And I can use my little voice from nowhere to shout as loudly as I can the truth about mental illness. If I can stir one blade of grass then it will have been worth the journey.

After leaving the first mental health facility, I immediately had to stop taking two of my important medications due to Medicare refusing to pay for them. I have a whole speech on the government deciding what medication you can take instead of doctors but I will leave that for another day. Anyway, the loss of these two medicines caused me to fall. So I went to the local hospital that has a mental health floor. That was a disaster I will write about all on its own, but they changed every medication that we had worked 30 days to get balanced and then sent me home. I started a partial inpatient program at a private psychiatric hospital about 45 minutes away (the provide transportation which is how I can attend) but after starting on Friday and attending on Monday I ended up back in the emergency room with severe symptoms. This time I knew to ask for help even as I was trying to reach for the pill bottles. The local hospital wanted another turn with me since I was a resident of the county and they had a bed available but I refused to go to that unit. It took a court mandate, and the declaration of the manager of the unit for me to be able to return to the original hospital. I just got out after spending 9 days there starting all new medications. I was feeling so good yesterday about coming home, until just before the van came and I realized that my social worker had not followed through on providing my medications and I had prescriptions but no money to fill them. I ended up in tears of total anger (I hate that I cry when I am mad, it just makes me madder) and even admittedly crossed the line with my language. So I am home with no new meds, trying to wing it with the ones I received from the other two programs and praying that it is a good sign that she had them filled somewhere and will find a way for me to get them. I am so happy to be home, and will be restarting the partial inpatient program on Thursday since Monday is a holiday and I have to get a ride there on the first day.
 I am so ready for this to just stabilize and to return to my normal life. My greatest fear in life has always been to lose control of my own mind, and this does that to me. It robs me of  my total control and it makes me feel weak when I know I am strong. It tells me that I am not worthy of love when I know that loving is one of the things I do best. It steals from me the joy of a good day out of fear of how long it will last even though I know that life is in this moment. I want to just go back to being me again - well, me with the new insight and changes.
This, this is mental illness broken down to black on white, to a single story, to a timeline of a life, to a solitary experience. This is me - a daughter, a friend, a sister, an aunt, a teacher (well, former), a writer, a photographer, a dreamer, a world changer, a survivor, and an individual with mental illness.

Whatcha calling me?

I had already had a tentative diagnosis of bipolar disorder when I went to the psychiatric hospital based on a certain abnormal gene found associated with my mitochondrial disease. That I understood, Then the symptoms of psychosis were added in and I was like, whoa, are you calling me psychotic? The anxiety disorder I think came from being in the darn hospital. But I would like to explain my official diagnoses for those who do not know.

Bipolar disorders are marked by episodes of mania and depression, which may alternate although  most patients have a predominance of one over the other. Bipolar disorders usually start in the teens, twenties, and thirties. The lifetime rate of Bipolar disorder is 4% of the population with both genders represented equally.

There are three types of Bipolar Disorder:

Bipolar I: The presence of one severe manic state and including usually depressive episodes
Bipolar II: The presence of major depressive episodes with one or more hypomanic episode (not complete manic)
Unspecified Bipolar Disorder: Disorders that clearly match features of Bipolar Disorder but not completely enough for diagnosis

Psychosis usually happens during the manic phase and can easily mimic schizophrenia

Treatment of Bipolar Disorder usually uses mood stabilizers and 2nd generation antipsychotics. Treatment generally has three phases
            Acute: To stabilize the new symptoms
            Continuation: To achieve remission
            Maintenance: To keep the patient in remission

I fall under Bipolar I (oh the stories I could tell about a manic episode) with symptoms of psychosis because I was hearing voices (Damn Molly). The anxiety disorder I cannot really specify on because there are tons of disorders that come under that heading. My treatment for my Bipolar is both medication and therapy.

Yet if we met you would never know there was anything different about my brain than yours.I have learned to cover it well and unless really manic or really depressed can act normally.

Just the Facts

Before I continued I wanted to post some facts on mental illness that I found online to help support education and acceptance.

* MYTH: Mental Health does not affect me
    FACTS (from 2014): 1 in 5 adults experience a mental health illness in their lifetime
                   1 in 10 young people experienced a period of major depression
                   1 in 25 Americans live with a serious mental illness
                   Suicide is the tenth most common cause of death.

MYTH: Children do not experience mental health issues.
  FACTS: Even very young children can show early warning signs of mental illness
                Half of all mental illnesses show first signs before the age of 14
                Three Quarters of mental disorders begin before age 24

MYTH: People with Mental Health problems are violent and unpredictable
FACTS: Only 3-5% of violent crimes can be linked to someone with a serious mental illness
               People with serious mental health issues are 10x more likely to be a victim of violent crime                      than thee common population

MYTH: People with mental health illnesses, even whe receiving proper treatment, cannot handle the stress of a job.
FACTS: Employers who hire people with mental health issues report good punctuality, attendance, motivation, good work, and job tenure equal to or greater than their neurotypical peers
.
MYTH: Personality weakness or personality flaws cause mental illness. A person with a mental illness can just snap out of it if they try.
FACTS: Many factors contribute to mental health including
                       Biological factors (genes, injuries, illness, etc)
                       Life Experience (Like a history of trauma or abuse)
                      Family history of mental health problems
              People with mental health issues can get better and even recover completely 

MYTH: There is no hope for people with mental health issues and they will never recover
FACTS: Studies show that people with mental health issues get better and many recover.

MYTH: Therapy and self help are a waste of time. Just take medicine.
FACTS: The individual treatment plan for someone with a mental health illness may include medication, therapy or both.

MYTH: I can't do something for a person with a mental health need.
FACTS: Only 44% of adults and 20% of youth with diagnosable mental heath issues receive the treatment they need. In this case, a good support system can be vital.

MYTH: Prevention does not help. It is impossible to prevent a mental illness.
FACTS: By promoting the social-emotional well being of youth outcomes include
                             Higher overall productivity
                             Better educational outcomes
                             Lower crime rate
                             Improved quality of life

US Department of Health and Human Services, Mental Health.gov 

Miss Molly Mack

I told no one that I had been hearing a voice other than my own in my head since before my first suicide attempt. I thought they would think I am crazy, which is rather ironic, The voice continually told me I was unworthy, unloved, unimportant and that life would be better for everyone if I just killed myself. It was like listening to a CD on repeat 24/7. At the hospital after the second attempt I confessed to the doctor about the voice (Once I knew I could trust him). He said it would take a combination of medications and work on my part to get rid of the voice. Positive thinking, meditation, writing, etc. were all encouraged. I decided that since I argued with this voice often enough it needed a name. I went with Molly because it seemed to be a less harsh name. It turns out that the name Molly means bitter. Very appropriate! The best news of all is that Molly has been put on mute!!

Mars, Venus, Where the Hell am I

When I arrived at the psychiatric hospital I first they had taken me to a jail instead. It certainly looked like one. inside was a completely empty room to wait in. The paramedics stayed with me at this point. I was wanded for metal and then moved to a room with a few traditional medical items. It was at this point that I signed myself in. Signing your self in means you can request a discharge and the doctors will reach a solution. If they feel you need to stay they will get a court mandate. If you have a mandate you cannot refuse any treatment proposed by the doctor. Since I like to have the right to Say 'no!" like a two year old I chose to be voluntary. I was sent up to the fourth floor, what I so lovingly call Dante's Inferno. I was strip searched and given hospital 'clothing" to put on (mesh underwear, disposable blue pants and two gowns (one served as a gown, the other a robe). I did not have either of my wheelchairs with me so I had to use what looked like a 1970s ghetto wheelchair. Add in the yellow no slip socks and i was hot. :)
There are four floors to the building i was in. the forth floor held  the crisis unit (think of running around yelling i can fly tinkerbelle!) an the fourth floor unit. It was very convenient as patients bounced in and out of the crisis unit. These were the adults that could not stop responding to the voiced they heard, who tended to be aggressive, and as a whole seemed unmotivated to change. In line for breakfast there was a patient enraged  He started throwing chair and somehow just missed me.
Knowing there were people with homicidal ideation and even plans was enough to keep me awake all night. i was rescued by my psychiatrist said that was the wrong placement for me. As soon as a bed was available I would transfer down to the first floor. That unit was calm, friendly, and real. There were few instances of arguments.
Now before I make this sound too good here, we hqd MHAs who checked on us (yes, some even in the shower), a routine that  stqrted with groups ,we were awoken qt 7;45 and all made a mad scramble for the coffee. crappy decaf but it was coffee. I cannot wait to try the new  biggby by our house thqt was built this winter while I was done.
I was quiet, observing, and trying to figure out the people around me. To my psychiatrist I was withdrawing, isolating, and socially inappropriate. SIR, my normal may look a lot different than your normal but that is not a  psychological problem. . the major depression qnd fun little voice  screaming at me in my heqd provided plenty of entertainment.

Simon says

I always knew that this would be a journal of the different perspectives of life that I experience. It is my view of the world through experiences others may never have. My perspective on something major has changed and I will be sharing about this journey for a while, but let me start at the beginning.
I ignored the warning signs that I was depressed. I justified them. I ignored them. Obviously this is not the best response to take. At the time I was overwhelmed with the many health issues in my life and the fear that it will just continue to decline. We were also facing eviction from our apartment and had searched literally every resource we could. I began to think that Mom's life would be easier without me, that no one would notice or care, and that I could escape the pain. There was a voice in my head telling me I needed to die, that I was worthless, that no one loved me. So impulsively one night I took a bottle of coumadin, a blood thinner used in rat poisons. I then panicked and told Mom what I had done. I stayed in the hospital as a medical patient for 5 days but received no psychological treatment because they felt it was a one time illness. When I got home I began to research which of my medications would be more effective yet not painful. The same voice was almost constantly present telling me how worthless I was and how suicide was the only answer. Almost 2 weeks later to the day I attempted suicide again by taking a bottle of my cardiac medicine. I tried to hide it from Mom but one thing I cannot do is lie to her. I ended up spending all night in the emergency room as they monitored my blood pressure and heart rate. A whole bottle and neither level ever moved. God protected me for some reason. That afternoon they finally found an open bed in a psychiatric hospital, as the need is greater than the supply, and I was transferred to Detroit. I ended up spending a month there in treatment, mostly adjusting medications as we had to go slowly and carefully with my medical issues. I was diagnosed as Bipolar I with psychosis and Anxiety Disorder. I am now on 8 different medications to control everything.
This has been my worst nightmare. I could always handle whatever my body did but to have it interfere with my brain was something I could not imagine. I feel like my brain is floating in chemicals making it harder to think clearly and communicate what I want to say.
I will be writing more about my experiences from the other patients (Names changed for privacy) to medical staff to what I have learned. All I ask is that you please do not judge me as my diagnosis. I am still the same person I was before this happened and I am the same now, a little quieter but also a little wiser.

Homecoming

Today I was once again released from the rehab facility. I am so relieved to be free from all of the confines and limitations and difficult conditions. I celebrate my freedom and my overcoming and my accomplishments. I still have a ways to go, but I have gone so much further than I imagined possible. I use adapted tools for now (special dishes and silverware and pens) but will get back to using normal items. I still cannot do buttons or zippers or snaps or tie things but that will come with time. Thank God for pull on pants and super cute Sketchers tie-less shoes. I am able to do so much more than I could at the end of January and it is a blessing to be home. It feels weird to not be confined to such a small space, to be able to get a drink when I am thirsty, to have a choice over what I eat, to not share a bathroom with four strangers, to not have to wait until it is convenient for someone to give me my medicine. It would be better if my mother were not in the hospital right now recovering from a stroke and a serious infection. I am still lonely and still missing someone to talk to and be with.
Yet for so many at that place there will be no homecoming, no new freedoms, no return to family, no return to a "normal" life. That existence is all that they will know from now on and that breaks my heart. In so many ways it is so wrong. It is so neglectful, so undignified, so restrictive, so demeaning, so limited. People become diagnoses become problems. Many workers are there because they care and want to be there, but many are there because it is a job and it pays and they were hired. They do not have any investment in the job, any compassion, any dedication. It is a paycheck. The system is broken and after 3 months living it I can say how it is broken but not clearly how it needs to be fixed. There are so many things to fix and from so many directions - policy, hiring, staff behavior, staff ratio, facilities, etc.
Most of all tonight I am giving thanks for my return home and prayers for those that I left behind.

Family Means No One Gets Left Behind

I have joined up with the work of Reece's Rainbow to support children with special needs awaiting adoption in countries where being born with a disability is a huge disadvantage from the beginning. I want to introduce the three special children that I will be praying for and advocating for. Their photos are on the right side of the page and by clicking on their photos you can go to their bios and donation pages on the Reece's Rainbow site.

Shannon is six years old and lives in an orphanage in China. She has Down Syndrome, two mild un-repaired heart defects, and is a hepatitis B carrier. Her older information states that Shannon is an outgoing girl who loves to talk. She may only be able to say simple words but she can be the life of the party. She has Down Syndrome and has been diagnosed with two mild heart defects (an ASD and a VSD). She is also a Hep B carrier. Shannon's caregivers say that she just loves life like the rest of the children in the orphanage. She loves to eat play and watch cartoons. Shannon is always playing and smiling.

UPDATE

Rule number one: Never leave scissors out where Shannon can get to them. She currently has little to no bangs due to an attempt to create her own hairstyle. However, even a bad haircut cannot take away from Shannon;s sweet spirit and lovable personality. She is currently 6 years old and waiting very patiently for her mama and papa. Shannon came to the orphanage at about 7 months of age already able to sit and crawl. She has good motor skills but needs help with her speech. Her receptive speech is good and she can follow directions. Shannon can use three word sentences. Shannon is a sweet and huggable girl who is very curious. She loves to play with her friends and thrives in a noisy environment. Shannon is ready to be part of a loving family willing to help her reach her full potential. For interested families, video is available.

Yulia is a four year old girl with hydrocephalus and a club foot living in an orphanage in China. She was born with hydrocephalus and abandoned at the local train station at the age of 5 months. At 9 months old she had surgery to treat her hydrocephalus and has a small scar on her scalp. She also had surgery for an intestinal blockage and has a scar on her stomach. She has good bowel and bladder control. Yulia had a left foot that is clubbed but is able to walk with someone holding her hand. She can use chopsticks, draw lines and circles, and speaks short sentences. She is reported to have normal intellectual development. She is a talkative and active little girl who gets along well with other children and likes to play outside. She desperately needs funds in her adoption fund to help a family cover the costs of her adoption.

Olivia is currently in the process of being adopted by the Graves family in Maryland. They were drawn to the Reece's Rainbow site by another child who was adopted by another family and then through prayer felt led to adopt Olivia. They are currently in the home study process of the adoption procedure. They have three biological children and are calling their adoption journey From Odd to Even. They desperately need to raise funds to cover the costs of adopting Olivia and have stepped out in faith knowing she needs a family and that they have room in their family just for her.

Just Breathe

I will never again take for granted the gift that is breathing. For a while I have been having issues with difficulty breathing due to the mitochondrial disease but nothing like this. Whatever infection hit me hit me hard and set up a chain reaction of lupus inflammation and mitochondrial weakness in my lungs. I am getting by on breathing treatments every 4 hours around the clock (yes you can fall asleep giving yourself a breathing treatment sitting on the side of the bed) and the maximum dosage of cough syrup every 4 hours around the clock plus now steroids. I have had pneumonia, I have had walking pneumonia, I have had bronchitis and never have I had to work this hard to breathe. I am thankful that in the end this will taper down to a new normal for me. That it will ease off once the inflammation settles and the muscles come back on board as much as they are willing. I will probably do breathing treatments forever now, but I am blessed. I can breathe without oxygen (I cut that border line close a few times but I made it), I can receive the treatment I need, I am improving ever so slowly and I know that after this breath there will be another one. I am blessed. For now I am blessed to just breathe.

When the Caregiver Gets Sick

Yes, I am medically disabled. Yes, I deal with a lot of medical issues and use a wheelchair and am unable to work. But in many fundamental ways I am the caregiver for my mother. She has demylination of her brain and has a very limited functional memory. If she leaves the room looking for something odds are she will not remember by the time she gets to the next room what she is looking for. She loses things all the time. We have three sets of house keys so far. She mixes up medications. She does not remember to take medications. She does not remember to eat, or if she has eaten, or what she has eaten. She does not always know if it is daytime or night time. I am her memory for her. I take care of the bills and the paperwork, the items that place a demand on her brain that she cannot handle. I take care of the daily schedule and make sure meals are prepared and eaten on time. I set up her pills into daily pill containers and remind her at the right time to take her pills. I help her to remember and be calm and not feel afraid. Her body may be stronger in some ways, but my mind is stronger and so we work together,.
So what happens when the caregiver gets sick and there is no family to call in to pick up the slack? No family that cares enough to be involved and see the full picture and be willing to commit. No friends that can offer the help needed. Things start to fall through the cracks. When the caregiver is sick and out of the house, a telephone call can only do so much. Meals on Wheels provides one hot reliable meal per day. The others are a toss up. Medication administration that is so well planned when the caregiver is home falls apart. We finally had to set up for a home health care nurse to set up my mother's pills in the pill boxes for her each week while I am gone. But who is there to remind her to take them? I try to call each time a dose is due and remind her but I am not consistently available. Paperwork stacks up as it overwhelms her and is beyond her capabilities, for me to deal with when  I get home. Bank accounts get messed up without supervision. Her health, her quality of life suffers when the caregiver gets sick. And there is no back up plan for this in our society. There is no one to call to step in when the caregiver has to temporarily step out. I could not have planned ahead for this or found a respite placement for her, as it was an emergency situation. And yet the caregiver is responsible.

Kung Fu Fighting

I have been rocking it in therapy lately and have a lot of new accomplishments to share. I figured I would do this in a list form rather than writing out a sentence for each one.
* I can walk sideways while holding on to a bar
* I can walk backwards while holding on to a bar
* I can walk up and down a set of five stairs of different heights
* I can walk stepping over cones (with right leg on one lap, left leg on the other)
* I can then pick up the cones from the ground
* I can eat (very messily) with my right hand with adapted utensils
* I can write (messily) with my right hand with a fat pen
* I can dress myself and pull up my own pants (Hey that is harder than it seems!)
* I am now allowed to transfer in and out of bed and to go to the bathroom independently
* I can manipulate objects like dice and clothes pins
* I can catch a ball

Now for the areas where I still need work.
* I need to work on feeding myself and writing
* I need to work on balance
* I need to strengthen my right leg when bending as it reaches a point and then gives out
* I need to build endurance and strength in all areas
* I need to work on general household tasks
* I need to walk longer distances with a normal gait pattern without cuing
* I need to work on my toes not turning inward when I walk

The BEST news is that I get to go home next Friday (February 26)!!!! I will receive therapy at home and continue to improve but I get to bust out of here in 8 days (not that I am counting)!!

You Put Your Right Side In

I feel like I am playing a perverse game of the Hokey Pokey. First I had to put my left leg in, and my left arm in. Now I am putting my right arm in and my right leg in. Hopefully sometime soon I will turn myself about. Is that what it's all about?
Today in therapy I was able to move my right foot all by myself. This is the first time since the hemiplegic migraine that I was able to  move it forward without assistance and clear the floor (ever so slightly but I cleared the floor). Yesterday the therapist had my foot on top of hers to take steps and pushed my foot along with hers. Today I was able to lift it just off of the ground enough to move it forward. I am also working on getting my foot to move, both opposite of my left foot and together with my left foot. Any movement is good. I purchased a very cheap Kindle Fire online and am using it as motivation to use my right hand even just to slide across the screen with a finger or touch with an isolated finger, things I need to work on right now. As I progress I can download games that require more finger and hand usage.
My perspective for today is that while I may be physically falling apart, I am blessed to have my mental abilities. There is an elderly gentleman parked in his wheelchair in the hallway outside my door where he can be watched for his own safety. He made it from his bed to outside in under a minute and it is freezing cold out today. Thankfully there are alarms on all of the doors. He is considered combative and right now is sitting in his wheelchair having removed his gown and trying to disassemble his oxygen machine. He will be having someone sitting one on one with him for the night to help keep him safe. This is very uncommon in a place like this for them to allocate staff for a one on one situation and probably will not happen again. That is why he is out in the hall, so he can be watched by current staff. He desperately needs individual attention, a dedicated aide, and a safer place to be where he cannot easily get from his room outside. Yet this is the best that his family can do for him right now and that makes my heart hurt for him. Carrying the gene for early onset Alzheimers disease it terrifies me to see how those with dementia are warehoused and treated in our country. We need better options, we need better services, we need better places and people and ways to treat those in need. We can do better and we must do better.

The Circle of Life

So much has happened since I last wrote here that I will try to condense information as much as possible. On December 27 I had a second hemiplegic migraine that impacted my left side. It mimicked a stroke again, and it took two and a half hours for the rehab facility/nursing home to contact emergency personnel. I thank the Lord that I was not having a stroke. This set me back significantly and I ended up being gone from December 4 (in the hospital until December 7 when transferred to rehab facility) until January 22 when I was discharged. That was 42 days in rehab. I was doing so much better. I had started to receive some therapy at home but was doing well. It was so nice to be home. Mom had left the Christmas decorations up for me because I missed Christmas. We went out to dinner to celebrate me being home.
That brings us to now. On Saturday I had another hemiplegic migraine, this time impacting my right side. I was home EIGHT days. Eight days. I am having a hard time coping with this happening a third time in less than two months and throwing my life out of sorts all over again. It is physically exhausting, and it is mentally exhausting, and it is emotionally exhausting. I feel so alone at times. I will once again be going to rehab. I was supposed to go to a rehab facility much closer to home than last time, but they do not have any beds. So as of right now I am going back to where I was last time, with the promise that I will be transferred as soon as a bed is available. This time is harder because I know what to expect, and because my right side is my dominant side, and because I was already gone so long before with just a short break at home. I am trying to be thankful that I had time at home, something many of the residents do not have as they live there day in and day out. I am trying to be thankful that it was not a full stroke causing brain damage. I am trying to be thankful that I have access to medical care that I need. I am trying.