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Wierd Ideas part VI: Fear and Empathy

I remember the last thing I thought that night. I wanted her to know how I felt. I wanted to see my emotion on her face. 

That emotion was an intense fear, with some sorrow and anger. I wanted her to understand. I wanted her to be afraid too. I wasn't sure how to make her understand. In the end I decided I didn't want her to see.

cleanup on ward 2! Ashes is back!

Reflections

Your eyes looking back at me tell me everything you see

Your eyes tell me where I've been and the person I can't be

Your eyes tell me so much more then I could ever say

Your eyes come to me in dreams and then they run away.

My hopes float upon the wind like a gentle feather

They rise with every victory and sink with stormy weather

They fly so high when I am free of all my doubts and cares

They come to me to lift my goals with challenges and dares

My wisdom finds the meeting 'tween my goals and all my acts

My passions rising in the storm forever wane and wax

Until I find my soul's true counter forever will I roam

And if I never find her, I will find my way alone. 

Project #Next

I need to work on my drawing skills so that I can create consistent images of Sarah, Jess, and the others. Otherwise the AI makes them look different every time. And im wasting my life trying to be something I am not. I am a writer. Accounting is not very realistic. My health is too unstable. Accountec has done nothing but lose money. I've got to publish more writing. 

I know there are people in this world who do not want to believe in autism or to deal with it, but I have no choice. I have to face the truth that memorial medical and people in my life don't want to face: that I have autism, not bipolar, I have a trauma disorder resulting from years of medical mismanagement and misdiagnosis. I have been medicated out the wazzoo, and become a running joke because my body is like a science experiment.  And they'll believe anything but the truth, so help them God. So I take a few steps back. And I keep a safe distance from the bipolarizers and the doctors without boundaries. The God complexes. And I try to reduce expenses and adjust to my reality. The reality that the medication has caused me harm. A great deal of it.

My Greatest Hope and Prayer...

is to give the world my words and be at peace with those in it. The doctors have tried. I do need to step back. I need to do the slow and steady. I need to take care of myself and my home and stop ending up in hospitals. It's not helping. 

The End

     I think my biggest mistakes were not taking autism spectrum seriously, trusting Assmussen when I shouldn't have, believing that medication could do more then it actually does, going to McClean, and spending too much time in hospitals. In the aftermath of Prichards' abrupt resignation, I wish I would have been firmer and stronger. I wish I would have communicated better. 

    I regret allowing Leaves and Molly to shoulder blame. It was not their fault. It was a medication clusterfuck with some God complexes in charge. It got rather ugly. So I've withdrawn a little bit. Until I'm strong enough to face the remaining problems. I can't play musical centers/hospitals. Especially when they don't have a fucking clue and they are just pointing fingers. I'm too tired for the bullshit. 

    Given the carousel of medications that I've been on, the misdiagnoses, and all the stress and miscommunication, I have no doubt that it's true that some things are permanent. I think things cannot be undone, drugged away, or swept under the rug sufficiently. I can still walk and talk, I'll take that for a win. I'm tired of playing medication games. I think the only remaining step is to adjust the ADHD meds. Then I can work some and finish my writing. 

    They say I'm never going to have a normal life. It's not exactly a death sentence like cancer, but it can be if I'm not careful. Push too hard and you never know. I prefer not to give the doctors extra work at this point. I still apply to jobs, but with a hesitancy. And I just don't think it's realistic to retake the CPA. I'm not even sure I could pass the EA at this point. 

    The mind needs breathing room. I keep pushing it, who knows what might happen. I had micro seizures on mirapex. I had two comas. I don't think it's wise to push the mind too hard. It can break. I think it's too late. I think I need to focus on what I CAN do, not trying to push the envelope when we've already been down that road too many times. Pushing too hard is a surefire way to end up broken. It's not easy to work when you have autism, it's even harder when you've been through the med trains and the comas and the rest. They need to focus on pushing someone else... the young people who have the energy and capacity for that. 

    Some people cannot recognize true till someone is dead or dying. I think the people in my life should take a few breaths and think about how successful this has been so far. Maybe it's time to stop pushing, take what we can get? Before we hit coma #3? Just a thought. It's not actually the doctors that kill me, it's unrealistic expectations. It's not actually bipolar, it's pushing too hard and being unrealistic about my limitations. That's part of why I need to write. So that people understand the dangers of bad psychiatry. You misdiagnose, you ignore warning signs, you don't pay attention, then you end up with this. ANGER, dysregulation, attention problems, anxiety, spaceyness, depression, neuropathy, headaches, broken relationships, lies and accusations, and on and on from this center to that hospital to this other place over here until the health departments all say fuck it. Or I end up dead from medication gone wrong. It really makes no sense. 

    I need to slow down. I need to lower the expectations. Because this shit ain't kosher, and my doctors will quit, not because of THC or because I pester them too much, but because there's absolutely nothing, they can do to help me if I keep trying to do the impossible. That is the heart of the matter. Medicine has limits, especially with autism spectrum. 

    I've accomplished a lot for someone with my limitations. I need to call it quits while I still breathe. The mind can only take so much. At some point someone is going to have to have the common sense and the intelligence to say, this isn't fucking working. We need to stop. We need to step back. This is not safe. We need to take what we can get while we still can. Even CCBH said it. They said maybe there's some permanent difference that we can't see. Maybe all the meds fucked the brain. Even Prichards said it. Micro seizures. 

    We need to recognize that medication has limits. I'm still good at writing. Take what you can get. It was MIP that started the whole med train thing. ATLANTA SAID NO. No one was listening. By the time I was dumped on McClean it was too late. We had gone too far down the wrong roads, not learned a damn thing. I am a human guinea pig for brain drugs. That's what I am. All the combinations and permutations. Prichards wanted a case study. Well here it is. We done fucked up. Too many drugs, too many misfired careers, pushing too hard, expecting too much... getting nothing but a bunch of bitter and angry people, lots of accusations, and a lot of chaos. 

    This is why I have to step back. It's not worth the risk or the stress on the brain. Need to leave it be. I need to reduce expenses. Retire from professional patient hood. While I still can. I think there's only 3 people who haven't fully accepted this: two of siblings and my father. Maybe someday they'll understand. It's too late. Whatever capacity I may have had, it's not there. I will not have a normal life, I can still have a life, if I slow down, be smart, and go easy on the meds. There is no machine, no drug, no therapy for this. It's fucked. The best thing I can do is tighten my belt. Try, as Arson said, to enjoy life. He wasn't wrong. I know he saw all of this. But there's nothing he can do with unrealistic expectations. With therapy, I can still contribute. It may be hard to accept, but I think the medical community is starting to see it. It's too late. It's time to focus on the people they can help. That's what I want. For the medical personnel to focus on the ones that they can help. We can argue about the reasons, but I know we can all see, if we allow ourselves to, that it's too late for me.

    I think even my brother, who can't seem to see why this is a fool's errand, can see that the medical professionals are at their wits end. It's time to stop pushing. Before there's another medical error, or God forbid a stroke. I tried. I even let them cut me open. It's time to stop. I say that not only out of compassion for myself, but for my professionals. It's time to stop. I've been living beyond my means. I need to save money. This life has been a bit of a chaotic mess. But I got to meet a lot of cool people. I got to learn a lot. I got to travel. Now I need to slow down and stay slowed down. There are other people that need help, people with more capacity. There's no redo. I need to focus on finding people that understand. They don't hang out at mental institutions, addiction centers, or places like that. Otherwise, I need a monastery or a small, deserted island. I need some peace. 

Persons of Principal

YOU GUYZ! SPIDEY SAID NO DWINK BWEAK TILL YOU CLEAN UP DIS POND!

The positive parts of my life have mostly been with people in the real world. I think many of my concerns around medicine revolve around this idea of all the things medicine can do and the power of medicine. I feel that sometimes this conveys a lack of respect for the possible harm. When you have a system pumping humans through, maybe it's moving too fast? Maybe humans don't need so much fast paced microanalysis? I feel that I have more success in respecting people as they are then in trying to fix them. Maybe thats where the learning comes... in respecting differences rather then trying to hammer each one out. Cooperation is not a one way street. Finding one's way in a complex society requires two way communication, I think.

I'm finding some peace and centeredness in isolation. Perhaps it's coming time to stick my head out into the real world.

Kenzie

    Kenzie works in IMU. She didn't say much. She just laughed and laughed. I think laughter is great medicine. 

     I don't understand the world so well. I'm trying to encourage others. Here I am, going from hospital to hospital, Center to center, looking for some sort of insight in order to live some sort of life I've never had and at my age it does not make sense. I don't even like money that much. I see all this greed and the fast pace, and it makes no sense to me. I thought I wanted a faster life, but I don't see it. I don't see it realistically happening. If I'm getting threatened with insurance fraud and jail just for showing up for help, then something is wrong. Somewhere I'm missing the boat, all labels aside. I'm looking towards eastern medicine and trying to go maybe 1/3 the pace of the next person because it's better to go 1/3 as fast and take fewer detours then to go just as fast and go everywhere but where I need to go. At least going 1/3 as fast, I might eventually get somewhere. 

    So, I'm redoubling my effort to cut every expense that I can possibly cut. I'm isolating to the max. I'm focusing every available moment on staying the course: Keeping on medication, getting enough sleep, eating right, exercising, and making the moments that I have with others effective. I've wasted enough time. I've seen enough of the world. I've met plenty of people. I need to focus. I don't have time for keeping up with whatever joneses or popular culture or whatever else is not an essential part of my life. I'm sure they'll still argue about what the hell my problem was after I'm dead. Regardless, I need to do something useful. Meaningful. With someone that wants to do something meaningful with me. Someone who believes as I do. Who understands this mess of Whateverisms that my life is. For richer or poorer, till death do I come apart. 

    I want to write because I don't feel like I am able to relate to people in the real world the way I need to. I want to write because the world doesn't make sense to me. I want to write because I'm told I'm good at it. 

Truth

     So, my truth, that MIP and a lot of people have trouble understanding, is that I'm not actually a drug addict, I've been overmedicalized, I have autism, I don't believe that Bipolar is accurate, but it shows up from time to time, I've developed special nutritional requirements as evidenced by my GI problems, I get angry sometimes but I'm not stupid, I communicate better in writing, and I actually like people. I'm not rich, I'm poor. I'm disabled. I sometimes lose touch with reality. 

    I'm going to try to give the world my best, which is my written words. I'm going to try to make them really great words. I want my story to be... not a tragedy. The way it's been going, it's been writing like one for so long. I need to have patience and focus. I've lost interest in climbing ladders. I'm struggling to find the energy to care. I don't understand people that well. I think humility is important. I'm trying to find peace on the outside. I do worry about my health because it seems to have been poorly understood. 

Collecting

    I believe I've collected enough labels, enough aborted careers, enough hospitals and centers. I need stability. That's what I need. I need space and independence. I need to slow down and decrease the sensory input. I need centering. I do not need to speed up. Most definitely not. I do not need to keep jamming square pegs through round holes. I'm entirely too complicated. I need to simplify. The solution is not to go back to MIP or Springbrook or CCBH or find an entirely new place to fail at. The solution is to be grateful for the time and effort put in by so many. I am grateful for what MIP has done I am grateful for the time and effort put in by so many health care workers to help me move forward. I find bipolar to be unhelpful diagnosis. Regardless, I take the medication for the symptoms I do have.

Focus on the Positive

     I need to focus on what's right with me, not all of the things people perceive to be wrong, otherwise it's a never-ending litany of accusations and counteraccusations. So, for now, people get my words, until I understand better how to give them what they want. I'm so sick of the carousel of blame. 

    It's time to breathe, separate, wish well, and find my own way. Otherwise, I might as well write myself an invitation to prison and reserve a cell. Maybe one next to that guy that sent the documents. We can have a good old chat.

    Sometimes people are just bad in combination. Sometimes they need time away. I'll stay squeaky clean, so that no one finds excuses to interfere in my life. 

Medicaid

    It's frustrating for me that Congress decided to cut Medicaid. MIP is a Medicaid facility. I've seen these hospitals. They need the money. They need it. I think if we don't do it for the patients we should do it for the hospitals that need the money. I may not be the one people want to listen to on this but I've seen the problem extensively. Me, myself, I need to stay out. I've been in them too much. But there are people that depend on quality healthcare. I think they should get it. I think I should stay to myself until I manage to be productive without people threatening with jail and stuff and creating bullshit rumors about drug addiction and my counselor that I should have shut down a very long time ago. 

    Some young people, they don't have the sense to understand what years of problems can do to a person because they aren't old enough and haven't been through enough. But I know. Cuz I've been to hospital after hospital, and I've gotten a list of my chart so long that I just want to be left alone until I stop around and around in my head about which problem came from where and whose fault it is. 

    I don't want to blame the health care workers. They work long shifts. 12 hours oftentimes. Sometimes even more. But I'm tired of all the back and forth. And I think so are they. 

Using words

     I want to contribute when I'm thinking clearly, and my mind is crisp. Otherwise, there's mistakes, and particularly in certain fields mistakes have consequences. It's not to say that I'll never be productive, but I can't be productive and screw up. It's not how you do good work and keep working. I'm good with words they say, I should use them. 

    There was someone that wanted me to use my words for him. I was not able to. He was a convicted murderer being beaten by prison guards and denied effective medical care. So many visits to the infirmary. He sent me some documents and then the Department of Corrections contacted me, told me to stay out of it. I met him through a woman on a dating site. I wasn't really feeling in a position to take on the Dept of Corrections. I looked at the documents. There were definitely a lot of infirmary visits. I wasn't exactly planning on being an investigative reporter. Maybe I intimidate easily. But then again he stood up in a court of law and admitted he murdered someone. Not exactly the first person I would help. Not against the department of corrections. 

Nutrition in Hospitals

    Getting Proper nutrition in a Hospital can be difficult. They don't always have the best options. I liked that SpringBrook made such an effort to separate the vegetarian option from the regular options and was diligent about advertising and providing those options. I liked that MIP had such advanced nutrition education. I've developed GERD, hyperglycemia and idiopathic constipation, so I think it's important to pay attention to diet. 

    Personally, Brown rice is one of my favorites. I also consume a lot of whole grain bread. I've gotten better with the veggies. I'm doing the Kale smoothies with the Chia seeds. I don't honestly get that bored with a consistent diet. I like consistency. Too many choices create risk, and my dx list is becoming a mile long. 

    I have been frustrated. But the shut up and learn from those who do better hasn't been working. So I'm being more selective. I've been a little slow to decrease expenses. But so many people making suggestions, I've had to isolate AND reduce expenses and it's beginning to look a lot like Hobo around here. 

    I need to focus on keeping my cat and my environment clean. I definitely over relied on medication. It's frightening what can become of a person lost in a system. Given my low energy and focus and all of the pent up and unspent emotions from all these years dealing with mental illness that simply has not been managed well enough, I'm going to have to hyper focus on what I need. So that I can contribute to society. It feels like chaos. This job to that job to this hospital to that center. it doesn't make sense.

    The poor cat got sick. We're keeping our spirits up. 

Orientation

    I'm trying to orient to my new reality. The one in which MIP thinks I'm a drug addict and we keep moving dx's around. I mean, they're just labels. But I'm finding that this whole remote thing is working better for me. I show up only when absolutely necessary, and they don't have to fuss and freak so much. I just do the check in's, I look for work, I do the healthy eating at home (much more possible), I do the meds by myself so long as walgreens manages to not **** up... everything is groovy. I ignore symptoms I can't make sense of, like weird headaches, body sensations, that thing with my left shoulder that the internist couldn't figure out with the bumps... I reduce expenses, I go lean... I try to exercise and get more sleep, take very careful care of my sinuses. I stay positive. 

    It's my new reality. Broke, stuck with disability, not likely to hold a job at the rate I'm going, but still trying. Trying to get adsense with the program. Trying to keep my meds filled, waiting for those tax refunds... keeping positive and running my life on a shoestring budget, hoping the price of groceries doesn't go up, letting the cat keep an eye on me. 

    Walgreens needs to update their systems. Some of the communications are patently false. Which is part of how I ended up in the ER begging for a prescription. I'm stuck with the meds. I have to take them. The labels have been independently confirmed multiple times, so unless you guys have a new idea, maybe we stop trying to force a round Bipolar on a square DID? Just sayin'...

    It was really interesting meeting that patient observer. She was really nice. Told me this story. She broke up with her boyfriend, he shot the kids and grazed her with a bullet before lying them side by side and shooting himself. She survived. Ain't that F*ed. Some story. She started in the kitchen but they decided she was too valuable and had her start working with patients. Name started with an O. She looked maybe a few years older then me. First she said she wasn't married, then she's married but they are rather independent, do their own things but together. Sounds like they have their personal space worked out. It took me a while to start to talk to her. Nurse graduated Clemson. Barely spoke but she was nice. 

    I didn't know what to expect from Dr. Darcy this time. She was quiet. It was the most routine ER visit I've ever had. There seemed to be one man in pain. I didn't want to rock the boat so I kept to myself. 

    Reminded me of the time I showed up to the ER asking if I was manic. Dr. W. Said no, you're not manic you're depressed. A patient tried to come in my room and I practically flew to the opposite wall. 

A Liddle Higher

 Spidey is a good Spider... instead of getting angwy, he gets a liddle higher...

 

See me?

     Allright. Starting fresh again. Yet again. I feel like the decrease in sinus symptoms has allowed me to use the CPAP machine more, which helps my sleep and therefore my energy and just about everything else. I think the problems with my sinuses have been key and overlooked, but the shot and the debrox seemed to help. The change in diet and the isolation seemed to help. I need to hyperfocus on maintaining diet, exercise, CPAP, and meds, otherwise I'm no good to anyone. 

    This experience has been extremely humbling and distressing. I've felt somewhere between the metamorphosis and the invisible man. I only hope I can maintain my health, because I want to contribute. I need cleanliness, patience, discipline.

    I've tried to be honest on this website about mental health. It's taken a few detours and it's not always been pretty, or anywhere close to it. I miss feeling like I had a crew. Having an independent voice is isolating. I have not enjoyed the experience. Trying to inspire others in a world of differing views is a strange business. 

    I feel disingenuous if I'm always positive and full of hope. I try to be honest, and that doesn't always allow for painting in the brightest colors. What's most disturbing to me has been the shifting of loyalties as I've said more and more. All I'm saying is what has happened. It's gotten so extremely personal. It makes me wonder how you can be personal with someone and still be their friend. 

    I like to lift others up, even by admitting fault. I don't want to be the perfect one. It's not realistic. I'm definitely not perfect, I'm not actually well liked.

    What I learn about people sews doubt. It's easier to be closed, play it tough. So much easier. To say nothing at all. I've tried to hold back. I've tried to be nice. When you say all the right things, you play along, life goes right smooth. Where is that middle ground between too open and too closed?

    When I started the website, I thought maybe I would still be able to relate, while telling the truth. I feel like I was living a false life, just playing along. Living in a fantasy. All the volatility and the isolation, is it coming full circle? They keep asking me about paranoia. As if wanting to have a voice in your own health care is paranoia. And low and behold, my physical health has gotten better with me having that voice. But I don't like the pushback. I feel a chilling effect when truth comes out. 

    I do feel betrayed. And the world is going to have to let me feel betrayed. They should have asked me why. They should have given me a chance to explain my actions. Now I'm paranoid because they don't want to hear. I don't think it's paranoia to be afraid when people threaten you with jails and restraining orders for showing up to a hospital with a bad reaction to Spravato. I don't think that's paranoia. I think it's a very realistic fear. 

    What I would have understood is if in March they had a talk with me about maybe spravato is too risky for you. That would have made sense. And I had some poor judgement around Elle with the contact and the mentioning her name. It's funny how when I used to just play cards and go to the classes and take the drugs everything was fine and dandy. I try to have a say in my own healthcare, and I make one mistake with a nurse and the tables turn. I was following Prichards and the doctors' medical advice the whole time. That never changed.

    I need to find my humor and hold onto it. I need to do this because I am grateful for the care of the workers that put in long hours and demonstrated compassion. I need to be my own light in the world and communicate better. I hope that I can do that. Hopefully, my writing and my work in accounting can do more for the world then my actual presence has seemed to do.

Life can get dark. But it doesn't always have to be that way. Sometimes people move on. It doesn't mean they didn't care. It just means they can't be there anymore. Sometimes caring gets out of hand. People can be addictive like that. There's an addiction I can understand.