I've really had some doubts about my families. I was in the hospital by age 13. 13. Now I have DID. According to standardized testing. Which only occurs in situations of abuse before the age of ten. Then im thinking about all the drugs they put me on and the lack of independence. Then im looking at Münchhausens by proxy. And it says the person in charge of the care of the person with by proxy is often a health care provider. I have two doctors in my family. You do see where im going with this? If im right, that would make sense because I was told my parents are harmful to me. It's just, you know, I've tried to help them. They don't listen. I've got to think on this some more. I just hope there are eyes on me. In case anyone tries to threaten or pressure. It's hard to stay level like this.
A small town... a white building built like an inn... People would come in and line up in the room to the right with the others, thinking they were checking in to a hotel and not the hospital where James Taylor recovered from heroine addiction. Opposite that room, the one room with AC, where everyone would pile in on the 100 degree summer days, making the room itself hot. Past there, past the nurses station and the stairs going up, you could get to the back door opening on a lawn with chairs where we played whiffle ball. Or go downstairs to a cave like basement with a big screen and vending.
Facing that main building, to the left was level 2, apartments. Somewhere, I think in lennox, was another building of apartments.
I remember Marge and Susie. I remember the bank. Walking down the street, the bank was across from the recreation therapy building.
Unusual experiences can instill unusual habits. I have a bed but I sleep on the couch. Im trying to get comfortable sleeping in my room. I have trouble organizing, and stuff ends up in odd places. When adrenaline rises, I dart and then almost collapse. I don't like to stand long for fear of fainting. I have trouble prioritizing. Memories come suddenly. I dissociate (space out) frequently. My face tingles. Tinnitus. But overall, much improvement since march.
Anxiety is an emotion that tells us when something in our life seems out of place or improper.
What does it tell us?
Anxiety tells us to exercise caution, to think before acting.
How to deal with it?
Visualizations are fantastic for anxiety. Deep breathing. Ice. talking to someone. Counting down from 100 by 7s. A good joke. Singing. Moving your body (dance). Yoga. running.
Body sensations
Tightness, faintness, blurred vision, sweating, butterflies, heart racing, restlessness, energy
Examples?
Making a speech, driving in a busy area, telling someone bad news.
I'm drawing on the knowledge and the faith I have collected from so many people. You were there from 97-20. They can make it about your hair color or your physical attributes, but you were my RN. You watched over me, you taught me, you never failed me. You know me.
I need to be a better me. While I cannot simply sit and blame my families, I cannot stay the same nor can I simply forget. You may be asking why. Why he can't just go live life and work and get married and forget. To me, that kind of walking away is a betrayal of the struggle and an abandonment of the people like me who also got lost as well as a burying of the truth. I cannot be the only zombie that's been walking around drugged up. I cannot believe that living that way is healthy or right. Maybe I haven't seen enough evil, but life has not actually been a walk in the park. I don't like being that disabled guy with the name.
You WOULD NOT LET ME BREAK. So now I have to be more. To fail to do so would be to let the lies about myself and the people around me fester and to dishonor the work you did. God gives us purposes. In McClean I kept asking why. I could leave. I could go somewhere else. But it's been too long here. It's become unfinished business. What would I be if I let the people around me break? Maybe you didn't know how much I relied on you. Maybe there's people that rely on me too.
I have to trust. I have to try to lift others up. I won't always be able to. At times I will fail. My heart was never in the rat race. I wanted to touch people. I feel dull and worn. But so long as I am breathing, I will continue to try to understand how to make this right. I don't have it in me to shut my eyes and ears to focus on money and raising kids without first untangling the trail of pills and hospitals. There has to be something more. I hope, wherever you are, you understand. It seems so many other people want to bury this. Just give the psychotic guy more happy pills until he shuts up and does something useful. I hope they are wrong about me. There has to be something more than silence in my future.
I created a series called creative medicine to warn people about the dangers of different prescription drugs. This is not at all an encouragement to use them. Quite the opposite. I learned wrong. I still have to take some. I try to take as few as possible. Lots of vitamins helps to make up the difference. My hope is that by educating Greenville County, I can avoid lots of pills out there. I can avoid doctors getting script happy.
I'll never forget Mini press. This is some highly dangerous stuff. The red pills. It decreases adrenaline. Makes you think things are ok. deactivates fight or flight. decreases nightmares for some people. BUT WHEN YOU COME DOWN... shit gets real. suddenly you're freaking out and can't stop. Nothing makes it stop. That's probably why they dye it red. it's an alpha-blocker. primarily for blood pressure. Beta blockers are safer, less powerful. The blue pills. Propranolol.
Gabapentin is a drug that I have strong feelings about. That stuff can get pretty crazy. Disinhibits behavior like alcohol. I start doing all sorts of crazy stuff. This one is scary. Mostly used for seizures, but also for shingles and off label for anxiety. Long term use, especially at high doses, can (in my experience) lead to muscle spasms, phantom sensations, and a loss of awareness.
Benzos are classified as anti-anxiety medications, but they can be used for some other things like sleep, or I think as add ons for seizures or akathisia, for example. Some benzos are valium, tranxene, ativan, xanax, and klonopin.
These meds have become slightly less popular for a few different reasons. Firstly, they are addictive. Secondly, they decrease alertness. Thirdly, they have certain long-term effects, primarily in memory, attention, and overall cognitive functioning. These effects can be permanent, regardless of whether the drugs are stopped. Can you guess how many of those Benzos I have tried? of the ones listed above only, I have tried all but xanax. These things are dangerous. They change your perception.
The hippocampus encodes memories based on emotional intensity. When you're on a benzo, it calms you and everything is just groovy. Decreases the intensity. What will you remember? How well will you function on the drug, and once discontinued? It also slows down your learning. You adapt more slowly because it slows down the neural transmissions via the GABA system. Benzos truly are dangerous.
When they talk about substance abuse and addiction... I was on a lot of meds by prescription. My use of prescription meds was not safe. That's why I talk about the meds. It's important that I talk about the meds. How dangerous they are. It reminds me not to take them. I still keep ativan. But only for when I need to go near hospitals. I can't go near memorial without freaking out. I was never into opioids, thank God. But drugs like benzos, alpha blockers, gabapentin, mirapex, and perhaps amantadine... some of these drugs are quite dangerous. clozapine numbed me out, making me unaware of how I was affecting others and how my mind was adapting to the world. Without natural emotional response, I wasn't learning about the world.
I think some people are missing the point. I needed a different perspective from medically perfectionist liberalized medicine. I wasn't getting the perspective I needed. I needed someone to point out the insanity of what was going on. And I found those people. I found them in a black female doctor, a male PA, two female LPCs, and a female NP internist.
These people are giving me that different perspective. Maybe I could have found more white male practitioners who could give me that perspective. Maybe not. But what I know for sure is that this has to stop. I picked people that were not part of the club on purpose. The meds weren't working out. I was misled. They weren't helping me. Now I'm on different ones. I have to keep in the middle, wherever that path is exactly. The doctors will always try. They can't help themselves. They need something to fix. Like a bored auto mechanic. I need people to stop trying to fix me. It's really run amuck. I can't imagine what my healthcare has cost in total. I need to focus on de-medicalizing my mind, unlearning what I was taught. Medication is definitely dangerous. I'm not actually trying to antagonize people. But I was misled about medication. It's dangerous. I was misled about Bipolar. I was misled about CBT and how men can be healthy as men.
Courage isn't just facing pain or uncertainty. Courage does also involve knowing when to say no. And that would be easier, if I wasn't raised to be addicted to liberalized medicine.
Do I know what the perfect middle ground is? Most definitely not. I do not. But what I am certain of, looking at my history, is that I was misled about what medicine can do. My body is too tired. Medically complex has got to be the body's way of saying "I can't keep doing this. I've got to slow it down. It's wearing me out." I've not been realistic. Whatever is or isn't wrong with me, I can't do the hospitals. God willing, I'll do whatever I can do, and I'll die peacefully. God willing, the world will back off angry so angry can back off too.
What I truly need is no more medicalized perfection and some privacy. Because to me this is Munchhausen's by proxy or something close to it. It's stressing me out. I need privacy. Medical complex trauma. You diagnosed it. It needs to stop. I know the doctors will find me.
I've got to focus on maintaining boundaries, minding my own business... accounting in limited amounts, and writing. Hopefully, Public Health is paying attention. To keep the kids safe from overmedicalization. Because I don't actually want to hurt myself or others, and the doctors weren't helping me. They're wasting public funding with this nonsense. Miseducated and misled. It has to stop. I need privacy and peace and quiet. That's what I need.
These storms get crazy sometimes. Interesting that the hospital uses the website. So I thought maybe giving them more information would help. But then I realized that's not what I need. I need to learn to shelter in place better, and let the storms pass. I need to get to know people in the community, not in the hospital. Hospitals aren't places for meeting people.
I need to let people in the community learn about me. I need to learn about them. I need to adapt. Because I'm tired of being "just" that disabled guy. I need some privacy and some peace. This isn't working, the whole shipping me from here to there to everywhere and trying every last therapy and drug. I've got to stay on the outside, in the community, doing what I can and not pushing too hard. That's why I firewalled my healthcare. That's why I stopped going out. Because I can't keep up with this.
The hospitals were a mistake. Bipolar was a mistake. It hasn't actually helped me. What I need, instead of meds labeled bipolar that do not lead to long term benefit or education for bipolar which teaches me the wrong things, is to go at a speed I can maintain. To not let others push me to do more than I can maintain. And maybe they can at least learn from my life as a case study of what not to do. Do not take a doctor's child and go gonzo with hospital insurance, medicate out the wazzoo and ship from state to state. WASTE OF MONEY.
Rather, give the child something they can realistically accomplish. Don't push them too hard. Let them be themselves. You won't end up with permanent disability and some miserable and bitter people that way. Otherwise, it's symptom whack a mole and hospital lottery all day long. Just like I can criticize public policy and still care about and support the actual work of the soldiers that protect us, I can criticize health policy and still care about and support the actual work of the health care workers. Because I know for a fact that they have better things to do then run circles for some doctor who wants to be med happy and perfectionist on hospital insurance. And when that insurance is no longer good and it doesn't pay so well, that strategy backfires.
AM I STARTING TO MAKE ANY SENSE YET? I sure hope so. Because my body is wearing out. It's been pushed too hard. And I can't fix it. The body doesn't work that way. You make it hard to believe in medicine with these policies. I sure hope someone is listening. Because we can't let this happen to our kids. We've got to slow down the med trains. It's not worth it. Not in the long run. Too much chaos. Not cost effective. We need to be more realistic about what we expect from medicine. The more these doctors talk, the more I have to shut my ears. Whatever you think you know, think again.
I have some resentments regarding Healthcare that I need to move past. Funny thing is, the harder I try to avoid attracting attention, the more I seem to get. Like the doctor is always watching and the next hospital visit is just a breath away. I thought writing those poems for the hospitals would be like a goodbye. They weren't helping me. Not that much. They had already done what they could. I had been there enough. Yet they keep inviting me back. Maybe they'll ship me to Georgia next time. I'm sure GA dept of health would love that.
I can't keep doing these hospitals. I don't have it in me. It just doesn’t make sense. It does look like Munchousens or something. It makes no sense. You'd think I had cancer or something. And I definitely do not. They cant even agree on what the problem is, much less what to do about it. Just a bunch of short term, bandaid solutions. Alphabet soup diagnoses. I still like most of the people, but its hard to believe in the mission. Then they seem to resent my cynicism. But we'll see.
I used to be an idealist. I can still play the part, but its hard to put the money where the mouth is. And it is hard to understand other people's perception of me. They surprise me all the time. Only lately not in good ways. Makes me wonder where this goes. It makes me nervous. Theres so much bitterness. Touch and go. Then they wonder why I don't speak. I wish the er would have respected my wishes and sent me home. Or at least told me the truth about the screwy lab results. Boggles my mind. We couldn't find anything? It makes no sense to lie like that. Unless they simply wanted to refuse treatment but couldn't legally do that. Of course they'll deny it. We're getting used to lies.
