Updates are in order as I haven’t about my personal life in a couple of months. I’m still wheelchair bound. I almost fell getting from my recliner to the wheelchair five days ago. My knees started hurting really bad and my legs just locked up. It was a scary morning. It took a lot of effort to get back into my recliner in my bedroom. Been there ever since.
Saw a case worker this afternoon. They offered to get me more services. I’m not getting much of anything right now other than a home health nurse coming in once a week, a psych doctor doing telemedicine every three months, and a home health doctor coming in every six weeks. I can’t even get help with moping the floor or taking out the trash. Mom and Dad still do that, but both are disabled themselves and in their late seventies.
My mom had knee surgery last month. Her mobility is still limited. She has to do physical therapy twice a week until the end of summer.
I used to be in physical therapy. Three times actually since I moved to Oklahoma in February 2023. All three times they gave up on me. I was even in a therapy hospital last September. My knee pain is bad enough I need Tylenol and iboprophen three times a day. In the hospital, they stopped giving it to me even though it was in my notes that I took Tylenol and iboprophen at home. The pain, without the meds, was bad enough I couldn’t even stand up without help. Two other times I tried therapy at home only for the company to give up on me when I wasn’t making fast enough progress. Hell, one ghosted me after only one session. Haven’t heard from him in over two months.
Needless to say, I’m not high on therapy at all. I don’t mind doing the work. I do mind people giving up on me without notice. It’s like they quit on me because I don’t fit into a nice, neat box.
The thing I really need help with is cleaning. Since I can’t get to the bathroom on my own (no handicap access in my house), I have to go into the bathroom in a bucket and have my parents dump it. Beyond disgusting. I can’t even get help with moping the stains off the floor in my bedroom. Needless to say, my room smells like a barnyard, and no one wants to help clean it. Both of my parents are elderly and disabled. They can only do so much. But, damn, I am tired of living around my own pee and poop. People in prison get better services than I do. In short, my life isn’t much better than being in prison.
I’m at my wits end. I can’t stand living with my elderly parents anymore. I’m tired of their complaining and irritability. My dad is almost deaf but he still tries to talk to people in different rooms even he’s almost deaf. Even hearing aids don’t help. He talks real loud and groans real loud when in pain, which is almost all the time anymore. I’m tired of his complaining. I’m tired of him not being able to hear me.
My mom isn’t much better. She can barely see yet refuses to wear glasses. She can’t even read a recipe card now. At least she doesn’t drive much. I don’t know why she won’t swallow her foolish pride and get glasses. She’s being really stubborn about this even though it’s obvious she needs glasses.
Physically I can stand up, transfer to the bed and wheelchair. But it’s pointless as all the doors in the house are too narrow for wheelchairs. I can’t even get into the bathroom. I’m maxed out on over the counter pain medications, force myself to do exercises even when sitting down, but I still have lots of pain when I try to stand up and walk.
I’ve given up on my family making the house wheelchair accessible. I just want to go to a home that is wheelchair accessible. I don’t care if it is assisted living or long term care. I keep getting turned down for homes. Some homes say I am too young. Others won’t take mentally ill people. Some say I’m too heavy. I mean, what nursing home doesn’t have lifts? And I don’t need any damn lifts. I just need a place that’s wheelchair accessible. Why is this so tough to understand.
At this point I don’t really care about losing most of my funding to go to a home. It’s gotten unbearable here in my parents’ house. My dad has lost patience with me and is making unrealistic demands. My mom isn’t as helpful and more irritated than she was even three months ago.
In short, I decided I want to go to a home. I want to have wheelchair accessible doors and hallways again. I want to have conversations with people who aren’t senile, stubborn, and bitchy even if it is just staff members and not residents. I’m tired of this shit. I never should have left Nebraska when I already had wheelchair accessible housing. Burns me that most houses and public places aren’t really wheelchair accessible.
And the worst part is my parents are starting to act like it’s all my doing that I ended up in a wheelchair, especially my dad. Can’t even rely on family anymore. And placement hasn’t come through even though we’ve been looking since last September.
Took a couple of days off this weekend. Back to the grind. The last several days I have been up most of the night and gotten my best sleep in the afternoons. I still sleep like ten hours a day, but most of it is during daylight hours.
I’m back on the Turmeric. I think it’s helping with the bad knees and ankles. I started taking Vitamin B and Vitamin D supplements a couple of weeks ago. I think I have more energy and optimism overall now.
I think I am losing weight. If the way my clothes fit is any indication I really am. Most of my shirts are quite baggy now. Might have to drop down a shirt size. It also looks like I’m carrying less fat on my abdomen. My calves are less swollen than six months ago as are my thighs. I don’t eat much anymore besides protein and vegetables. I try to avoid sugar and carbs.
Got turned down for a long term care facility. I’m not shedding any tears over it. In reality I don’t want to go to long term care. Ideally I would just stay in my current house and just widen all the doors to be wheelchair accessible. My parents aren’t on the same page as I am. They aren’t enthusiastic about making such modifications to the house.
I have come to the conclusion that I don’t want things to be easy. I want to struggle to get my walking ability back. I want people to doubt me. I want to be fought every inch of the way. I want even my own family to actively work against me. They originally doubted I could graduate college with schizophrenia. Proved them wrong. They originally thought I couldn’t live alone with schizophrenia and on disability pension. Proved them wrong for over seventeen years.
Most people thought I made a mistake when I went to long term care to get better. I was flat out told I would die in that facility. Well, eight months later I walked out the front door on my own two feet. I went in that facility on a hospital stretcher. I walked out on my own two feet after only eight months.
I’m facing doubts again. After this third stay in the hospital, I lost all of my mobility. Physical therapy hospital didn’t help at all. Neither did the home therapist. They all gave up on me too soon. Sure, it took a few months. But I am back to walking short distances within the same room. I can transfer into the wheelchair. It is a foldable wheelchair so I can get it through doors. I could already get everywhere in the house if the family would just break down and pay for the modifications.
As far as modifications go, all they would need is to widen all the doors, put a railing in the bathroom, and get some of the clutter out of the house. My parents have a hard time throwing anything away. I swear if I outlive them, I’m going to rent a dumpster and throw tons of Knick knacks and crap in. I refuse to deal with it after they are gone. I won’t live the life of a hoarder. Was forced to do it as a kid. Forced to do it again after being on my own for seventeen years. After my parents are gone or moved to a nursing home, never again.
Oddly I’m not feeling hurt or betrayed by my family not believing in me. In some ways they have never believed in me. I’m going to get mobile again, at least for short distances. I am going to keep losing weight. My goal is to eventually get back to the same weight I was as a freshman in college. I could easily walk three to five miles a day back then.
I might never be able to walk that far again. But, dammit, I refuse to give up. Between being severely bullied by my school mates as a kid, twenty five years of schizophrenia, three years of congestive heart failure, surviving eight months in a long term care facility, moving two states away to be closer to my brother (at least he believes in me), and seeing crazy ass tech advances in terms of AI, automation, biotech, fintech, etc.; I’ve come too far to cash out now. Give up? Not happening as long as I got breath in my lungs.
I don’t know why my parents refuse to make the modifications to the house to make it handicap accessible. Honestly, I don’t care. I’m going to get better and mobile in spite all the road blocks people keep throwing at me. I want to be doubted. I want to be told I am a liar and full of shit. It just makes me more determined to keep beating the odds. Beating the smart money has been the mode of operation for my entire life. Personally, I think the “smart money” ain’t as smart as it’s cracked up to be. I just keep proving them wrong because that’s what I’ve done my entire life.
My caseworker and my parents are trying to get me into a long-term care facility. I really don’t want to go back to one of those. I despise the idea of losing my freedom and finances. I just as well be sent to prison as far as I’m concerned.
I live in a house with no stairs. But the doors aren’t wide enough for a wheelchair. Any suggestions I make to widen the doors fall on deaf ears. It burns me that I still have all of my intelligence but might still have to go to a long-term care facility because of lack of handicap access.
I would like to get a home health aide that comes in once a day to help with things. I had to fire my cleaning lady a few months because she wanted me to sign off on her billing her company for time she didn’t work. Can you say disability fraud? Glad I got rid of her.
I watch a lot of videos and news programs talking about the possibility of humanoid robot assistants becoming available to the public within a few years. Yet about the only people who don’t think I’m totally full of crap when I talk about this are some friends online and my older brother.
My thinking is that I hold on for a few more years and get a home health robot to help around the house since none seem to be available for me. Hell, it took a miracle for me to get onto a service where a doctor comes to see me in my house every six weeks. We found out about this, not through my case workers, but from a friend in my mom’s church.
I’m afraid that I will get sent off to a nursing home due to lack of mobility, lose my freedom, lose my money, and lose the family house just right before EVERYTHING changes with home robots, automation, AI, improved personalized healthcare, and possibly even Medicare for All.
One thing I despise about being on disability is that my earnings are limited before I’m totally thrown out of the system. And since the USA refuses to act like a civilized nation and institute Universal Healthcare, I’m stuck in poverty just so I can get my treatments. And I’m damn sick of it.
I lived in a long-term care facility once for eight months. Hated damn near every second of it. Had no freedom. Had no privacy. I was chastised for not socializing with the other residents even though most were senile and or nearly deaf. The only thing worse would have being in prison.
I don’t really tell my parents how much I despise the idea of going to a home. In the first damn place, I don’t think I would need one if the house was more wheelchair accessible. But they won’t entertain the thoughts of making the house more wheelchair accessible. All they would have to do is widen the doors to my bedroom, the bathroom, the front door, and the back door.
As far as transportation goes, that is being solved already in spite of the run around I get from social services. My brother bought a Tesla with self-driving capabilities back in the spring. Just the other day he and my niece had to go to Kansas City (which is about six hours from our town). During the trip up and trip back, the car did over 98 percent of the driving on autopilot. I was calling this almost ten years ago. Now it’s pretty well mainstream.
I had a car accident in late 2015 that really screwed up my back and knees. I was talking about how nice self-driving cars would be when they become available. I remember one of my Facebook “friends” said, and I quote, “It will be a cold day in Hell before self-driving becomes a thing.” That was less than 10 years ago. Bust out the parka and long johns, because it’s getting awful damn chilly these days.
I’m seeing the same attitude towards robotics that I saw against driverless cars about 7 to 9 years ago. I have given up on trying to convince people that humanoid robot assistants will be a bigger game changer than even smart phones, military drones, or even the internet itself. Most people don’t want to listen, let alone people of my parents’ generation.
Once during the pandemic, I joked in one of my futurists’ groups on Facebook about having a goal of riding in a self-driving electric car with a robot friend, smoking a marijuana cigar, while driving past a police station before June 14, 2030 (my 50th birthday). If I can hold out for long enough to get a home help robot and I don’t get sent to a home before then, I’m going to make that dream come true, so help me God.
Even if my parents go get too impatient and send me to a nursing home before I can make my dream of robot assisted independence come true, I’m going to do everything within my power to get well enough that I can leave. If my parents don’t want to make our house wheelchair accessible, well that’s their hangups. Sucks to be elderly and not see the possibilities that probably will come by the end of the decade.
Hell, I want them to fight me on this. I want people to tell me what can and can’t be done/ I want people to throw up roadblocks. I want to be told I’m a liar and I’m full of shit. I have made an entire life of coming back from setbacks and proving people wrong. Their hatred and nay saying will just make my story telling even more interesting than it already is.
After surviving 25 years of schizophrenia, 16 years of Section 8 Housing, 3 years of congestive heart failure and being wheelchair bound, I’ve lost most of my fears. I don’t want things to be fair or easy for me. Life isn’t fair. I figured that out when that I was six years old. I figured out that life isn’t fair before I figured out Santa Claus was fake. I’ve been fighting my entire life. Why should the next few years before some major breakthroughs be any different? I have nowhere to go but up. And I’ll be damned to let even family stand in the way of my freedom and independence.
I’m having a good Christmas season so far. Got to talk with some old friends over the phone for over an hour today. She found a new job a few weeks ago that pays more than any job she ever had. Her husband (also a friend of mine) is still working 60+ hours a week as a delivery driver. They think he will try to find something in academics soon now that they aren’t living paycheck to paycheck anymore.
Our conversation covered mostly history and geopolitics. I don’t have many friends I can talk about those things with anymore. Most of my friends are having tough times with mid life crisis kind of things. I miss those conversations about history and current events. It was like being back in college, if just for only one hour.
I sleep most of the daylight hours anymore. I think part of it is depression and part of it is anemia. I’m not looking forward to probably having to go back to a long term care facility. But my mobility isn’t coming back and my house isn’t handicap accessible. My parents aren’t in good health and probably have only a few years, at best, left. Part of me all three of us won’t make it to see 2030.
It really breaks my heart to be in decline just right as things are really changing science and tech wise. I am convinced that we as a society will make more scientific progress in the next 20 years than we made in the previous 300. That is, if the politicians and voters quit screwing up.
Saw my home health nurse today. My mobility isn’t coming back like I had hoped at all. I’m still angry about physical therapy giving up on me after only one month. I’m angry that no long term care facility had a place for me.
It’s pretty damn obvious at this point that I am wheelchair bound and need accommodations. My case worker sees it. My home health nurse sees it. My doctor sees it. My parents see it. Hell, I saw it long before anyone. About the only people who are still in denial are my friends about my age. People can be awful stupid about some things.
My friends are the type of people who believe anything is probable, not possible, through positive thought and hard work. Hell, the believe if I don’t achieve mobility and good health again, it’s all my doing. With friends like that, who needs enemies?
I think my friends are in denial because it would force them to reflect on their own mortality and that they aren’t young anymore. It would also force them to reflect on the fact that one can do everything right and still lose big. Sometimes things just happen for no reason. My life is a prime example of this.
Even though I don’t go out or socialize in person much anymore, I still keep busy. I was recently demonetized on Medium. No explanation and no way to appeal. Really irritated me as I was making some decent money.
In some ways, they did me a favor forcing me back into Word Press on a regular basis. Even though I haven’t been posting much over the past year or so, I was still getting a decent amount of audience. Some days I would check, and I would have 40 or so views on a single day even though I hadn’t posted in weeks. Maybe the word is getting out there.
Sure, I made more money on Medium. But I got better audiences on Word Press. But I guess nothing lasts forever. There were also a lot of complainers and whiners on Medium. I don’t miss them. First World problems in most cases. I swear people like that never had to deal with bullies and setbacks as kids.
I was bullied a lot as a kid. Ended up in several fights, most of which I lost. But I’m glad I went through it. Made me confident in my ability to survive and adapt, especially as I got older. No I didn’t enjoy it at the time. But I thank God every day I dealt with some hardship as a kid during prosperous times.
I was born in 1980 and spent most of my formative years in the 1990s. We still had the latch key kind of things. I had my freedom, like most small-town kids. And the grownups usually let the kids solve their own problems unless we got too destructive or violent. Much of that behavior would be considered child abuse these days.
Personally, I think real abuse is sheltering kids from the consequences of their actions, not teaching them how to cook or do basic repairs to household items or never letting them solve their own problems. Hitting your kids isn’t the only form of child abuse out there. I think not preparing them for adulthood and its ups and downs is every bit as abusive as punching them in the face.
In some ways I’m glad I didn’t have kids or get married. But that is mostly because of the schizophrenia. While I don’t particularly enjoy living with my elderly parents, I know I would enjoy living in a nursing home (been there, done that) or being homeless would be even worse. It’s a blow to my pride that I live with my parents after being on my own for seventeen years. But I try not to complain, at least publicly, because I know it could a lot worse.
I’ve always taken mental health seriously. Even more so now with everything changing so rapidly. I’m under no delusion that I’ll ever make enough money to support myself off writing. Vast majority of even paid writers don’t make above poverty level wages off writing alone.
I’m kind of burned out on computer games. And almost every time I try to socialize with anyone outside of immediate family, these people are in awful moods all the time. Nothing can make most people happy.
These people are going to be really unhappy in a few years when AI and automation take more and more jobs, especially since we have almost nothing for social safety nets. Rest assured; it will happen. A lot of people will eventually lose their jobs to AI and automation. I’ve been trying to tell people this for over a dozen years. About the only people who listened are my retired elderly parents and my best friend. She’s always grumpy and grouchy now, it’ll only get worse when she loses her good paying job she’s complains about almost daily.
I know it sounds like I don’t sympathize with these people whose jobs are on the robot chopping block. But you would be wrong. I lost my career and everything I worked for many years ago due to my mental illness. I did everything right; worked hard in school, stayed away from drugs, stayed away from credit cards, stayed out of trouble, etc. And I still lost everything.
Millions of people will find themselves in the same boat within several years. Not their fault a machine can probably do their jobs better than they ever could. Soon they will be cheaper too. In my case I lost my career in my twenties rather than my forties when I would have had a mortgage, a couple kids to send to college, and a retirement to save for.
In spite being surrounded by grouches, I’m looking forward to Christmas. I didn’t ask for any special gifts. I think a large dinner of spiral ham, stuffing, green bean casserole, etc. is enough of a gift. Don’t know how many Christmases I have left, but I intend to really enjoy this one. It’s just too bad that it doesn’t snow much down here in Oklahoma City.
For the official record, I didn’t give up on my writing. I just took a much overdue vacation.
With that out of the way, I feel the need to update my appreciated readers on what I’ve been up to in the last several weeks since I last posted.
In early September, my parents had to call an ambulance on my behalf to take me to the hospital as I was having problems breathing. At first the doctors thought I had pneumonia, but even ten days of anti-biotics didn’t do anything other than screw up my stomach and bowel movements.
With the anti-biotics not working, one of the doctors had the gall to suggest that I might have early stages leukemia. This was in spite not having extremely elevated white blood cell counts or even so much as a fever.
In short, I spent ten days in the hospital on bedrest and the hospital didn’t even figure out what was wrong with me. I am now a believer in medical misdiagnoses being a very serious problem in modern medicine.
It turns out it was merely a virus infection in my lungs. I was also having problems with retaining water due to my congestive heart failure. My swelling took place mostly in my crotch and hips. The swelling was bad enough I couldn’t wear pants the whole time I was in the hospital.
I was put on diuretics, and I must have lost over one hundred pounds of fluids when I was in the hospital. Since I was on bedrest and having serious pain in my knees from my being forcefully taken off my three times a day Tylenol routine, I had to call a nurse every time I needed to urinate.
This annoyed some of the nurses. Sometimes they didn’t get to me in time, and I ended up peeing my hospital bed. Yeah, I’m a 44-year-old man talking about wetting the bed. Major blow to my pride and ego I tell you.
After my ten days in the hospital for my not pneumonia, I was sent to physical rehab for two weeks. My God in Heaven, that was an experience.
For starters, I wasn’t able to do much of rehab because my knees were hurting so bad I couldn’t even stand for more than ten seconds at a time. I was taken off my three times a day Tylenol regiment that had worked extremely well for almost two years while in the hospital.
Due to the forced bedrest, lack of a walker or a walking cane, I couldn’t walk the whole two weeks I was at physical rehab. After being back home for a couple of weeks, I can walk in my office with a walker. I still can’t walk well enough to get to the bathroom on my own. I feel so ashamed.
I feel like I spent three weeks in the hospital, most of it probably needlessly. I did get a new c-pap machine and got off a couple blood pressure meds.
I now take only two blood pressure meds and a couple meds for congestive heart failure. Half of the time my blood pressure is still too low, I’m talking like 110 over 55. But at least I’m not in the hospital anymore. September was a damn nightmare.
If I get to tell the young kids thirty years from now about how I spent the Pandemic and Great Reset, I’m so going all George Patton inspiration speech the day before D Day on this shit. I hope you find the humor in it.
I will be able to tell my hypothetical grandkids that, “Well, your grandpappy survived the pandemic and the Great Reset of the 2010s and 2020s without getting so much as a sniffle. I was also a part of a resistance to the rising tides of authoritarianism that was rampant among his family, neighbors, and friends in Red State America. I actually convinced a few of the insanity of their ways and got them freed of the MAGA cult.”
“Grandpa also ran errands for disabled shut in neighbors while making a small profit on Robin Hood with my stimulus money. I was a fan of Wall Street bets and a Diamond Hands crazy son of a bitch named Roaring Kitty. I was a small part of the Apes and Wall Street bets and Dumb Money who helped bring down a few shady hedge fund managers and made themselves a few bucks in the process. Nothing like using the free market itself to punish the worst abusers of said free market.”
“Grandpa also survived heart failure, lost over170 pounds, moved out of rural Nebraska (yes, Grandpa was part of the ‘rural flight’ migration to urban areas) to the greener pastures and red dirt of Oklahoma City. I had some really cool friends, and actually started turning a profit with his crazy son of a bitch mad man rants.”
I won’t have to say, “Well, your granddaddy pissed away a golden opportunity to reinvent himself during the covid pandemic and Great Reset.”
Obviously, it’s not as cool as surviving the Dust Bowl and bringing down fascists and tyrants in Nazi Germany and Imperialist Japan. But I guess it’ll have to do for us “middle children of history.”
Another day of being mentally stable. Haven’t had any kind of breakdown in over three months. It helps that I avoid stressful people and conflict as much as possible. Do most of my socializing online these days. It’s just easier to type what I’m thinking than just verbalize it. My illness makes me pick up on subtle cues very easily. I often pick up conflicting cues. Makes it really tough to read people, especially in person.
Since many of my in-person experiences have been quite negative over the years, the default is that when someone goes out of their way to see me, I assume I’m in trouble. My family thinks it’s tragic that I always assume the worst when people come to see me in person. It’s even worse when I am summoned into an authority figure’s office on their terms. I’m keenly aware of power dynamics to the point it’s crippling.
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An Irish personal evangelistic site. I'm not representing a particular church, but it's broadly evangelical in tone. My aim is to cover topics I've encountered in discussions I've had over the years, mainly here in Ireland..
A Life Of Mental Illness 