Well, it went back up again. 144/87. I'd better update the psychiatrist. Tomorrow it's the picking up of the meds, calling the internist, and visiting the house again. Y'all know who you are. Don't get too involved in this shit. You know my name. Use it if you need to. But this blood pressure thing has to have my attention right now. My foot is usually best in the middle of the day. So that's when I'll do my necessary driving. Medication refill. Go by the house. Counseling checks on me at 2. This is my life. now you all can see. This is it. day by day. Is it pretty? This is me trying to mind my own business. Not cause harm. This is it. You don't have to see me. You don't have to know me. You can mind your own business too. For me it has to revolve around doctors and symptoms. No Center or person with letters after their name can change that. I don't know how much you want me to do. But my body is only so strong. The medical tests can't be faked. I'm not that creative. Unless you want a medical following me around to keep the records, you may have to rely on the numbers in the charts and the numbers that I get. I'm not so creative that I can create patterns. I'm not interested in trying. I'd like to work out the problems I have and not endanger anyone. Pretend you don't know me if you don't like it. Just find me a little less interesting, if you could. You've got other things to talk about and to do. It's not like I said to myself, well maybe I'd like to be medically complex. I didn't come up with the term. They gave it to me. One of their brilliant ideas. I'm trying to pick up fewer ideas. Stick with the long lists on the charts. All the letters. I'm trying to let those letters stay on the charts. focus on reality. Right now that's the blood pressure. There's only so much more I want to know.
Name Avoidance Disorder
How many names do I need to know? Seriously? Do I need to know everyone's name? But oh no, he doesn't know this person's name or that person's name!! National Emergency. Call 911, he doesn't know my name! How many names do I really need to know?
If they ask me to consult XYZ one more, I'm going to go ballistic. He is not the only doctor in this world, and it really is pissing the doctors off to have other doctors giving feedback. It's not ethical. We need to take that name down a few notches. It's pissing people off. If I have to be the one to say it, then I'll say it for the benefit of the community. It's just a name. Take it down a few notches.
Some people in particular need to hear that and they're rather pissed off at me right now. There are other people in this community and people with my last name do not need to be controlling the community or causing chaos. It's getting old. They're getting pissed off. It's just a name and people with this name do not know everything. Including but not limited to myself.
Ethics and Control
The thing about people with letters, the doctors, the social workers, the counselors... They don't like being manipulated. They don't like it when you don't follow their instructions, they don't like having opinions fed to them, they don't like not being included in decisions, they don't like other people with letters interfering, and don't like being gossiped about. I've made these mistakes. But these people with letters don't stop interfering with each other, then shit storm gets worse. LET THEM DO THEIR JOBS. DON'T TALK ABOUT THEM. DON'T FEED THEM OPINIONS. I CAN'T CONTROL THEM ANYMORE THEN YOU CAN. And if you have letters after your name and someone with letters finds out you contradicted your instructions for someone under your care, that really pisses you off.
The internist said stay at home. STAY AT HOME. HOW HARD IS THAT TO UNDERSTAND. AM I GONNA HAVE TO RECORD HER VOICE AND PLAY IT BACK FOR YOU? IS THAT WHAT IT TAKES? YOU THINK SHE APPRECIATES THIS? No, you want me running around town. If my right foot is numb when I'm driving, what then? The walking is easier then the more targeted motions like driving. There is common sense here somewhere.
You people with letters better mind your own damn business and stop interfering with each other. It's not helpful. It's really the Internist, the Psychiatrist, and the Counselor I need to follow right now. The GI doc, I just take the prilosec each AM and watch my diet. The neurologist did her job. The Psychiatrist, I have to schedule the appointment because they refused to coordinate care and I'll have to drive to that place or do the video appointment and he hates when I do the video but I really do not think I need to be driving a lot of places and that particular place is not easy to drive to. YOU THINK YOU CAN COORDINATE A LITTLE BETTER ER/MEMORIAL? Anyways. I suppose I could message the psychiatrist about moving the refill so I can drive to my place and go to the pharmacy right near it instead of driving multiple places. They just love hearing from me. No, they are not going to be happy till I'm running around town. They got a schedule to keep.
Just took my morning meds. doing the calm app. If I'm good at communicating in writing then maybe that's what I should do. I'll journal every single day. That'll be your communication know you don't like it. But when I say my say my voice isn't great, again, and again and again... well maybe there's something to that. When I say my voice isn't good, do I need a letter from the neurologist saying that i shouldn't talk much? I like to rest it. I'll need to check the blood pressure again at noon. trying to get it below 125/80. when the lower number goes above 80, that seems to be when my foot doesn't work as well. The left one is rather perky.
No people will always be pissed off I don't say much. Some people don't say much and do just fine. If I can be ok with it, why can't other people? communicating visually isn't a crime. Gets on people's nerves. I don't speak loudly. Not for long periods.
I need to wash up. Check my blood pressure around noon, then try to go by my place to get it ready for the repairs. Tomorrow I'll have to focus on getting to the hospital to get that medication. How hard can it be to get an LPC, an internist, and a psychiatrist to work together and mind my own business? Keep the rest of the snakes at bay? Gonna have to find out, day by day. The rest of the people with letters have done their jobs. There's only so many places you can ship me. And if I keep driving like this, that would contradict pretty much all the people with letters. Yet you want me running around town, from here to there? Brilliant. Keep it up. Soon we'll all be dead. Soon we'll be having wellness checks from public safety. That'll make you real happy, won't it? You think police want to worry about me? you think they don't have enough on their plate? Without wellness checks and stuff like that? You think people driving around without feeling in my right foot?
Sunday, Medical
Yesterday my blood pressure was 129/88. My right foot still tingles and stops responding at times. The headaches and weird head sensations have calmed down. I think that was more stress. Still some chest pain yesterday. Liver occasionally feels weird. Trying to make sure I take the Prilosec on the empty stomach and the others with food.
I've come out of a coma twice. My body is not that strong. You'd better wipe those damn smiles off your faces. This shit isn't funny.
I really don't need fancy things. I need to not be running around town, exhausting myself when my body doesn't reliably function. I need to not have to call EMS. I need to avoid stress and allergens, which happen to occur in many places around town. I mean right now my right foot barely moves! And you want me driving? Brilliant. I have to keep people safe too. How many EMTS and doctors have to tell me to rest and take care of myself before people get the point? You don't just "FIX" these things with drugs and support groups. It takes time. It takes rest. If I want to mind my own business and take care of my body, then maybe that's what I should do, instead of getting another doctor or counselor or somebody with letters after their name telling me to do that.
Hallucinations can come from all sorts of things. Medication, lack of blood sugar, lack of oxygen, and yes, mental illness. I know they are not real.
I don't have a problem with the internist and yet they want more opinions. Just yesterday they wanted me to ask my brother. You think the doctors appreciate that? you gonna let them do their job? They have medical degrees too. maybe they would appreciate being allowed to do their job without other doctors being involved. They've mentioned that a time or two. Not the internist. Not yet anyways. But you keep this shit up, then yeah no one will want to work with me simply because there's too many opinions involved. Less opinions would be fantastic. We can't control the world people. It pisses people off. I can handle some pain. Within limits. If I didn't think I had problems then I would be running around, doing stupid shit. Yet I'm at home trying to take care of myself. SMART MAYBE?
Yeah, I get frustrated. Everybody gets frustrated. I'd rather not spread it around. From this center to that center. Everybody knows the list of diagnoses. Alphabet soup. It's on the charts, so what does it matter? I need to go around talking to people about that shit? I don't think so. I don't have a referral to gateway house. How's phoenix going to help with this? You want me to pass out driving? you want someone to have to call EMS? You think people like seeing this shit?
I don't know how to help people. I'm trying to help myself. What are they going to learn about VNS? The neurologist gets nervous about it. Maybe I should be too. Gotta take something seriously. You don't want me embarrassing people or making them uncomfortable or having medical emergencies? Maybe I should rest. Eat. sleep. avoid stress. The things that have worked since the beginning of time.
If I can think clearly enough to say something useful, I'll say it. Otherwise, I'll keep my silence. I don't need a lot of conversation. The left foot almost always feels 100% normal. It's just the right one. I guess it's my dominant foot. Right-handed. Maybe with the stress and relying on my right side too much. But I have had alternating sensations on the right or left side of my body. I don't know exactly what that means. It mostly comes out in the face. Sometimes I feel twitchy. Right foot is barely moving. I'm supposed to work the different parts of my body regularly. So I get up and I walk, Stretch, that kinda thing. Just basic stuff. I'd rather not shoot my mouth off in public right now. Sometimes I say weird shit. And typing is easier then talking. Especially when people are lying to you. Trying to manipulate you. They can read. They got letters after their names, most of them.
Yeah I like music. I like the Calm app. I used it a lot yesterday. The breathing exercises, the mood check ins, the music with the frequencies that enhance sleep. The sleep enhancing music was a god send. Right there on my phone. Didn't need to talk to anyone. Helped me just fine. I've been trying to get more regular with that app. I get bored, I get frustrated. The tinnitus isn't so bad. Sometimes I think about getting earplugs from the store. Then I worry that I might not hear something important. The CPAP seems to be doing fine, other then that filter door being broke and me not being able to change the filters properly. Tried to fix it. The supply store gave me the run around. The doctor said I had another two years before it could be replaced. That was about a year ago. So I wash the tubing, the mask, and the chamber, and I replace the tubing and mask, and I fill it with the distilled water.
And I listen to people complain about my medical problems and my counselor and my doctors and then I listen to the doctors complain that I'm not following instructions and we're back to the blame game. Funny that the only person not trying to blame someone is my counselor. Funny that they'll never give her credit for doing her job. You wanna demonize someone? demonize me if you have to. Give the other people a rest maybe? it's pissing them off. And someone will end up dead or seriously injured if this shit doesn't stop. Get off your high horses. You're not that smart. You're not that great. Do your damn jobs, keep your mouths shut. Mind your own damn business. Don't make me contact SCDHEC or DSS. I can make reports just fine. I really do not like to.
I've got to get to that hospital to get the Seroquel refill. by tomorrow. Not feeling great about driving or especially going to that hospital but they insist on filling it there and they refuse to transfer it to my pharmacy. That's been a major issue for me. But God forbid I ask someone for help. To even drive somewhere for me. I need my headphones. It helps with the music. Better go eat something.
Medical, Post ER, 15 days
I figured today I might as well review the medical some more. there's plenty of it. I've lost my privacy. What does it matter to lose some more.
ER - Abnormal Results
Acetaminophen Level - Low
Ketones - High
Neutrophilis - High
Lymphocytes - Low
Anion Gap (whatever that means) - High
CO2 - Low
Nothing wrong Doc? you sure? You kept me for a reason, yes? well there you go. You did your job. The staff can save their comments and threats. And if they start a catheter and refuse to change the bag, there's a lawyer for that too. Don't act like you don't know that I'm in pain. You got eyes and ears. Don't pretend I didn't say something. And instructing me to change it myself. There's malpractice right there. Yeah, I know big words, too. I'd rather not use them. I'm tired of this shit. You got cameras and microphones. Play them. See what happens. You want a lawsuit? you want the state asking questions? you better be damned careful. I really don't think we need to go down that road. Scrubbing the records won't account for the time and the conflicting stories.
EKGs were normal at the ER and again at the internist. The Nurse left a mychart message after yesterday's update. VM was full. Need to call them back. Blood pressure was better yesterday though. like 128/80, down from 134/80. Less pain. Feeling more grounded. There's a start there.
Ordered some hypoallergenic sheets. The pillow cases and the mattress cover were already that, but the sheets themselves were not. Details.
Neighbors are caring for the cat. That's nice. He makes me smile.
Stomach has been better, but my strength is not great. Trouble standing, walking, talking, driving. That's why I don't like running around to this center and that center. The talking does seem better since the VNS decrease. Last night I had one of those feeling like I was drowning in saliva moments, but nothing I'm not used to. The walking isn't really big problem, but standing for long periods isn't easy, and if your right foot has transient numbness then driving is not a great idea, ya think? gas pedal, brake pedal? Doesn't take a genius. It'll go away. that doesn't come up much. But I'm still having it today. They say stay home for a reason. The Internist, counselor. They're not stupid. You want someone running around who functions like this? People gonna get hurt that way. Oh you need to be around people, you need to be around people! Not if they're gonna get hurt, I don't need to be around them. Common sense.
Why this has to be a war, and I can't just try to mind my own business, I will never understand. Maybe I"m stupid that way, but you don't labels or degrees to understand this stuff. Common sense. Cuz I don't actually fancy food, fancy clothes, fancy this or that. Yeah, I use my computer and phone a lot. Long fingers. Easy to communicate and manage life that way. Get over it. Move on. You want me to get over it and move on? you too. Get over it. Not the end of the world.
Proud? No, I'm not proud of this. I'm trying to get by, believe it or not, and one of these days you'll have to believe something I say and stop trying to rearrange it to suit your preferences. This doesn't have to be that messy if you don't try to control me. There doesn't have to be threats or intimidation. There can just be life. And it pisses people off in the community when others are too controlling. It's not respectful. No one likes being manipulated. Not MIP. Not my counselor. Not anyone. Gateway and Phoenix would not appreciate it either. And yet I'm supposed to force my counselor to come up with a referral that she doesn't agree with. People don't like being used. Stop trying to sabotage. I'm taking the damn meds. I have not had any substance other then caffeine and meds. Get over it. Stopped chewing the nicotine gum because I never even smoked and I don't understand starting a new substance. It's like you're trying to create more evidence for a substance abuse problem and I've had it with you people. You wanna paper trail? well here we go. Let's have paper trails. You can't fake these medical problems and they're nothing new. You drew the labs. Your names are on the paperwork. Deny that. The problems haven't changed much.
Paranoid? no. Just not interested in manipulating people or being manipulated. Some people keep to themselves and do just fine. If I have problems I can't manage, I keep them limited to professionals because these kinda problems can scare people. I don't like them either. Why I'm required to be around other people that seem uncomfortable when I'm around, I haven't the slightest clue. How that helps anyone is still a mystery. I've done that plenty. Plenty of centers. They have limits. so do I.
I want to rant a little, I'll do it in the way that I need to do it. You don't have to listen. In fact, you usually don't but hey, I'd rather not run around like a maniac. Now they're like, well no doctor's gonna wanna work with him. Well, gee, you think I like working with you? This isn't playtime. not for me. You got names yeah. I do too. It's on the damn chart. You can read. I respond to my legal name just fine. Sometimes I feel like I need to be serious. I know you can use the name on the chart. I know you don't have to lie to me. I don't like your face anymore then you like mine. You wanna demonize me? You wanna demonize my counselor for putting up with this shit? roll the dice. People have limits. And they got lawyers too. Just let it rest, and I will too. It's not funny. Don't you give me your fake smiles, don't you patronize me. Mind your own damn business. Don't you threaten me. Not in the ER, and not in MIP. You don't like me, you don't have to say anything at all. And if I choose not to say anything, maybe it's because there's not a whole lot to say about this that's helpful to the people present. Maybe it's because I really am trying to manage my own demons, rather than spread them around. And whether I'm gay, straight, or whatever really is not relevant to these conversations. My identity as a man or woman or anything in between is not relevant to these conversations. I'm not at the hospital to make friends. That is not the damn point. And with the kind of shit you're trying to teach me, maybe it's better that I don't learn. Because this is messed up. Let's not play games here. It's not funny. You wanna restraining order? keep your damn mouth shut. It's not funny. I'm not trying to learn names. That's not the point. Do I really need to know everyone's name? If it's on the records, I know your name and you know mine and it doesn't have to be a big deal. I have no problem when you use the name on the chart. I don't even object if you call me shit like darling or honey, so long as it's clear you're talking to me and it's not dehumanizing. The "it" and the "shemale" and the rest of that shit has got to go. Get over it. You don't ask me my sexual orientation. it's not your business if it's not on the chart. Get over it. You embarrassed by me? you don't like me? get over it. I got some things to let go. so do you all. You wanna teach me boundaries? like this? great job. Keep it up. The whole community will be screwed by new year's. I need 911, I will call 911 and you'll have to get over it. Or find a new job where you can pull this kinda shit. If I'm confused, it doesn't have to be a big deal. it doesn't have to be a game. If I try to stick to basic facts, that's not lying, that's telling the truth. If I'm certain of something bigger than that, you'll be the first to know. If I keep counseling going with the same counselor, that's not dating or playing games or protecting anyone. That's trying to keep myself and the community safe with someone who knows how to help me. I have responsibilities too, and that's an important one. You don't demonize or sabotage that, or I will have to start thinking about lawyers. Cuz this shit ain't funny. Do your damn job. Mind your damn business. I hear people saying shit about my counselor, there will a lawsuit. It's not your damn business. She doesn't deserve that kind of attention. I can't guarantee I won't need a hospital again. You see the chart. You see the long list of medical problems. You've got a job to do. Do it. You don't reference her outside of necessary communication, and if she needs to be contacted and she is not, there will be a lawsuit. Basic responsibility. I don't need to sign a consent form if I'm hallucinating and talking about harming people. There's laws about that. Don't pretend you don't know these things. And if I request a consent form and it's not provided, there will be a lawsuit. I know a few big words. I prefer not to use them. Do your damn job and keep your damn mouth shut. Some people know how to do that. You don't sabotage me and I won't sabotage you. It's not funny. Her name and what she does is only relevant as it pertains to the immediate facts. She is not a gossip column for you. I hear about it again, I will take action. I will name names. Not to the hospital, since y'all don't have the decency to control yourselves. You can talk about me. You don't talk about her. Not anymore. That's my boundary. You got something you need to say to her, her contact information is online. it's not that hard. It's called phone, email, fax. You got something to work out with her, make an appointment. She charges by the hour to deal with this shit. Like anyone else. Do your damn job, follow the law, keep your damn mouths shut. She does not need to be discussed in the hospital setting. She does need to be informed. You will work with her when necessary, or SCDHEC or whatever the health part is of that organization is now will be informed with details and names. It's not that hard. You wanna keep your job? follow the law. If I don't need to talk about her, then you don't either. If I hear about it, there will be trouble. I guarantee it. You sabotage her, I hear about it, there will trouble. I guarantee it. Get over yourselves. Do your damn job. This isn't about her. You don't like it? You better get used to it. Right the hell now. Not tomorrow. Not the next day. Right now. No more warnings. You don't talk about her, my orientation, or dehumanize me, then I won't have anything to say.
Further Thought on Labs
This medical stuff is absolutely insane on its own. I've got more lab tests and doctors and visits, and my life revolves around this stuff. Keytones, CO2, it doesn't even have to be labels or drugs, just the basic lab results are something of their own. Eating regularly, using the CPAP, avoiding dust... talking just isn't easy any way you put it. My energy is not that high. Maybe it looks it. It's not.
This morning it's my liver that I'm noticing. Right foot is still a little funky. I've been told I'm focusing on the problems. The CPAP and the eating and the natural stuff. That's the solutions. The meds... the antidepressants help. Seroquel seems to help. I've got to be careful with my body. I still don't see how Gateway or Phoenix is going to help with this. There's a lot of medical that neither place would ever address.
The doctors are enough to keep up with. I don't know exactly how the VNS change factors in. if it even played much of a role. I wasn't happy. that's what it's there for. But I'm not changing it again.
Low CO2 at ER
At the ER I had low CO2 levels. that doesn't happen unless you're not getting enough oxygen. I've had trouble using the CPAP machine. Hallucinations can result from low oxygen levels. Or not eating enough. Whatever the initial cause was, I think the low CO2 levels mean more then the rest of what they found. I've gotten a lot of heat for the CPAP machine. Hospitals don't like it. Centers don't like it. It takes maintenance, it is loud, it is messy with the cables and tubes. I wasn't using it enough. the losses of consciousness, the hallucinations... I need to eat more and to use the CPAP more. My body's not that strong.
Bubble Boy
So here's something strange. Honestly, I don't feel like I've put a huge amount of conscious thought into this VNS device. It's one of those things that I don't feel I should try to understand that much, and it seems strange to me that people would want to know unless they have to. But the device is quite peculiar, and unfortunately by now I've had so many doctors, I was rather preferring to resign myself to being managed rather than actually managing all this.
Yet, in 2020, I made that decision to try being more natural. I've questioned that decision every single day. First it was no more Clozaril. Then it was the CPAP I started using less. Now it's the VNS. Now I'm having to use the CPAP again. Decrease one medication or intervention, back to another.
The neurologist no more a fan of the VNS decision than the psychiatrist about the Clozaril. At least I avoided feeling the need to threaten a lawsuit. My popularity among the doctors has plummeted.
It was foolish to think that I could make these changes and not attract attention. The more quietly I try to live, the more attention I seem to attract. I can't hide in the shadows forever, but how someone this medically complex lives a quiet life in the community while remaining in contact with other people seems to be beyond anyone's understanding on this earth.
I had struggled so much that I wanted to help other people understand. Then I face all the problems, and it seems like I'll be spending the rest of my life working them out.
I have collected many letters along the way. Medical terminology. I'm so tired of thinking about it. Where do you start with that many problems? I'm giving "strange" a new definition every day.
The VNS was turned down in frequency on February 25th. If the neurologist could have seemed more hesitant to do so I'm not sure how. Damn thing was making talking and swallowing difficult, and when you feel like you're drowning in saliva then you know you have a problem or two.
I've noticed a few things. First, these weird sensations in my head. at times the right side of my head throbs some down the temple, but more often the left side. then there's this isolated sensation that feels like the left hemisphere or right hemisphere pulsing. I don't even know the terminology for these sensations, but they can be quite distinct. Knowing that this device is used more for seizures then mental health is not particularly alarming to me, but I feel very aware of that fact and how much I use electronic devices and have sensitivity to loud noises or bright lights. I went from being numb and completely regulated to all sorts of weird feelings.
I would have rather left the journaling to the doctors but given how much this takes out of my life and how uncommon my life is, what can you do other than write about it and hope that somehow someone learns something. And I'd rather not spend the remainder of my life as a specimen. It's taken so much of my time.
I want so much to write about normal stuff and then end up doing nothing because my life is anything but normal. The amount of resentment in my heart... then they're like oh but you're strong! and I'm like, screw that. I'd like some new emotions please. But that's not how it works. I can't journal what I don't experience, can't talk about what I don't experience, can't do what isn't related to my biology or experiences. Then I'm looking for the cans. Today I can feel chest pain. swelling in my feet and they seem harder to move. Blood pressure has been funky.
When the VNS was first turned down, I had to remember how to breathe more naturally. There were times I stopped breathing. The dust allergy seems the least of it but it's easier to focus on that then the weird stuff that comes up with the VNS. It's truly quite disturbing. But I can't ignore it. Not when 911 becomes involved. Not when your social circle is limited to medical personnel. There's not enough denial in the world to hold that together.