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.