Infectious Disease Anxiety

Tomorrow is a pretty big day. I get to see Kaufman again. The infectious disease Dr that basically stopped helping.

I really have a feeling they are going to try playing off what cultured, since it’s what I’ve been fucking saying the entire time. There’s a reason the Vancomycin helped. There’s a reason the Dalbavancin was helping.

BECAUSE INHAVE A STAPH INFECTION YOU FUCKING MORON

Every time I look at the culture results, I get more angry. I’m tired of doctors that gaslight, fail to communicate, fail to be a decent human being. But. This is the product of the past 4 years of literal autism, denial, misdirection, malpractice, delay of care.

I’m pretty sure Aggie is tired of hearing me say the same shit over and over. I’m honestly done talking about it. I’m tired of it being the “only” discussion I have with people. I’m fucking tired of this chronic illness. It’s worn me out. Thin. Several times.

I often use the analogy of just getting spartan kicked down the longest stairs you can imagine. I’m tired of getting back up. Every time I hit the bottom I say the same stupid shit, and it’s beyond me why do I keep getting back up. Just to wind up at this same place time after time. Surgery after surgery. It’s different this time though. I’ve lost the energy I once had. The ambition. The will. The patience. The understanding.

I often don’t say things like this, but this is the last time I hit bottom. Eventually this infection will just take me over. But I’m just going to stop trying to fight it. Just stop saying where it hurts. How it hurts. How miserable I feel. I feel this is the point my mom hit with her cancer. When she decided to just stop. I fully understand where and why and how she made this type of choice. The day she told me, it broke me.

My mother’s death lit the fuse to where I am now. Because after 2012, nothing has gone right. The struggle has become harder and harder. But I get it now. There’s only so much stupid shit someone can deal with.

When I saw Dr Dobbs, he was very clear about how there is nothing wrong with my sinuses. I would just love to be the one to say, can you stop using this shit to make excuses to NOT help me? Because had I been gullible, unable to think, I’m pretty sure the abscess that was sitting between my eyes would have spread to my brain.

I can’t be more clear about my symptoms with these “doctors”. Yet, they do everything they can to gaslight, dissuade, downplay, and just give me that stupid fucking look they always give me when it’s “sorry we don’t see anything”.

So let’s talk about the Rare Gram Positive COCCI that were seen. This was pulled straight from the abscess. Shit if you go read Hepworth’s note, almost everything taken out of me got put under a microscope. What scares me the most out here f all of this, is that I’ve been saying that I’ve had this infection for YEARS. But now I have undeniable proof.

So what’s the fix? It’s put me on 6 weeks of vancomycin. This is the same drug I would constantly be teased with during my lovely ER visits. This is the same drug that I would tell them time and time again to keep me on it because it’s working.

I’m beginning to start to become angry fast. I’m tired of nobody listening to me. I’m tired of the ignorance of others. But can you blame me?

Look at it from my perspective. I clearly have an infection in my face. I show them. I can move it around. Shit, even blown pus out mid-appointment. My phone is overwhelmed with pictures of pus. Shit coming out of my face, mouth. The weekly selfie I take that shows the progress of the swelling.

I can’t fathom the thought of what goes through these people’s heads when I tell them this stuff. Yeah. I probably do sound like someone who is having a psychotic episode. Maybe a mid-life crisis.

Yet, please tell me why Hepworth found all that shit up there when your fancy scans, show nothing. Is it just the fact that if a radiologist says nothing, why should they even look. I often read ER visit notes where some dipshit physicians asssistant (I spelled this correctly) says “I personally viewed the images”. I’m sure you did view them, but put absolutely no effort into actually stepping through slice by slice. Playing with contrast settings. Because if you did, you would’ve saw that the left side of my face DOES NOT EQUAL the right side. Because I have to be the one doing that. Reading up on reading CT/MRI imaging. Shit at this point I could become a radiologist.

It’s quite sad how much I’ve had to fucking advocate for myself since 2018. It’s just that I’ve hit that point, where I tolerate nothing anymore from these fucking idiots.

Since the surgery last Wednesday, full disclosure, it’s been painful. Bleeding constantly. Doing sinus rinses 4-5 times a day. I get white chunky shit, along with brownish/yellowish sludge out. And the best part, is the blood clots. You’d think within a week, that this would calm down “somewhat”, but it hasn’t.

The pain I was experiencing prior to the surgery in my head and face, had calmed way the fuck down. If I had to rate it, I was 15/10 constantly. It burned. It felt like something was crawling around. I would constantly just start gagging. I would spend at least 20 minutes in the shower trying to blow my nose as hard as I could. When the polyp came out, that maybe brought things down to 13/10. But the burning/crawling would never stop. Before that, with the ear stuff, I’ll be honest, I wanted to die.

I’m not kidding.

I couldn’t sleep. I couldn’t breathe. All I would hear is like someone lit off a firecracker and all I would hear was “eeEeeEeEeeEEeEeEeeEeeEeEEEee”. My skin would start producing sores, the sores would eventually just push out pus, or this sand type of shit. No joke. But don’t forget that this was on top of everything else. Doctors just gaslighting me left and right.

I’m really lucky that Dr Lupo just listened. He didn’t order a scan, or bloodwork. You could just see how bad my hearing became. I did see him this week, he makes me feel like a real patient. He was excited that the other surgery finally happened. He was even more happy that the hearing in my left ear, is back to 100%. Surprisingly enough, about 4 days after Hepworth’s surgery. The ringing stopped. The popping. The random dead silence spells that would happen.

Gone.

One of the things I’m extremely disappointed with Hepworth is, was the facial debridement didn’t happen. We talked about it endlessly. Even the wife recalls us talking about it. As I sat on the couch today, the cysts constantly remind me that they are still there. I’m at that point of who in the fuck do I have to talk to, to remove all of this shit in my face, and mouth. I’m pretty sure it’s related to the abscess. I’m almost positive. How do I know this? Because the left side of my face, and behind my ear was massively swollen. It burned. It was crawling. But since the surgery, the left side of my face, and around my left ear, the swelling has gone down significantly. I’m pretty sure that abscess was feeding all of that.

So tomorrow. Infectious Disease. Honestly at this point, I have. Nothing to lose. I’m just going to be straight to the point about growing staph for the NINTH time, here’s the culture proof, when can I expect to be put on vancomycin. Fuck, throw in gentamycin too. Might as well. I’m pretty sure she will try and say that oh tHE sUrGeRy WaS tHe oNlY sOlUtIoN.

You are wrong, have been wrong, and going forward, you’ll just have to listen to the “facts”.

I want my life back, and I’m tired of being gatekept from the things that will give it back to me.

Sorry this wasn’t a positive / nice post. I just am so tired of all of this. And I have to put it somewhere.