Escaping the Cycle

Little bit of writers block this week. Just haven’t had anything noteworthy to write about.

I finished up my last Dr visit last week with my GP filling out my STD extension paperwork. Originally I was supposed to return at the end of this week, but I made the call to extend. Why?

Well. Shit still isn’t right. My pain isn’t controlled, and my gut feeling says this isn’t over by. A long shot. Earlier in the week, for what’s been excruciating pain for at least a year, finally reared it’s ugly head. Polyp. Up until last week it was hard to breathe. It was hard to talk. Every shower I took would end with me trying to blow my nose. Yes, some pus would come out. But it just wouldn’t end. Everytime Hepworth looked up in my sinuses, he called it allergies. I call bullshit.

The two sinus surgeries yielded staph Epidermidis from cultures. The past 3 years, everything Schleve cultured, staph Epidermidis. And no, not a contaminate Mr. Terra, you couldn’t have been more wrong. Pus just comes out from the left side of my face, from under my tongue, from the inside of my cheeks. Nonstop. I’d just like to point out that I WASTED 2 years of trying to get this infection figured out with him. All he did was gaslight and deflect. I find it hard to believe that almost every doctor is like this.

Which is why my team has had a “dynamic” tht I couldn’t get right. UC Health did a great job trying to sweep my shit under the world. Every doctor minus Dr. Neff, were on the bandwagon that I’m totally fine. The GP just gave up. He would argue with me all the time. With absolutely 0 fact. But I just played dumb, and played along. Hoping that eventually I would find a break and some lab would open up the gates.

It didn’t.

Even the head of immunology said I was just dehydrated. But yet all the immune labs pointed to CVID. The only thing that Mayo helped with was that. But of course they missed the tumor, and the raging infection in my face and mouth. The longer this took, the more incompetence I was surrounded by. To the point where I would just walk out of appointments. Yeah. I can make this awkward too.

Finding Sarid and Hepworth was something that needed to happen, and I’m glad it did. I was taken seriously. Real treatment plans. Getting somewhere. Fuck, anything at this point. The IVIG got me to a place where my body could actually do something. The sinus surgeries helped remove the tumor, I literally have 1 sinus left. My sphenoids. Oh. And a partial right ethmoid, but the rest have been taken out.

But I could never find a GP to help quarterback, nor an infectious disease doctor that had an attention span longer than 2 minutes. So here we are today.

The surgery in October will hopefully finally rid my body of the shit that has made a home in my face for 10+ years.

As I sat in the office of pain management, a recurring theme has continued. I keep testing negative for Dilaudid. And as of late, the dilaudid has not been doing it’s job. So maybe this is a hint. The 8mg tabs I’m getting either my body won’t break down, or something else. So as a test, I’m going to switch to my 4mg tabs for a day or two to see if that makes things better. If so, well then I think we need to switch to name brand or just give me 4mg tabs instead. Of course as I’m writing this during another sleepless night, it feels like the dilaudid is kicking in. So perhaps another day of this, and if I’m feeling the pain go down that’s what this is.

Sitting in the apartment is driving me absolutely nuts. I’ve got the worst cabin fever. We managed to get out this past weekend but Jesus did I pay for it. On the way back, we drove through a thunderstorm. Pain was through the roof. Good thing Anies drove. I would love to get out of this rotating door. Feels like I’ve been stuck in it forever.

Infectious disease Wednesday, Ketamine Thursday.