Pushing for Surgery

Today I woke up late. The Meropenem schedule honestly is fucking killing me. Every 8 hours. 6am/2pm/10pm. In the past week I’ve averaged 5-6 hours of sleep per day. And it’s starting to catch up to me.

I’m. Exhausted.

After getting the last dose of Meropenem this morning in, I pulled my port needle. Looked at myself in the mirror and said “I’m done”. It’s not working. Nor is the Daptomycin. Why continue to torture my kidneys, when really it’s doing nothing.

I got to work late. Just later than I wanted. Tuesday the plumbers came and finally fixed the hot/cold shower problems. Where you’ll just be standing in the shower and BLAM, 140F water. Reminiscent of my apartment 20 years ago when your neighbor would flush the toilet. I stood in the shower today for at least 30 minutes. Since the port needle is out, I’m going to take advantage of it. Because when you’re accessed, you have to use these stupid aqua guards. That are supposed to keep the dressing dry. They never work.

Got quite a lot done at work today, left at 1:30p to get to infectious disease. The infusion nurse met me. I noticed more bags of antibiotics. That’s when I told her let’s hold off on accessing me again until I talk to Kaufman.

About 10 minutes later, Kaufman came in. I told her that the antibiotics are doing anything. I’m not feeling any different than I was last week. Maybe a little worse. I told her about my constant nose bleeds, my septum hurting. Gagging when blowing my nose.

I made her feel the cysts in my face minus gloves. I told her those dull what you’re gonna feel. She felt them all and said that there’s something definitely there, and it’s not normal. We just need to remove all this shit and I’ll get better hopefully. I just want better. Not same. Just better.

I told her I tried calling Hepworth’s office for the prelim results, of course got nothing. Thankfully she was able to look, negative for any bacteria. So I then said, why keep me going on it when surgery is the only fix. I told her I only want to use antibiotics if we need to. IV antibiotics suck.

I then told her of Hepworth’s plan, about how I’m having to wait 3 weeks for another CT when we already have a scan showing issues in the Sphenoid. Why are we just waiting 3 weeks to just expose me to more radiation. I told her “I’m tired of these constant delays, that just stretch out the inevitable”.

She agreed

She said she would contact Hepworth and discuss our conversation, and push for the surgery. I’m just done with all this. I asked her for labs, which she did no problem, and I left. Fuck I’m so tired.

I got home, finished off a project I had, closed my laptop. Took another shower. Took Dilaudid and Valium and I’m just waiting to fall asleep. I’m exhausted. I’m on empty.

At least I can go back to my original schedule. I just gotta wait to see what Kaufman/Hepworth come up with. There’s something clearly up there. I feel like shit constantly.

I’m just trying to advocate for the health care I deserve and need.