In the beginning I started out on Octagam 10%. 40g. Infusions took forever. Fastest they would let me go was 200mL/h. It was an all day affair. Sitting in the infusion center. Tick tock. 7 hours to get it done. As time progressed I started asking them to up the rate. Finally one day, one… Continue reading IVIG vs SCIG

Since the end of May I’ve been in limbo. Yes. I got the mastoidectomy. Yes. Infectious disease did their part. I’m still waiting for surgery #2 that needs to happen yesterday. At the tail end of June, I saw 2 oral surgeons who seemed reluctant that there was any need to do surgery. From what… Continue reading Limbo

I’ve spent the past month moving my website & blog. But forgot to update the blog since I took it offline. Time to brush off my html skills and write my main website since I have to occupy my mind until surgery.

Since 2015, things have just slowly deteriorated to the point of where I am at today. Last year after getting COVID, really put the pressure on. As I sat at PSL, I pled again to infectious disease to only be treated as a crazy lunatic. It’s quite sad how the American medical system treats patients… Continue reading When Does This All End?

Sorry for being off air for so long. A whirlwind of shit has come my way since the last post. I’ll post a very long and meaningful update when I have time to. I’m still here.

               SWEDISH MEDICAL CENTER                             501 EAST HAMPDEN AVENUE                             ENGLEWOOD CO  80113 PATIENT NAME:    ZOUBEK,JOHN ROBERT   REPORT#:0601-0177REPORT STATUS: Signed ATTENDING PHY:  Pazurek,Anna Maria  MD                                    OPERATIVE REPORT CC:   ROCKY MOUNTAIN EAR CENTER    Christopher M Courtney, MD    Edward J Hepworth, MD Patient Name:  ZOUBEK, JOHN ROBERT Date of Surgery:  06/01/2023 SURGEON:  James Eric Lupo, MD… Continue reading Mastoidectomy #2

Today is worse than yesterday. It’s literally 10 minutes after antibiotics and I’m just trashed. Everything hurts. Just feels like I’ve been ignored for way too long. Nobody listened. They would rather mark me off as being crazy rather than help. Or at least try to get me in the direction I need to go.… Continue reading Round 2

Well. A year later, I’m still here, and so is the infection. I feel like I’m doing the right things, saying the right things, but everything falls on deaf ears and blind eyes. Since getting the 2 cysts removed by schleve 3 weeks ago, everything has gotten worse. Where he took them out, I can… Continue reading Fight Mode

I don’t know what’s going on but things have shifted to what the fucksville again. I woke up this morning just feeling weird. Like. Really weird. I wasn’t in pain. Which was odd. I typically wake up with it. So I want used to it being gone. As the day went by, my face and… Continue reading Miserable

The last few days have been really shitty. My neck and cheeks just burn. I know it’s progress. I hurt less. I’m starting to get some energy back. It’s been a long time coming. I spent last weekend reflecting on the past and how I got to where I am today. As I flipped forward… Continue reading Struggling