Not Your Typical Monday

Woke up this morning at 6:30 to a crapton of pain again. This has worn out it’s welcome. 100%.

As I tried to get everything under control, I started writing a list of things for Dr Lupo to discuss today. Lupo is the one who owns the ear issues. He’s the one that did the two previous mastoidectomies. He’s a very patient, and understand Dr that treats you like you’re a family member. My left surgery spot just hurts. It’s murder again. Feels like absolute jello back there. And now more pus is coming out of my sinuses.

Then more things got added to the list. Ketamine. I haven’t heard anything from either Klarisana or Prism, so let’s add that to the list of shit to do today. Increasing pain, let’s get an appointment with my GP. It’s been 2 months. Might as well throw that on the pile.

Got the reminder email to order my monthly Xolair shot. Got that done in 10 minutes. It would be so much easier to just order it through the CVS app. And I could take back the 15 minutes it takes to call in.

9am. The barrage of calls start. I need to get this ketamine thing done. There seems to be a log jam. I called prism first, and nope, no fax, no nothing from Klarisana. I asked for the fax number, and it’s completely different to what they gave me last time. Welp there’s the problem. Called Klarisana, gave them the new fax number, and the girl said it would take 10 minutes. No big deal. I’ll just start getting things off of the list.

Next was GP. After about 200 rings, the usual front desk girl picks up and knows it’s me. She said that I’ve had about an inch worth ofedical records come streaming through over the past 2 weeks and was wondering why I haven’t came for an appointment. We both laughed to which I replied “I guess I was really busy”. I got a same day appointment @ 4pm. I let her know that I need to get some antibiotics from Dr. Courtney, catch him up on the past 3 weeks, and that we need to work on my STD paperwork so I can extend disability hopefully one last time.

Great. That’s off of the list. NEXT.

10am After a quick shower, and eating my medication, I was off to see Dr Lupo @ 10:55. His office is literally next door to both the main hospital, and the OR floor. So it’s an ok place for me to be in should we gotta do something 🙂

I ran a few errands before I left, before the Dilaudid was going to start working. Did a bunch of returns for things, picked up a warming mask for my face (sort of excited to try it tonight), throw trash out and pickup coffee on the way there.

I’m always early. I do pride myself as I’m almost always early for every appointment I gotta be at. It’s a respect thing. And one thing I hate most is wasted time. Just makes it easier for everyone. I got checked in, and sat down in Lupo’s office. But I brought a special guest with me, culture sticks. I want to see if he will help remove one of these lumps in my ear and if we can capture something.

I was called back by the audiologist. Sat in the sound room. Gave her a rundown of what my hearing and balance has been like. I already admitted to her that it’s worse. Right side test went fine. But when we switched to the right. Low and high end hearing is gone. Introducing noise made it worse. Then the dreaded part of the next test. The bone conduction one. She started at the highs and worked her way down. Again. High end sucks. Mid range I was ok. So now the low test. It’s more concussive. And it sits right on the surgery spot. Here goes nothing. The minute the low started to vibrate I stood right up and took the headset off. “NOPE NOPE NOPE”. It felt like I was getting jackhammered. But with sound waves that anyone else wouldn’t have a problem with.

Next was the pressure test. Which historically doesn’t go well. But this time to my surprise was fine, it hurt but not as bad.

I got into the room with the world’s worst chair and sat and waited for his MA to come in. I gave her the quick cliff notes on what’s going on. Medication updates. And she went to get Dr Lupo.

As he walked in, he said “well if you’re here things aren’t going so good”. I replied with unfortunately. I’m used to this at this point. We discussed the CT results from last week, the strange pains/sensations I’m feeling. What infectious disease is doing for me, which was good to talk bout because we are closer to figuring out what bacteria is doing this.

As he got up to look at my ears I said oh, btw I brought a culture stick. Can we try bursting one of these cysts and capture it? Absolutely. He ran off to get a few things but came back shortly after. This cyst was really deep. When he went into it, nothing came out. I was pissed. I then said here let me push it out for you, and I did manage to get a good amount to come out. So we got that on the qtip and in the specimen carrier. Ordered pathology for aerobic, anaerobic, and fungal extended keep. So they will hold on to the cultures for 30 days to see if/what grows. I’m hoping it does. I need a small win. He then prescribed tobradex drops to try. I have some at home, I’ll do it when I get home.

As I walked back to the car, I called Prism to see where we were at with the Ketamine paperwork, to my surprise, they received it, already had it approved/signed by Dr. Mike, and it will be sent back to Klarisana by the end of today.

Perfect. 2/5 things done. And it’s only noon.

On the way back home, I finished the errands I started. 4/5 things done.

Got home, and fed the angry natives and opened up mail. After that, I put the drops in my ear and I thought I stuck a screwdriver in my ear. It was the worst. But. That’s how my body reacts when it gets help. I left the drops sit for about 15 minutes, while I talked with Immunoe and the IVIG stuff for next time. Made sure all the right orders are in. Cool. Just 1 thing left to do.

4pm my appointment with Dr. Courtney. Got there early and waited to be called back. But when I turned the corner, there it is again, the ol balance issues again. Swell.

After the MA took vitals, CT results, and a brief overview of what the visit is about, she left to get Dr. Courtney.

As he walked through, he said that my folder has gotten “a little bigger” since we last spoke. He wasn’t exaggerating, had to be almost 2 inches thick. I went over the past 3 weeks. The ID appointments, the port, the IVIG, the continued pain in my ear and face. And lastly the ketamine plan.

He was fine with all of it. He’s just writing everything down furiously. We then talked about my 2nd surgery and the delays. I got upset while talking about it, hard not to.

Unfortunately the last thing I brought with was the paperwork for STD. Unfortunately with everything going on, I don’t feel comfortable, or safe enough to come back to work as-is. My current return to work is 8/31, but with everything, the best choice is to push it a few more weeks.

This will ultimately buy time for me to try to get a routine under control. Get a second dose of dalbavancin, get my second IVIG therapy out of the way so I can switch to home care, see if I can convince Hepworth I move the surgery up to yesterday (yes I’m bringing my angry polish if with), she’s just as frustrated with all this as I am. Maybe even moreso. Lastly, it will give me time to get through the 3 week ketamine course. 60mg every other day for 3 weeks, then monthly after.

I absolutely DO NOT WANT TO COMMIT CAREER SUICIDE WHILE BEING TREATED WITH KETMINE. All it would take is a mistake and life’s difficulty goes up x1000. I’m not risking that for anything.

So hopefully tomorrow Klarisana will call me to schedule the series of injections, April will drive me to/from. And just hope that something sooner happens with Hepworth and the surgery that NEEDS to happen.

I left Dr Courtney’s office with the documents, and a new tentative return date of 9/25, but that’s worst case scenario.

Hopefully the culture taken at Lupos office will give more insight. And I hope I can persuade Kaufmann to do another round of dalbavancin if Hepworth won’t move. It’s working, slowly but surely. My face feels smaller, and the lumps in the front of my chin have started to shrink. So that tells me I’m on the right path for once in a very long while.

If the universe falls into place sooner than 9/25, I can get back to whatever “normal” is supposed to be.