Disgustingly Disappointed

Today. This week. Has not been good. I’ll come right out and say it. Fuck 2020. From every angle, aspect, perspective. I am coming to my end of being able to handle this. Between my health, great friends losing their mother, and you guessed it. The lovely medical community I’m surrounded by. 

Today was the day that my ENT’s office decided to make me want to discontinue my care with them. Since the surgery, I’ve continued to have facial pain, oral cysts, facial cysts, swelling, and streaking. I have constantly struggled with oral thrush on a daily basis. So yes, from my last post my ENT’s NP helped me out by giving me a dose of itraconazole to combat my black tongue. Yes. Black. As the 400mg dosing started to taper to 200mg, the thrush started to return. To which I sent the ENT’s office an update of what’s going on, which was met with 0 response. So I then emailed my immunologist about what I had said, and that the thrush is returning, all I was simply asking for was to go back on the 400mg a day for another month. It was working, why take me off. His response was that he would reach out and forward my message to the ENT’s office. 

You guessed it. No real response, “We will see you in office to re-evaluate”. Typical non answer. Main reason why I have to bring my wife. It’s literally dealing with dr. Jekyl and mr Hyde. So after my “evaluation” and my concern of the facial cysts and oral cysts, and nasal issues fell on deaf ears. He only commented on my kidney stones that it’s because of all the carbon dioxide I am being exposed to which is causing them. Complete bullshit I say. As I have been fighting a fungal infection, I read several research papers linking fungal infections which co tributes to severely increased oxalate levels. What type are my kidney stones?  Calcium Oxalate. So what I’m trying to do is hep connect the dots. Again fell on deaf ears. I’ve begun to think that this doctor really doesn’t listen. At all. 

Fast forward to last Saturday, I ran out of the itraconazole. I texted my oral surgeon who gratefully helped me with the month long 400mg treatment. No fuss. No anything. Asked me for my pharmacy and it was done. So simple.  Thinking that the antifungal was contributing to reducing the oral issues. I also ran out of the minocycline that I was getting for my facial cysts. I did request a refill as I originally got 15 days worth, but nothing happened. 

By Monday, I’m seriously starting to feel pus on the sides of my nose and the bridge of my nose is just murder to the touch. I am starting to notice the red spots started to reappear, as well as these red streaks are starting to become more prominent across my nose and cheeks. 

So I ended up calling the ENT’s nurse line and had explained the situation.  Their reply was to setup an appointment with my ENT’s NP. She helped me before, so my expectation was that I was going to continue getting help. I was then redirected to scheduling, which I got their voicemail. Which takes them at least 2 days to respond. Great. Plan B.  On Tuesday I contacted my dermo and begged him for long term minocycline, he gratefully said absolutely no problem. So I e got my 2 meds back. But by this time my face is literally fucking killing me. 

I called one of those phone a doctor apps I get access to through my insurance company. I explained to him what was going on in great detail. Before I called most of the medical symptoms were pointing g towards impetigo, which the minocycline can combat. The dr added mucipriocin. It’s a topical antibiotic for dermatological use only. Applied to the nose cheeks, as well as up the nose. CVS took too long filling it the next day, so I had them move the prescription to Walgreens. By this time my face is on fucking fire. I know the minocycline takes time to kick. When I got the meds I immediately mixed it in with my sinus rinse, and caked it everywhere. 

Relief. 

Wow. In under an hour. It was less. But now I’m starting to feel like someone is constantly poking hot needles into my nose, cheeks, and sinuses. Something is in there. Ever since I swapped to SCIg, my body has started to fight more, and consistently. 

Today couldn’t come sooner. My face, my mouth, and quite frankly me, was just wanting today to happen. Today was more dexamethasone shots in my mouth, and getting more shit removed off of my face. I did take the day off so that I could go to dr to dr to dr, however, that changed when my really good friend texted me that his mom had passed. She was fighting cancer on and off all of her life. As cancer does more than ever lately, is win. She passed this morning early. I was deeply saddened. It soured the whole day. I was sick to my stomach. My friends brother reminds me of me on several scary levels. I texted them both. I am concerned for the younger brother. 

Definitely going to do my best to help him as much as I possibly can.

So I worked today and juggled dr visits. After I left for my first appt at 7am, fuck I was tired. Got my mouth shot up, and Jesus it just feels like you are chewing an angry bee. This lasted about 2 hours. Got home shorty after to help coworkers, then 11am hit. The one appointment I wanted to be at the most. My Dermatologist is pushing 76. Nicest man I’ve ever met. I showed him the other cysts and things to be removed, I got marked up, numbed up, and I was outta there in about an hour. I was so happy I got the stitches removed from the last encounter, but got 4 of the cysts removed that have been causing me the most grief. 

I then ran to pick up the Jeep. It’s been squealing really bad when braking, second time in at the dealer for this. Picked it up, drove it home, nope. Not fixed. It’s better, not fixed. As I was sitting at home, I finally got a notification from the ENT’s NP. 

The previous night I sent her the following update:

“ 09/03/2020 at 9:48 PM

• From: John Zoubek
• To: Dr. Amazing
• RE: Nose/Face/Mouth Pain

I ended up calling into the office to get an urgent appointment setup, however, my nose, and face hurt like nothing else. From the bridge of my nose to the sides, and what feels like the sinus that is directly behind my nose. I feel fluid, and there are little bumps all over my face, with red streaks. This morning when I did my sinus rinse, a bunch of bloody/black specks came out, which has never happened before. 

I left a message for the office to schedule me from this morning, but I didnt hear back from the scheduler, so I called my GP, who prescribed me Mupirocin gel for my face and inside my nose. I took it another step and mixed it in with my sinus rinse and did that, and it feels like the fire is out for now. In the interim, my Dermatologist put me back on the Minocycline 100mg BID, and my OMFS helped me out with more itraconazole as i was starting to get thrush on my tongue again (bronwish, to black this time).

There is definitely an infection going on in my face. I feel it.

I will see you Tuesday. I’ll let you know if this gets worse.”

To which the response was:

“ Yesterday at 1:10 PM

• From: Administrative Office
• To: John Zoubek
• RE: Nose/Face/Mouth Pain

Hi John, 

Thank you for the information. Seeing as you are on treatments that we do not recommend at this time and the utilization of our care is inconsistent, I am unable to further assist you. Please make any necessary appointments with Dr. Hepworth as needed. Your appointment on Tuesday has been cancelled. 

Wishing you health, 

Dr. Whatever”

What in the actual fuck did I just read. I paused on the drive home. I pulled over, and read it again. Yup. I am reading it correctly. Thanks for this. To the already shitty day, this is even worse. Seeing as how your office took 2 days to call me back, I asked for suggestions and got 0 response. So when I get somewhat of a plan together to stop-gap me until I get evaluated, this is your pathetic response. Here’s mine. 

Fuck you you fucking prude idiot. I’ve been asking for help for a solid week and this is what you say?  Fuck you. I am literally beside myself at this point. Which makes it even better is I have to go get hydration this afternoon where she is. I will cross paths. So instead of confronting her, I went to my immunologists PA (who is super awesome). Explained to her what I did up until today, to which she was agreeing with me, I showed her the response. Her jaw hit the floor. She shook her head and re-read it out loud. “What the fuck”. Thank you. I just want to be treated as a human, and I want to be heard. That’s all. Put the ego away and help me.

She then said that this is unacceptable. She looked at my face. She saw the red spots, the streaks, the swelling, the cysts on my face, the ones in my mouth. She’s gonna get my immunologists take on what to do with ENT moving forward. I really do not want them caring for me anymore. I’ll be honest. It’s been a huge hassle dealing with them from day one. And getting them to actually do something is a completely different story. 

Fuck today. Fuck 2020. I am getting tired of fighting. Shit like today just makes me want to give up. Stop getting help. Stop taking all my meds. And just let the inevitable happen. I’m not happy anymore. I haven’t smiled in over a month. I’ve done nothing but be kind to people. I’ve bent over backwards helping others and never expecting anything in return. Karma has not been on my side. 

I’m patiently waiting, but patience is running out 🙁