Can’t Sleep AGAIN

It’s been a rough week. On all fronts. I did return to work on Tuesday, which is something I’ve been looking towards. I have a hard time staying idle. Doing, well I guess “nothing”. When we moved I setup our new Quantum fiber setup. The new apartment has Cat5e in the walls, so I put the ONU in the data closet, moved the router to the desk, and relocated the server, and NAS to the second bedroom. Added in a managed switch that’s capable of 10gb. I set everything up within 10 minutes and was done. These little projects I would find to do, I would just blow through them quickly.

Work has been great, understanding, patient, and above all else, supportive. I couldn’t ask for anything more. Everyone on the team seemed to be glad I was back. I contacted HR, and let them m is that I had returned to work, and I also co tasted Sedgewick to tell them the same. Just making sure I’m doing everything I need to do so that HR will be happy. After getting logged into everything after I somehow locked myself out (no idea), I started looking at things that needed to be done. Then of course, my Mac told me “hey idiot, it’s time to update”. An hour later, I was up and running. I was hoping for a video issue to come in, but never came. I do look forward to working those issues, they are my favorite. So the update was someone convenient.

Unfortunately I had a doctor visit with Dr Hepworth. Hepworth visits (when I go alone) my anxiety is usually uncomfortably high. In the past they have always been rushed, not very “effective”. As I got out of the Jeep, where he is usually parked, the Range Rover was no more, some new SUV I’ve never heard of. I was early anyway for the appointment, so I just checked it out. Looked neat.

For those curious https://ineosgrenadier.com/en/us/

Turning to the appointment, prior to him coming in, I wrote a very long list of things to talk about during my visit:

Hepworth Concerns

Extreme facial pain between eyes, cheeks, nose. Popping noises are heard when wife rubs face. Says she feels a lot of lumpy inflammation in my face and neck.

Continuous low grade fever that gets worse at night. Peak is anywhere between 102-103F. This has been ongoing for 3+ weeks now. Using Tylenol to help.

Sinus rinses producing yellowish brownish bloody rubber cement -like material. Constantly getting bloody noses. Bridge of nose hurts when pushed on.

Painful Cysts and inflammation in front of left ear & jawbone. I feel cysts inside my mouth and along lower lip. There is also a sinus tract that will expel foul yellowish discharge when expressed. 2 months ago Dr Lupo pulled a considerable amount of the same material out of behind both left and right ears.

2 lumps in front of chin continuously get larger. I feel inflammation all alone the underside and outside of my jawline. These lumps are also felt near my thyroid and throughout my neck.

Still continually getting sticky white discharge from mouth. Inflammation and discharge from under my tongue.

MRI indicates a lot of sinus issues. One thing the mri pointed out was a partial right ethmoidectomy, I thought we were supposed to do a total. MRI also indicates the sphenoid is now involved.

Since mold was pulled from my sinuses, would the infection that the MRI shows be considered as such? We left the moldy environment Dec 21st.

Sinus rinses seem to only help short term. Being religious 2x a day. Rinses still include Mupirocin, amphorectin, and busonide / mad rinses (2 hours after rinse)

Every MRI shows a distortion under the left portion of my jaw and tongue. This has been there since the implants.

My bloodwork specific to WBC, and CRP has a constantly been rising. I am concerned due to the fact I am still on 2g iv vancomycin twice daily, 2g iv Ceftriaxone once daily, and oral poconazole 300mg daily.

Main questions / asks to Hepworth:

Can we please intervene again with sinus surgery within a short amount of time:

– remove/open right ethmoid completely

– open up sphenoid completely

– flush / remove inflammation throughout all sinus cavities

– removal of cysts left ear/jawline

– removal of cysts left jowl

– address severe inflammation in chin

## current medications ##

Mucipirocin/Amphorectin to sinus rinse 2x day

Busonide MAD spray 2x a day

2g IV Vancomycin 2x day

2g IV Ceftriaxone daily

300mg Oral Posaconazole daily

2500 mg Tylenol daily for fevers

40mg Rosuvastatin daily

75mg clopidogrel daily

100mg Metoprolol ER daily

90mg lovenox twice daily

10mg ambien at night

4mg Dilaudid every 4 hours

5mg Valium for anxiety 2-3 times a day

60mg Cevilime 3 times a day

Pulmicort 90mcg inhaled 2x day

2ml Busonide nebulizer 2x a day

30ml Coricodin HBP 2x daily

150mg IM Ketamine

As I went through my long list of things with his MA, I could almost tell she was getting angry. For no reason. These are my concerns. This is what we have to address. After I would bring up an item she would keep asking “anything else” in a passive aggressive tone. I had to keep reminding her that this is a long list of items I want documented. It probably took 15 minutes to get through all of it, but you know what, this is MY appointment about MY concerns. I have 0 patience for his new MA, Kendall is much butter.

But then the thought hit me like a ton of bricks. How to “break the ice” with Hepworth. Spend the first 2 minutes of my appointment talking to him about his new car. When he walked in, he didn’t seem like he was in a good mood, but after we talked about his new car, he seemed to liven up a little. I know what it’s like when people don’t take interest in the things you have. He started telling me where he going to go and do “everything” with it. I think our appoints go better when we add a bit of personal stuff in. When Anies comes, she usually distracts him with 14r stuff, so I guess that’s the tactic going forward with Hepworth appointments.

After our brief talk, I immediately brought up the facial pain, sinus inflammation and facial cysts. I’m honestly tired of feeling all this. The usual endoscope procedure started. When he goes deep inside my sinuses, I’ll close my eyes, and just focus on my breathing so I don’t gag. It was different this time, as I was focused on breathing he said this time I want you to watch what’s on the monitor. As he went into the right side, the side where I though the ethmoid wasn’t completely removed, I was able to visualize all the sinus structures as he advanced the camera, he joked (you actually know this?). Although I couldn’t laugh.

As we got to the ethmoid section, I could see that it was indeed gone. The MRI showed it closed. As he pulled the endoscope out, the one thing he mentioned is that a lot of the things on the MRI may have looked closed, but it’s the extreme amount of inflammation is what’s at play here. I could feel it when he was examining the right side. Usually it’s not a right fit, because after 5 sinus surgeries, I don’t have much left back there.

Left side looked exactly the same. Inflamed as hell. Little bit of allergies, he did see the spots of blood I told him I was constantly blowing out. He believes it’s just the abundant amount of inflammation I am dealing with in my sinuses.

Then he turned his attention to my mouth. He could immediately see the swelling under my tongue, the inside of my mouth looked crayon red, and just, raw. Previously I was using a steroid dental paste when things would just hurt too much, and I brought it up. Should I start using it again? “Absolutely”. Again. My stance on steroids is stay away unless we have no other choice.

As he sat down I started to explain how I was feeling lately. The fevers that get worse at night. Also just peeing non-stop. And just feeling miserable in general. If I can sleep all night, it’s a huge benefit. He then started to offer suggestions for my sinus rinses. He was glad I upgraded to the pump style Neil Med Hydropulse Neo (shameless plug). He said that will be able to get to places where the bottles can’t. He liked the idea of how I am doing it, with the Mupirocin first, then the Amphorecin. Now that we know that all these issues have been driven by black mold.

He then went on to say that this will not be an easy recovery from a sinus perspective, but reassured me that we don’t need another sinus surgery. Which was relieving to hear. Mold loves to hide places his endoscope just can’t reach, so we will have to watch this over the span of this year if he has to intervene.

The budesonide spray that I’ve been doing, I told him it doesn’t feel like I’m getting where it needs to go, so he offered up throwing my head backwards, or doing some sort of inversion to help get it into my frontal sinuses, which does work. So that’s a plus.

Finally. My face. The cysts. The inflammation under my tongue. I straight asked him, how do we get this under control. He mentioned a new scan I’ve never heard of. It’s called a 111-Indium Tagged White Blood Cell scan. What they do is draw an enormous amount of blood out, spin the contents so that they can separate the red blood cells from the white blood cells. Once separated, they take only the white blood cells and remove them into another tube, spin again, just to make sure it’s just white blood cells, then introduce them to Indium. Which is a radioactive tracer that binds to the white blood cells.

They then introduce them back into my body, and I am scanned through the next 24 hours at certain intervals. What this will show, is the pathways the white blood cells are taken, where they are going, and essentially, what are they attacking. This is somewhat similar to a PET scan, but this is just like it says, targeted. The scan will look at my entire body, but will help direct both Dr Hepworth, and Dr Kaufman where they need to focus. I’m pretty sure my face, neck, and under my tongue will be what the result is. There has to be an explanation for what I’m feeling in my face every minute of every day. For some time, he’s believed it to be Sjögrens Syndrome, prior to starting IVIg, I was negative, I only started showing positive within the last 2 years.

The biopsies done by both Lurcott, and the guy from UC Health, didn’t show it. But the one thing of interest from Lurcotts pathology results was “Lymphocyte-predominant acinar inflammation”. Which makes me feel like the tagged WBC scan will be another piece of the missing puzzle. Every dermatology pathology report also just talked about inflammation. The only thing that makes inflammation, is either white blood cells attacking, or an auto-immune disorder. So this will definitively tell us where to go next.

Hepworth will talk to Kaufman regarding this, and get things ordered and set.

As I drove home, I got an email notification from LabCorp. Which at this point I hate looking at them. Because up until this point, my WBC, CRP, and other markers are just looking bad. At the bottom of the test results was the Vancomycin trough level. Which I expected to be where it needs to be, instead it showed the trough to be in the extremely toxic region. Wonderful. I know that I’ll get called soon my infectious disease to stop the Vancomycin, which about 15 minutes later, they did. Full stop on everything, except for the posaconazole. When I got home, I pulled my potato needle out of my chest. There was no need for it anymore, and I wanted a break from being accessed 24/7. I immediately took the hottest shower possible for the next 20 minutes.

As I got out of the shower, my phone rang again, Sarah from Infectious disease called to setup another appointment with infectious disease for another lab draw. On the results I got, again, still no posaconazole level. Once again, “test sample not prepared correctly”. This is the 5th time we’ve tried, and failed. But they are doing it correctly. It’s just LabCorp. So next draw is Thursday. She again reiterated that I am to stop Vancomycin, and I told her that I pulled my Huber needle out.

So I “got to work” around 10. Tried to reacclimate myself with everything after my Mac updated. I made sure I could log into everything and started to look at things I could help with. I waited for a video call to come in, but it never happened.

A coworker who was on call got called late, and I helped her through the issue. Only problem being, is I took my ambien at the usual time, then started helping her. I will say this, it’s extremely hard to think through the cloud that ambien makes. If you stay up long enough, things get … weird

After helping her get off the call I went to bed. I couldn’t sleep. Which is weird. I’ve been having sleepless nights again. I still constantly wake up 3-4 times a night for no understood reason. I’ve only kinda gotten used to it. The fevers have been getting worse too. I probably only got 4 hours that night. In a blind hope, I tried taking my hydroxyzine to put me back out, but I was half awake the rest of the night.

When 5am rolled around on Wednesday, that’s when shit just went south. Fast. On top of just being exhausted, fighting through the hydroxyzine, I got an email from Chime saying I got paid. The cool part about Chime is that once an ACH deposit is initiated, they give it to you right away. So I logged in to look, then noticed it was only $500.

I fucking panicked at this point. I logged into Sedgwick, and to not my surprise, the person assigned to my case never updated my STD dates, still showed 11/27/2023 to 1/2/2024. I contacted them around 12/22/2023 to inform them that we needed to push my return to 1/16/2024, and that I’ll get them updated paperwork. Which was completed 1/10/2024, along with the ADA paperwork HR needed so that I could work from home from 1/16/2024 to 1/31/2024 to allow my immune system to catch up, let my body get used to a normal schedule, and hopefully by then, the severe fatigue and exhaustion I’ve been fighting since the heart attack will be less.

So I immediately asked the Sedgwick representative why the dates weren’t updated, and more importantly, why was the STD extension paperwork not processed. I looked at the attachments and verified it’s there and has been there since 1/10/2024. I then had to send HR and my boss an email regarding this. This is the 4th time Sedgwick fucked up my claim. Knowing how Sedgwick handled this last time, this began a massive panic attack. On top of the sheer exhaustion from not sleeping the night before, and just feeling like incredible shit. I immediately took 10mg of Valium. Which that dose amount will basically just shut off the panic attack, but at the same time, make me just sleep. I messaged my boss where I was at mentally, what I found, and just told him that today was lost to Sedgwick’s continued stupidity and inability to do their jobs. The yellow jeep payment was due in 2 days, and in 3 days, 2 of the personal loans that’s been carrying will pull from my account. Which is roughly $1700. And then rent being due on 2/1. I just went into full meltdown mode. All because someone couldn’t do their fucking job.

That was my main worry. I haven’t been late with a payment in years. This is all I fucking need. So I moved the $500 from Chime, and moved the last $500 from savings over to Chase. I’ll at least be able to cover the car payment, and one of the loans. Later in the day, Klarisana texted me that the reimbursement check came, and it was available to pickup. But since I took the Valium, being exhausted, and just having one of the worst panic attacks I’ve experienced to date, I asked them if Anies could come pick it up. I was expecting a no answer, but thankfully, they replied back yes, we will be able to do that. I then texted Anies the situation, and she went and picked up the check.

It’s still not enough to cover rent, so reluctantly I had to put this months rent on the emergency credit card.

After than, an email came in from my Attorney saying that Parc finalized our statement, and should be getting a check soon. I didn’t really pay attention to what the statement said, I just looked at the final amount. I told our attorney that I will watch for something in the mail, and make sure Parc isn’t going to try 1 last attempt at getting us to sign a release.

Thursday rolled around, and an unwelcome wake up call happened that used to happen during our stay at the other apartment. I woke up to both legs locked up and in full charleyhorse mode. Fuck it hurt so much. The more you fight it, the worse it gets. So I tried calming down the best I could. It only lasted 3 minutes, vs the usual 30 minutes as before. It’s just the worst feeling in the world. Unfortunately I woke up Anies. I felt bad 🙁

After the morning routine of taking Tylenol and Dilaudid, I stumbled into the kitchen to make coffee. God I felt so tired from yesterday’s bullshit. As I checked email, to my surprise, I got yet another notification from Chime that I got paid. I logged in, and it’s the usual amount. I felt relieved. I then logged into Sedgwick and noticed that all the dates were updated, and they sent the remaining missing paycheck. I felt even better. The second email was from LabCorp. Again, I didn’t want to look, but to my surprise, my WBC dropped to 17.3, but my CRP still remains high at 40. At least I’m out of the danger of Sepsis. The Vancomycin trough has dropped to 26, which means my kidneys still haven’t given up on me yet.

I had a 9am appointment with infectious disease for you guessed it, more labs. At least they are following me closely this time. They wanted to access my port, but I told them I need a break, and just took labs from my wrist. Again, we are still holding off on vancomycin at this point, but I told them I’m done. If we need to continue more IV antibiotics, we can either do Daptomycin or Dalbavancin. Since I still don’t know why my vancomycin trough got so high since I’ve been taking it when I should. Maybe it’s just my body telling me that it’s had enough.

When I got home, I started working through a few tickets that were assigned to me. It felt great being able to no longer be idle. A video call came in, that I helped a coworker with. We were off of the call pretty quickly, not our problem, but took the opportunity to not only teach my coworker something new, but at the same time the Video guy. I was able to work the full day, knocking out old tickets. It was just a good day minus the fever and body aches.

When Friday came, again I was rudely awoken by more charleyhorses. I think it’s just my bodies way of telling me that it’s trying to fight off whatever this is. As per usual, the LabCorp email came in. WBC dropped a little to 17, CRP still 40, but the vancomycin trough has dropped to 16. Which was relieving to see. Unfortunately though, the low grade fevers are pretty constant. 99.5 to 100.4. So I guess this isn’t “over” yet. I’ll just continue to use Tylenol regularly. I logged into Chase, and the rest of the paycheck came. So I moved it to savings immediately.

The maintenance guy stopped by again with his moisture meter, the kitchen floor, and a good portion of the cabinet still showed a significant amount of moisture. so he just started removing parts of the cabinet that were showed any moisture. Most likely, they will end up replacing the entire floor in the kitchen and the padding. Floorboards, and the cabinet. Probably some of the drywall behind the fridge. At least they are staying on top of it. With it warming up, I assume they will have more time to work on this. He did run the dishwasher, but I couldn’t tell if it was still leaking or not. My shower continues to do the severe temperature swings, so the next time I see him, I’ll let him know that we will have to blow out the shower lines and remove the buildup in the lines.

This place is still 100% better than Parc, that I can assure you.

Next month is the triple paycheck between both February and March so that will be a huge help to zero out the emergency card, because bonus is coming next too. Whatever I can do to get rid of this medical debt the better. I just wish I didn’t have to spend $50,000 over the past 5 years with just medical shit. Every year I have to spend $7,000 on top of the premiums, shit just gets old. I’d love to be able to buy a house/condo/townhome soon. So we can just become financially stable.

The check from Parc came with the statement attached on Saturday, but I wanted to read and analyze it. To not my surprise, Parc is still playing games.

As I carefully read through the statement, the amount was what I expected, minus a $95 charge for broken blinds (I blame Athena for that one). When I turned my attention to the “Lease Information” section, I wasn’t surprised that it’s all wrong

The move-in date is correct, however, notice given is blank. We gave notice via our attorney’s letter on 11/28/2023.

I think it’s pretty clear in that letter.

The next thing that I noticed, was lease expires still shows 6/3/2024. Our lease, again via our attorneys letter should be 11/28/2023. I don’t need them making up the fact that we still owe them 6 months of rent which would be roughly $12,600. Again, these fucking idiots think we are that stupid. We don’t have to sign this statement, but the check that’s attached to it means that the statement is correct. Even though both Anies and I endorsed the check, we won’t deposit this until Parc fixes this specific piece.

Lastly, move out reason. Obviously they are trying to hide the fact that we moved out due to black mold exposure / with severe health complications.

So I messaged our attorney that he needs to have these 3 items fixed on the statement before we deposit the check. I’m not going to let an intentional “clerical error” fuck is down the road. Again, it’s these stupid fucking games that will only make them look worse once the personal injury portion of the lawsuit starts, I want to make sure our i’s are dotted and t’s are crossed.

We were perfect tenants, paid on time. Opened work orders correctly each time. Never caused a single problem. However from a court/jury perspective, the more stupid shit that Parc attempts to pull, will only show their negligence further.

From a health perspective, the rashes have stopped. The breathing issues have gotten less. Anies said she feels better, and loves the new place. The cats have become active again. Without getting winded when they roughhouse or play. Athena is constantly using the wheel again running on it full speed. Whereas before she would only use it when she wanted a treat. Even Venus has started to use it a little, and Hades. Of course Athena wants to show off, and kick them off the wheel. But I am really glad to see them being active again.

It’s also nice to see the weather being better here too. The past week it’s been damn cold. Averaging -20 at night and -5 during the day. Reminded me of Chicago a little.

So we will see what happens with the attorney and Parc next week if they fix their “clerical” errors. I wouldn’t put it past them to pull this shit. They know something big is coming, and anything they can do to make us look bad, they will do.

It’s just nice to feel like my life is slowly day by day returning back to “normal”. Hopefully we can resolve the facial issues, as well as getting my bloodwork to stop looking like shit. I’m just glad we all got out of there, and we are all feeling better.

I’m looking forward to 2024 with a little more positive optimism rather than expecting it to be the same shit-show it’s been since 2021.

Again I can’t thank everyone enough for all the support, and encouragement. Hopefully by summer, I’ll be feeling well enough to the point where I can actually start adventuring here in CO instead of being trapped inside, hospitalized, or having surgery.

Next week I just have labs to do on Wednesday with infectious disease, hopefully vancomycin should be cleared out by then, and hopefully my WBC/CRP drops too.