Can’t sleep

The worst part about all of this pain I continue to endure, is my inability to sleep. Ambien helps, but lately it’s been taking anywhere from 1-3 hours to kick in, whereas before, it was within 30 minutes.

The crazy rash that decided to show up on my chest and back almost looks like an allergic reaction, but I know it’s not. It’s just this continued infection that keeps plaguing me daily. The ketoconazole didn’t seem to be doing much for it, so I switched to a different topical antifungal last weekend, and it’s taken down the itch factor by at least half. The “breakouts” I’ve been experiencing have to be mold / fungal related. I really don’t think this is my MCAS being spun up.

So I switched to an over the counter antifungal Butafine. Yeah it’s not an “azole”, but it seems to controlling the itch factor pretty good. The overall redness and bumps have started to go down since I switched, so that’s a definite clue into that this is still fallout from the 5+ years of black mold exposure we all had to endure at Parc. The cats are definitely doing much better, Hades has grown exponentially, and he’s only a year old. Both Athena and Venus have gotten their energy back, and they don’t seem to be shedding as much as they were.

Anies hair has completely stopped falling out. I’m so happy that everyone else seems to be going back to good health, unfortunately for me, it’s not there yet. The way I measure myself as in getting “better”, is the amount of ER visits I have to endure. Which luckily, I haven’t required ANY visits to the ER since the STEMI heart attack last November. I’m definitely grateful that I haven’t needed to go, since everytime I’ve gone, I’ve never been taken seriously outside of the frequent kidney stones, and clots. Luckily I haven’t had any symptoms of either, so this is definitely a good thing.

My last IVIg session, we were unable to pull labs from my port that usually works fine, medications can go in fine, but no blood return. Only thing that means is there’s a fibrin sheath over the tube and that’s preventing return. I did see Dr. Sarid last week for my quarterly “catch up” appointment for my refills of Xolair and IVIg. I did bring it up as a concern, to which I asked him to order Soleo to administer TPA, which is a clot buster. This will add at least an hour to my next infusion, but I definitely need a working port. It’s been a godsend not needing an IV put in, over the past 6 years, I’ve been a literal pin cushion with IV’s. So hopefully the TPA does it job.

Another item I brought up to Dr. Sarid was the severe uptick in COVID infections. At work, at least 10 people have tested positive over the past 2 weeks which is concerning, so I pushed him again for an infusion of Pemgarda. Which is the new GDA approved monoclonal antibody treatment for COVID prevention. The last thing I need right now is another hospitalization with COVID, the last time was a complete shitshow. But up until this point, I’ve managed to avoid it. I am quick to mask up if I hear people coughing or sneezing constantly. A few folks did come into work sick, who were promptly told to go home. Which is nice for me, I just wish people exercised a little more common sense when it comes to coming into work sick, just stay home.

There is a local infusion pharmacy here Paragon who does have the treatment, I did send them an email yesterday looking for availability of Pemgarda, to my surprise they do have it. So it’s just a matter of getting Dr. Sarid to write the order, get the infusion scheduled at hopefully that will give me the extra protection for COVID. Yes, IVIg does have “some” antibodies for COVID, but I’d rather have this extra boost to my non-existent immune system since I have to rely on plasma donors for antibodies, they need to be getting COVID vaccines in order for that to “transfer over” to me.

From a financial aspect, I’m still being crushed by at least $1,200 a month in interest. I’m still having to juggle everything, but I’m managing to at least make payments on time, and I’m slowly chipping away at each card by $100 a payment. But at this rate, it’s gonna take me 4 years to get these cards gone. It just sucks that I have to pay the penalty for Parcs inability to fix the mold issues. I have managed to eliminate 1 credit card, which had a balance of $7,500. It’s relieving to see that balance at zero. But the other cards are still there. So it’s just been a slow process. Having to pay $500 more a month for rent really took away my ability to make any positive impact towards getting rid of the debt, but it was absolutely necessary to get us in a safe environment. Had we stayed at Parc, 3 more months of constant exposure would’ve most likely killed me. I know that for a fact.

I need to follow up with the lawyer to figure out if they are even going to do anything at this point. It’s been at least a month since I’ve heard from them, which pretty much tells me they aren’t going to help me recoup these costs, and the damage this caused. So I have no idea where that’s gonna go.

Work has been great, I’m at least able to put in full days again. Yeah there are still bad days where I gotta stay home, but at least I can think again. The brain fog that I was experiencing really made me feel disconnected from myself. So at least there is that.

3 weeks ago, I had a custom mouth guard made to stop me from biting down on my jaw. Yeah it was $175, but it’s really helped from the jaw pain perspective. Waking up every morning to feeling my heartbeat in the front part of my jaw was getting extremely hard to get moving for the day. Beforehand, I was averaging 3–4 hours RJ get the pain “controlled” enough so I could at least talk without being in an immense amount of pain, that’s the absolute worst feeling in the world.

Lately it’s just been a daily struggle balancing pain / work / home life. Chronic pain isn’t anything anyone should experience. The amount of Dilaudid I am taking would take anyone down, as for me, it enables me to move, drive a car, function. It’s absolutely not an addiction by any means, it’s just the evil reliance upon them to just get through the day. My face still continues to hurt, but it’s now coming in waves. There are periods of time where my pain is at a 0 (thanks to Ketamine), but then there are times where it goes to an 11. The hardest part is staying ahead/on top of it so it doesn’t get that high.

The work from home days help. Where I can just get up and go straight to work. Since we returned to office, it’s been a hybrid schedule of 3 days in office, 2 days at home. But unfortunately, this is changing. We will be moving to a 4/1 schedule come the end of August. It will be a difficult adjustment for me, however, work has been flexible with my time since they know what I’ve been through. Payday is tomorrow, hopefully I can just continue to chip away at this financial nightmare that Parc put me in.

I did get called today by Dr. Sarids office. They are arranging the Pemgarda infusion with Paragon. So hopefully I can get that extra protection. I love Dr. Sarid, he always goes that extra mile.

All for now.

John