Chronic

I have been reflecting over the past 10+ years over myself and how the downward spiral began. Prior to 2008, I don’t think I had many issues outside of a few cavities and just getting bronchitis / pneumonia constantly.

My face was fine. Outside of my ears getting infections because I had to keep taking them out. But nothing that I could recall as to where I’m at now. 2008, a weird year. My the shittiest ex gf ever. I honestly just wanted to be fuck buddies or the most part. But that flipped quick when she wanted to move to a shitty worn down apartment. And I think that’s when it started to change.

I don’t specifically remember issues in the beginning, but as time moved on, she found this stray cat (looked like road kill) and just brought it home. I did notice an upstick in allergies as well as strange things starting to form on my face. But I just wrote it off as stress. We moved to a better apartment, but the issues persisted. I caught her fucking around with other pilots about 2 weeks after we moved in. The illnesses started to step their game up. More sever and longer lasting. Then the teeth shit started and continued until I removed everything in 2020, implants included.

When the lease was up on the old apartment, I made the call to live separately. At this point I was just done with it all, and I was already interested in someone else. So one Saturday came and we moved in carloads to the new place. But the weird shit didn’t stop. About 2 weeks in after moving in. I would start waking up to what felt like bug bites. But it would make my shit swell up, and it would just burn. After a constant 2 weeks goes by I managed to wake up to one of those fuckers running away from me.

I knew right away what it was. Fucking bedbug. So this means there are more of them. I took drastic measures to buy new sheets, throw out clothing and tried to clean the benat I could. Even got a vinyl cover for the mattress and taped the legs of the Bo spring so they had no way of getting to us. After 6 months, we moved across the hallway to a 2 br apartment.

Definitely needed more room for when the kids where there. But we wanted to get outta there and leave those fuckers there. By then my facial acne became systemic. Cysts everywhere. Small strange streaks were going across my legs as well as my stomach. I want gaining THAT much weight. As time went on though, my symptoms worsted again. Constantly doing levaquin and prednisone. Lung issues. Crazy rashes. Just really crazy symptoms. I wrote them off as allergies. The dental stuff kicked into high gear in 2010. Root canal after root canal until 2015. Something was just ravaging my face. Tooth by tooth. Strange sores started to appear in my mouth that I couldn’t explain. It was around this time when Emily’s Lyme started to take her over.

Same stuff for her too. Crazy rashes, bruises. Walking problems, then… it got to her brain. Thankfully she started treatment in 2016 through 2018. Some damage is done but she seems ok for the most part.

It never dawned on me to get checked. Life was too busy for me to focus on myself, and I regret that.

My final weeks at arris were more and more dr visits, and you guessed it, muscle issues. Starting to sweat all the time. Taking really weird shits. I just didn’t feel good.

When we got to Denver it seemed as though as if everything took a break, but in 2017, the swallowing issues started. Muscles were sore initially saw an ENT who said it was GERD. Did a ton of tests. No results. The acne started to come back like you wouldn’t believe. I found a dermo that would take them out, but all that would come back is inflamed cyst. No other noteable pathology. So I’m basically at a dead end. Illnesses start to come back in 2018. More root canal redos. Nothing works. Seemed like a dead end everywhere until I had to go back to my dad. Spending all that time in close contact with him knowing know what I didn’t back then, I was just setting my body up for the apocalypse.

Returned home, and 3 days later… boom septic. My body is fighting something. Durning that hospital stay they found a tumor in my left frontal sinus. But good old me put it off. 3 more hospitalizations and that’s when we learned about my CVID. But I have a feeling this isn’t it. I kept telling doctors I have an infection in my jaw and face. Nobody listened. I got yanked around from doctor to doctor that would literally rinse/repeat what everyone else was saying. Even had an immunology work up that proved this is what it is, and their diagnosis was that I was dehydrated.

Mayo finished the work up and diagnosed me. Now yet again I gotta find a dr to handle that. By mere fate in 2019, I had an appointment for another ent to work on the raging sinus infection I’ve had for at least 3 months. And to see what we could do about the tumor. They told me they also have an immunologist. Had a next day appointment, and by the end of the week they started me on ivig. But that really seemed to open Pandora’s box. Sepsis wouldn’t stop. I felt like death. But I was willing to give this time.

At this point I’ve removed 1/2 of my lower jaw’s worth of teeth thinking that the root canaled teeth were toxic at this point. 6 months go by and I start to feel better.

Implants.

Worst idea ever. Facial swelling on my lip was the first thing I noticed. Under my tongue there lumps that I can move around and you guessed it, that fucking acne is back. Not even a month after implants 1 fails. Yup. Septic. Then septic again.

Thankfully an er doc referred me to ID. Who had no fucking clue what they were treating. So they did 6 weeks of antibiotics and kicked me to the curb. A month later I feel like absolute shit. Find another ID dr to help, she gives me 6 weeks of ceftriaxone. And I started to feel better. Except now I have yet another sinus infection.

I felt some relief after surgery, but the facial swelling started to get bad. At this point in my mind… it’s the implants. Had them removed to only go septic right after, but that hospital stay was different. I was being treated as if I had munchausens and that I’m making all this up. Mind you I had a ton of sores across my neck and face and at this point in my mouth. My mloodwork looked like shit too. But again, I’m crazy.

I still was feeling a crazy amount of pain so I went back to Mayo. Wouldn’t ya know. Fucker broke his drill bit off in my jaw. Came back to co and had it removed. You guessed it septic again. I’m now just not being listened to by any doctor. My jaw is on fire now. I’m literallly eating opiates like candy just so I can make a day at work.

When 2022 hit, I could feel death coming. Every day. Each day that passed the pain would just step up. My face felt like there was something crawling in it. Strange sensations would radiate from my left ear across my forehead. Getting out of bed every day was a full reminder that I’m just going to be in pain till I fall asleep. Every infusion I did, made things worse. At this point I just feel… toxic. The red streaks that have been growing on my stomach have become intolerably itchy. New ones are starting to appear too. My misery is at the point I just want to give up. Yeah. I said it. The amount of shit that I have had to deal with my entire life is starting to break me. Yes. I thought about OD’ing on my pain meds. Several times. At this point I feel defeated. To make matters worse, my boss was retiring and I could see the bus coming.

It took everything I had to interview for other positions. I was determined to get the fuck out of where I was. Because I knew once he was gone, there would be nobody to protect me. Luckily a spot was open and I managed to make it over to my new job. It was a relief. Finally. Something positive to look forward to. But of course, that didn’t last. I found a new gp that would take a fresh look at me. With the growths all over my face, and my left ear, I begged him to order an mri of my head. There is something there. This isn’t normal.

At this point I’m going weekly to my dermatologist for kenalog injections. Every day it felt like I was losing my mind. After sitting in an MRI machine for an hour, I walked out just frantically refreshing the page where the images would be. As expected, the radiologist that always looks at my imaging put his report up. Of course nothing. I swear at this point, this guy just sees my name and just does the bare minimum. As I started to look at my imaging, I noticed my entire face was lighting up. I do mean my entire face. My cheeks, my eyes, under my tongue. The following week I had an appointment with Dr. Hepworth. At this point I’m dreading going, because I’ll just get dismissed, or have some silly thing he would say. Thankfully Anies went with.

At this point, pus is coming out from everywhere. I feel as though as if I’m starting to disappear. Prior to going, I gave him a heads up about the MRI. As he walked through the door my heart instantly went into marathon mode. It took every ounce of my being to not have a nervous breakdown. After discussing the issues, he put the gloves on and started to feel around in my mouth. Every 3 seconds I was gagging. I could feel shit coming out. That’s when the unexpected happened. Surgery. The one thing I didn’t think he would say, came right out. The strange shit that’s been behind my left ear for the past 5 years finally caught his interest. Dr. Hepworth put the pedal to the metal. Wanted me to see an ear specialist, said that I needed surgery badly. Mastoiditis. In his words, “infected fluid”. Then he talked about a second surgery where they would clean out my salivary glands. Because at this point, they aren’t working anymore.

Anytime I would eat. Instant pain. The cevelime isn’t working anymore. So. I just stopped eating. I started calling for an appointment with the new ear dr the minute I left Dr Hepworth. At this point I’m in panic mode. But yet again, a familiar pin came back. Another fucking kidney stone. And this time it hit hard and fast. As April came, it felt like I was going to die.

Between the kidney stone pain, and my face, I felt like complete shit. About a week later, just stared to feel completely worn down. Sore. Achy. And just done. As I walked into work something didn’t feel right. I told my boss I felt like shit. And I went home. I slept the whole day. I woke up with something I haven’t had in a long time. A fever. Great. Fucking pile it on. When Anies got home, she wasn’t feeling good either. We spent the whole weekend just being miserable. On Monday I took her to convenient care for a COVID test. We both felt like shit. Negative. Feeling a small bit of relief. When Tuesday came however, that disappeared. I woke up with a fever of 101. I felt horrible. I haven’t felt this bad in a long time. As we sat on the couch, we literally exchanged the thermometer back and forth. By noon I hit 103.

Panic set in again. I started to have thought issues. I started to shake. I knew what was coming. Sepsis. I fucking swear I can’t catch a break at this point. When I hit 105, I told work I was going to the ER. It felt like an eternity trying to get ready to go. The kidney stone was slowing me down. We got to PSL pretty quick. By the time we got there, I was at 106. Again, I felt like I was going to die. The staff this time were quite attentive and listened. CT confirmed a 7mm kidney stone, and my blood work proved sepsis. Immediately got fluids and vancomycin. The staff normally would have their Covid gear on, but things have relaxed. Dr came in and ordered more tests, and told me I was being admitted. At this point I felt relieved.

As I got up to my room, I still just felt like shit. Things quickly changed when the dr came into my room with full COVID gear. I knew at that moment something wasn’t right. COVID finally hit me. Dr said he was going to keep me on antibiotics, but add an antiviral because I’m so high risk. He said that infectious disease would be in to see me in the morning. That’s when it fucking dawned on me. Great. I get to see this fucking asshole who has literally been dodging me.

The next morning I woke up still feeling like shit. I didn’t want to eat. I realistically just felt like just giving up at this point. A knock at the door… I knew who it was going to be. To my surprise it was a urologist. Typical conversation about how to remove it. I told him I wanted ESWL. He then said that they couldn’t do that because the hospital didn’t have the gear. Also I’d have to wait 6 weeks after I was out of the hospital for fear that the anesthesia would cause complications with COVID. I told him to just keep me drugged.

Shortly after, ID came. At this point, I wasn’t getting any antiviral and I immediately brought it up. I voiced mg frustration to this new doctor. I told her that my immune problems need to be taken seriously. Within 30 minutes they put me on it. But of course, took me off of vancomycin. I was so fucking angry. My face did feel better after a day of it. Later in the afternoon, the respiratory issues started. It felt like my lungs were just rocks. My watch was telling me that my O2 was @ 83%. I asked for oxygen at this point. Every hour that went by, I felt worse. I started to think that by that night I’m probably gonna get out in the ICU. Thankfully it didn’t happen.

Pus was still coming out of my lip. When ID came in again, I told them I had an infection in my face. I won’t forget the look she gave me. Yep. You talked to the other asshole. I’m making all this up. Of course they didn’t listen. Gave me a tube of antibiotic ointment. Lol. I wanted to just fucking throw it at her. Great. Not being listened to. Again. Thankfully the internal doctor was listening. He talked to dr Hepworth. So he was filled in with what is going on.

By the 3rd day things started to get better. Yeah my face hurt like a motherfucker, but I could at least breathe again. I spent the next 4 weeks at home. Miserable. Thankfully work let me have time off that I didn’t have. Working from home was a godsend.

After the Covid fun, I was reminded that I still had issues going on. I woke up just absolutely nauseated. I was in so much fucking pain. But I went to work anyway. Every step I took made it worse. I made it to my desk, but probably me moving around moved the stone. I was sweating like crazy. Once again, told my boss I gotta go. Nate gave me a ride home. Every bump made things worse. Climbing up the stairs felt like it took all day. Thankfully I got an appointment at the urology place right away. April came and picked me up. Worst car ride ever.

I probably freaked her out. I kept writhing in agony. Nothing made it better. And I do mean nothing. As I got in, checked in, there was nobody in the waiting room. I dropped to the floor. The pain broke me. It felt like I was being stabbed from the inside. The dr came in and immediately said I need surgery. Great. More surgery. He left to go look at the schedule, they needed a urine sample. As I got up from the table, it felt like I got hit with a bowling ball. As I walked out to the room, I leaned up against the wall and dropped to the floor. The nurses and dr at this point are freaking out. Dr ordered toradol. I thought to myself, what the fuck is that gonna do.

I went back into the room and waited for the shot. They were going to call me an ambulance, but thankfully the toradol worked. Surgery was set for the next day. Headed to get my blood drawn and I went home and just collapsed. I was fucking done. It felt like I ran a marathon. But at least the pain was less.

Surgery was supposed to be ESWL, nope, instead they did lithotripsy. They couldn’t see the stone. Great. Woke up to a pull string hanging out. I immediately asked for fentanyl. I’m sorry but at this point, everything fucking hurt. And I do mean EVERYTHING. The stent hurt. I could feel it. I knew that the pissing fire feeling was gonna suck, and boy did it. That lasted about 3 days.

Then I had my appointments with Dr Lupo, and Hepworth. Surgery was on for may. 2 weeks went by after the stone removal. Stent removal day. I honestly didn’t know what to expect. It didn’t disappoint. Probably the most pain I have ever felt in my life. Nothing like having someone cram numbing jelly in your pisshole. Shortly after the dr came in and started the lawnmower. My god. Never again.

I somehow managed to keep getting work done at work. Probably my only saving grace. As June 6th came, so did my anxiety. The week before surgery, I probably read too much about mastoidectomies. Watched procedure videos. Just prepared myself what was to come. It only made my anxiety worse. Work moved me into an office where I could quarantine and not be near anyone. Everything is gonna be ok… until my phone rang. Hepworths surgery scheduler called me. There’s a problem. They don’t have the tool to do the surgery. Fucking great. She suggested that I delay my surgeries. I asked her how does one schedule surgery and not have the tool to do it. “You’re being disrespectful”. I about lit her the fuck up. I told her that the mastoidectomy is going to happen regardless. She then started to say that maybe I didn’t need the sialendoscopy. I just hung up on her at that point. Thanks for not doing your fucking job. This only added to my anxiety.

As I drive home, I felt as though as if I was losing my mind. Realistically I was. The stress, anxiety, and pain broke me. I drove to the nearest gas station and bought a pack of cigarettes. I didn’t care anymore. I needed something to calm me the fuck down or I was gonna fucking lose it. Anies left for yet another trip. I smoked non-stop. I missed the feeling. Yeah, I quit in 2018. But this would be just a small bump in the road.

I woke up from the mastoidectomy in an extreme haze. It felt like someone put a hole in my head. Between the nausea, and the pain, I don’t remember going home. The weeks after, we’re the absolute worst. The barometric pressure was a constant reminder that i did in fact have a hole in my head. It felt like I was in the Atlantic Ocean in a canoe during a hurricane. I couldn’t feel my left ear. It was numb. It felt alien. I could feel it with my hand, but I couldn’t feel it from my ear.

As the weeks went by, my face and tongue were the absolute worst. I was literally counting down the days till surgery.

When I woke up from surgery, Dr Hepworth told me all of my salivary glands were seized shut. In his works “concrete”. Again the unexpected came out of his mouth. Actinomycosis. He said that he would get me on antibiotics. Which of course didn’t help. In a panic I drove to Mayo. Which was absolutely no help. It was a complete waste of time. Yes. My blood work looked like shit. The MRI showed that there was still fluid in my ear. Pus was still coming from out from under my tongue. FUCK.

As I drove back, I sent Hepworth a message. I told him I wanted a picc line and iv antibiotics. As I had a follow up appointment, he sucked a huge glob of pus out of my sinuses. That felt fucking amazing. He agreed to do the picc line and ertapenem.

Of course, it took 3 weeks to get it in. I had to go to the infusion center for ceftriaxone till it was done. My picc line was put in, but it’s like Hepworths office mishandled everything. No orders. No anything. At this point I kept thinking to myself, that this isnt going to get any better.

The way he ordered the antibiotics made absolutely no sense to me, or even the pharmacy. Once a week. What the actual fuck. It’s supposed to be daily. I spent the next 4 weeks pleading my case, to which now I’m on it 3 days a week, but it doesn’t feel like it’s doing anything anymore.

He wanted me to see a new dr. An osteopath. “Western medicine is failing”. He said. Well ok I guess. I had a telehealth appointment with his NP. She was very friendly and compassionate. We spent probably an hour and a half going over everything. She asked a lot of good questions, honestly provabaly one of the best dr visits I had in a long time. Unfortunately his wait list is long. Soonest I could get in would be next year in January. I fucking hate waiting. Out of all of this, I have lost my patience. I had 2 follow up appointments with dr Lupo. I kept stressing to him that my mouth still hurts as well as my ear. He recommended I stay on iv antibiotics for awhile. It was a relief to hear. My main worry is that we aren’t going to treat this properly. And I’m going to go back the other way.

Finally I had my appointment with dr Naylor. Just like his NP, he had a pretty good idea. We didn’t spend too much time on how I got there, it was where do we go from here. I did tell him about an experiment I did the previous week where I took doxycycline, rifampin, and dapsone together for 3 days. Jesus Christ did that make things that much worse. It’s known as the herximier effect. The basic jist is your body reacts to the drugs. I was itchy, achy, and just felt miserable. He did indicate that was a good experiment and that make day to what’s going on. Then I had a kinesic functional test done. I laid down on the table next to a ton of glass vials. I really had no idea what was going on at all. His PA came in and held her hand on my left leg while he shuffled back in forth taking these vials, doing strange motions. This went on for about 15 minutes. I just felt awkward. I guess that this is something completely new to me so I just laid there. Right before I got up, he asked what antibiotic I was on. Waved it over me, then collected vials and I walked back to his desk.

As we sat down, he thanked me for allowing him to do the test. He said that it was probably pretty awkward, but will ultimately put me on the right path. He then started to really push the Lyme narrative, the co-infections. He strongly believes that I am infected with borrelia, bartonella, and babeosis. These are the 3 players in the realm of Lyme. I started to fell like, just maybe, just maybe, we can find a resolution once in for all. My main concern to him was that I need whatever this is out of my body. I feel like the past 2 days that my body is just toxic. Everything hurts. My right side of my neck will

Freeze up and just stay locked between my shoulder and my ear. If I look to the right, it hangs, then I gotta move my head back to the left. That’s when it hurts the most.

I took muscle relaxers today. They do help but Jesus am I just out of it. Between that, the dilaudid I’m gonna be a zombie.