Drowning in the Desert

In early '22 I established primary Care with El Rio to investigate a constellation of troubling symptoms that included intense fatigue, chronic constipation, unexplained weight loss, migrating cystic nodules, disturbances of consciousness, a new intolerance of sunlight and temperature changes, swollen lymph nodes and more.

While El Rios initial response was robust, it began to taper off and had slowed to a stop a year later even as increasingly out of range lab values came to light and instances of bacterial and fungal infections became more frequent. .

Specialist referrals have turned up new findings but not conclusive answers and have prompted no further investigation by my primary care providers. While some of these symptoms, when viewed with the out of range lab values, Reese questions of a small number of troubling possibilities the line with some of the more worrying heritable health problems that run in my family, I couldn't help but notice that the initially robust testing effort was slowly being phased out in favor of reassurances that these were "still normal", only to find them documented quite differently in my visit summaries than the way I had explained them.

And sure, perhaps one or two out of range lab values would have been unreasonable for me to worry about, but some had become chronic and but were slipping through the cracks of an over worked staff at my pcp's office. they pointed out that my c-reactive protein was four times higher than normal range suggesting a pretty serious inflammatory process but I never heard anything about it after that. My cholesterol, which had plummeted to a total of 98 - 22 points below normal and well below the rest of my mostly hypertensive family. Normally I wouldn't look a gift horse in the mouth like that but I could not think of a single healthy habit that could have justified a lipid profile like that of a vegan Olympic athlete. I was seeing spikes in my white blood cells that affected a different one with each complete blood count. First the neutrophils were too high. Then the monocytes. Then the basophils and finally, the eosinophils, which, unlike the others, have remained elevated almost perpetually, even amid oral, topical and local injections of steroids that accompanied the antibiotics I was being prescribed for increasing instances of skin infections that weren't receiving laboratory diagnoses, though at the time, I felt thst was better than nothing.

As such, my dermatologist stood out as the most proactive among all my providers, and explored some presumptive diagnoses to varied results. The resemblance of my lesions to those produced by hidrsdenitis suppurativa informed a decision to have me trial an empirical trio of rifampin, doxycycline and topical clindamycin, which produced dramamtic but unsustained improvements. My dermatologist had not realized that by early 2023, El Rio was only seeing me when I requested, and that nobody had scheduled me for routine liver monitoring as is standard practice for long-term rifampin use. After approximately a year on these medications systemic symptoms of fatigue and worsening digestive issues prompted my dermatologist to instruct me to stop the rifampin and continue the other two, which I did.

A year on antibiotics had been hard on my body and my immune system, now lacking key components, like any sort of bacterial balance, quickly began to buckle under the added strain of some new developments in my living situation. Our neighborhood well was crumbling in disrepair, with plastic delivery pipes that run beneath our street breaking open. At the same time, our antiquated filtration and pump system was failing, leading to the discovery of arsenic levels over twice the EPA limit and a very empty repair fund that our well treasurer had been misappropriating and failing to collect overdue payments on. The entire system needed replacing and there was no money to even replace the basic maintenance components, so over the course of 2023, we experienced 120 days with significant interruptions to running water access. At least half of them were limited to periods of 1-2 hours without water but the rest varied - 4 hours here, into the afternoon there and on a couple occasions, well into the next day.

For a household that raises egg producers and cares for a number of pet dogs and stray cats, the sanitation issues were immediate and numerous, compounded by a leach field problem with our septic tank that led to 11 overflow events throughout 2023,, another 9 in 2024 and so far, 3 this year.

By mid 2023, everyone in the house was having new health problems. I had begun coughing up thick, ropey wads of what I can only describe as very well cooked linguine. I never seen anything like it but suddenly I was getting a couple of them a week.

El Rio suggested I increase my water intake - which I was all about but, you know - water shortage - and quit smoking. I managed to cut that down by about 3/4 from a pack to a quarter pack a day but the expectorations persisted. I requested screenings for strains of mold and bacteria that are strongly associated with backyard bird-raising but they went unfulfilled

My wife had started experiencing her own health problems, with the migraines she had all of her life starting to stretch out for days on end and a puzzling bout of septic pneumonia that came out of nowhere and put her in the ICU for several days.

In mid august 2023, one such migraine persisted for 3 weeks before culminating in a seizure that almost killed her before my eyes.

She arrived at the hospital just in time to be intubated bedside and was in an induced coma by the time I arrived. She had suffered a subarachnoid hemorrhage. Her brain was bleeding in three places, they told me, as I sat there half listening, watching her chest rise and fall with the mechanical whir of the ventilator.

The coming weeks would be the hardest of my life. Complex decisions about her medical care had to be made daily. I was awake 72 hours, asleep for three, back up for another 48 in the first week, spending my nights reading about subarachnoid hemorrhage at her bedside, putting the actions of her doctors under a microscope and pointing out every little thing that was different from the standard of care that I was familiarizing myself with. It ended up being the right thing to do as I headed off a couple of potentially harmful approaches and unnecessary exploratory procedures but it would have been better handled by somebody a little more rested and less combative than I was. My refusal to budge on their desire to do an exploratory digital subtraction angiogram, citing a laundry list of contraindications she had, resulted in a fight with her entire stroke team which they started in her room while she was groaning with a headache, shouting at me over the bed. Security was called in. Five doctors laid into me with fear tactics about how important it was to perform this - but not right away -later that week so that it could be done in the gallery that they rented out so students could watch.

"She could have bleeds that we can't see under the other ones". They said.

" And if they're still concealed by the other ones, it means they're smaller than the other ones and since you're not rushing to fix those, and can't answer any of my questions, the answer is no. If you want to do some traditional imaging and show me that the other bleeds are still active or worsening, then we'll talk".

Of course they didn't want to do that so instead they waited for me to leave the hospital and tried to clean her consent just a day or two after she had finally begun to speak. I arrived the next morning to find them already prepping her for the procedure and she couldn't tell me what they were prepping her for, what risks they told her were involved or where she was.

Later that afternoon, because they had removed and replaced her catheter while she had an active e coli infection, she developed a fever and her heart rate fell to 40. If I hadn't stopped it, she would have been in a gallery in that condition, with a camera in her femoral artery while they pumped contrast into her brain so the students could learn how to do an archaic imaging procedure who's necessity is already in question in mainstream neurology circles, pioneered by the same neurologist who is credited with pioneering the practice of lobotomies.

With their performance canceled, Banner had no use for us anymore. They discharged her to St Mary's and conveniently forgot to include her imaging or any indication in her transfer paperwork that her leads were still active.

She was there 3 days before her hyponatremia which was misattributed to over consumption of water resulted in a seizure and subsequently, another big fight between me and more doctors, though this time it was at least productive as they were coming from a place of a lack of necessary information rather than ulterior motives. We got things straightened out and a neurologist and nephrologist were promptly added to her team. In the end, both the doctors impression of her had been and my own were wrong. She wasn't drinking too much water, nor was it attributable to the two most complex causes of it that I had seized on in my reading, but I had been right to point it out nonetheless.

It boiled down to her being a hypotensive and them having her on a cardiac diet - conventional wisdom for post-stroke care because conventionally, a lot of fat out of shape guys have strokes and that's the diet they need. It's just not the best fix for everybody. I started feeding her added salt and her headaches improved despite our discovery, when the neurologist I had demanded came onto the scene via a video conference, that all three bleeds were still active and banner hadn't said a goddamn word about it. Assholes.

My health problems had been on hold and thankfully, the adrenaline from those 4 weeks kept them to a dull whine in the background.

By the end of 2023, I was finally starting to take stock of my own situation. I had lost another 15 lb during the ordeal. Bringing the grand total to 65 lb down since 2021.

I felt a disconnection from everything. The ropes that were tied to all my anchors had been cut. Earlier that year I lost the most beloved dog I've ever had. My business partner and best friend, Bodhi. I'd already been sick for a year and a half when he started having trouble breathing and being out of work for so long, for the first time, I couldn't afford to just tell the vet to do whatever was necessary. In a whirlwind of just a few short weeks that I probably dragged out a week longer than I should have, he was gone. Lil's stroke happened a couple months later. Neither my family nor Lil's had followed along with the dense material I was soaking up that was informing my decision making about her care and instead of seeing me desperately trying to keep an opportunistic and entitled faculty of a teaching hospital from risking her life unnecessarily in procedures that were more for their benefit than hers, they saw an underslept, antagonistic menace picking fights. Her brother questionedy mental stability and flirted with the idea of a restraining order to bar me from our own house out of concern for his parents who live with us. My own brother took me aside and asked if I was using drugsm My friends stopped calling. My wife had woken up with the conversationality of a shy 8yr old. My rock Bodhi, was a box of ashes on my mantle next to his favorite tennis ball, my business had officially gone under and my parents had become frightened of me. By later October, I had settled in to a new, more secluded life, with my priorities refocused unactively caring for my wife as opposed to guarding her. About a week before halloween, as I sat at the table refilling her prescription organizer as I did every week, I heard a familiar name on the news. My in-laws are always watching Fox News so I was confused as to why my little town of Lewiston Maine might come up. I didn't have very high hopes considering thepit of negativity and performative outrage that is Fox News, but I wasn't prepared for what I heard next, and it was by no means the kind of news that changes based on the partisan spin a network puts on it - a gunman has walked into the bowling alley where I had about half of my toddler era birthday parties and opened fire , killing over a dozen children and adults. He then fled the scene and re-engaged with patrons at the bar I used to play pool at as a teenager, back when getting a beer was an intricate web of bank-heist level logistics, cover stories and fake IDs.

When the night was over, 18 people had lost their lives.

Suffice to say - f*** 2023 and the whore it rode in on.

I had gotten the Mayo clinic invovled after the incident at St Mary's, and though my concerns about the other two hospitals were validated - both by Mayo clinic's intervention in response to my recounting of the events, and more directly in a conversation I had with one of their specialists who was somewhat impressed that id cobbled together a functional understanding of her stroke - enough to advocate effectively anyway, on a GED and a prayer, but infinitely moreso with the real badass in the room - Lilette - who was already back to many of the things she loved, including tending to a backyard flock of a hundred birds that Id almost gotten rid of due to having no idea who was going to take care of them when she got home.

it was nice to feel vindicated but a lot of the damage to my family relationships was already done, and while things are better now, they're not like they were before. I'm not sure they ever will be. To be clear, it wasn't the fact that I fought with the doctors. Everyone sees why I had to do that now.

It was the fact that keeping up with what they were doing wrong and being the only one pointing it out left zero effort for me to apply to anything else and the huge argument with the doctors where they had brought security to the room hoping to antagonize me enough to lose my control, had taken a lot out of me. the questions are families were asking me felt like challenges to decisions that I was questioning myself but knew I couldn't keep flip-flopping on and the resulting turmoil would spill out in explosions of my temper. My hyper fixation on the sole issue of her care left me quite unprepared to correctly assess any other situation that interrupted it.

In one such incident I exploded on my brother and said some of the most horrific things I've ever said in my entire life. We didn't speak from September to Thanksgiving.

When a family member who practices medicine weighed in on a couple of my health problems that I'd asked for their impression of around mid December, indicating that they believed I had a helminthic infection, I was still seeing everything through the lens of Lil's situation.

So while there was ample evidence that a parasite was actually the most likely cause of this constellation of symptoms I've been suffering, including the basis of my family members impression - a pretty umistakable filarial larvae in a short closeup video of some abnormal stool, my approach to addressing it might have benefitted from thinking about how I was going to come off to my doctor.

I don't know how much good that would have actually done considering how much evidence they continue to ignore but suffice to say, I was definitely in the kind of state that is conducive to people momentarily losing their grip on reality. I don't resent my doctor for entertaining the misdiagnosis I got from the hospital - but by April, I had a new diagnosis, a coherent explanation as to how I may have gotten a parasite, a lengthy, detailed breakdown of the criteria for the delusional disorder I've been diagnosed with at the hospital demonstrating that I showed none of the criteria and the person who diagnosed it was wholly unqualified to even consider it. I'd spent 20 minutes in an emergency room at the start of January which I had gone to because of a staph infection and asked for an infectious disease referral because of what my family member had said.. my own PCP told me I had to make an appointment if I wanted any testing and I was still waiting for that appointment when one of my skin infections got pretty bad.

To be clear, I didn't go to the hospital for parasite testing or for parasite treatment. I in fact already knew that the hospital offered neither because I called local facilities when I first found out that my doctor was going to make me wait a month to even address it. But I thought since I had a reason to be there, maybe the doctor might look at this skin infection that was not responding to antibiotics and see reason in giving me a permission slip to have this looked at from a different perspective.

It didn't quite work out that way. Instead, at The mention of a parasitic infection and a desire for an infectious disease referral, all concerned about my staph infection went out the window. And I found myself Fielding bizarre questions and soaking up insulting comments from this doctor who I would later learn, was tired of driving to 4 different emergency rooms across town every week for a paycheck and wanted some upward mobility. He saw in my situation an opportunity to reframe my chief complaint as something that would be more lucrative for the hospital, which according to the reviews by employees from glassdoor, is the only way to get a raise at a for-profit hospital like this one. It backfired on him as he's now under investigation for the incident but the damage he did to my medical record is ongoing.

El Rio Community Health has pursued his diagnosis relentlessly, hounding me with phone calls from their behavioral health experts who want to treat me for a psychiatric disorder that every psychiatrist I have spoken to about it has declined to treat citing a complete lack of diagnostic criteria and lack of relevance backgrounds in the provider who diagnosed it in the first place.

The thing is, when you go to a hospital with a parasitic infection and it's not killing you at that moment, they don't treat it. They don't even run tests to confirm it. They just tell you to go follow up with your primary care provider.

My primary care provider was refusing to include a formal diagnosis of an actual parasitic infection made two days after the hospital diagnosis in my medical record. She was refusing to order confirmatory testing. She was refusing to refer me to a specialist. She was ignoring my messages. When I complained or got frustrated, she was forwarding those messages to El Rio leadership who in turn we're sending me certified mail threat letters morning me to stop looking for a doctor who was willing to help me with this and consolidate all of my care through my disinterested El Rio primary care provider or face potential disenrollment from services and a report to my insurance company alleging that I am acting against medical advice which would leave me with a bill that I could not possibly afford if they rejected the claims based on that.

In april, after I'd been left waiting 3 weeks for the results of a test I had requested back in January when the microbiologist at a lab that my friend works at did a Gram stain of my sputum and found a parasite egg in it, was ordered incorrectly and never performed.

I brought the microscope slide from the test my friend's coworker had done and offered it to my doctor who refused to take it and refuse to examine photographs that I had taken of the contents of it, citing that she didn't have a microscope and that she wouldn't know what to look for, as if I was asking her to personally examine it and not forward it to somebody who does this for a living. When she refused to do that, I said well why don't you just order me the same test and we'll see if the same findings are there.

She pretended that she wasn't aware if there was a way to just get sputum gram stained - which is weird because it's the first thing that a microbiologist at a med lab suggested we do. But since I've been persistent, by March she finally agreed to it... Except that she botched the test order. Despite having watched me cough it up myself, she indicated on the test order that the source of the material was from my nasopharynx and not my upper respiratory tract. The sample was rejected before ever being processed and she refused to order a repeat of the test so I filed a complaints and she fired a shot back with a title 36 application for a court order to have me involuntarily evaluated and treated for the psychiatric disorder that they had not yet proven that I had and had already been invalidated by a new diagnosis.

I was barely keeping everything together at home, there weren't enough hours in the day to care for everybody and still meet my basic minimum standard of self care, and they wanted to sedate me with antipsychotics for a disorder that they are required to perform a grueling and exhaustive workout for natural explanations before ever considering.

And since I trusted a specialist I've worked with for 3 years more than I trusted a doctor from an emergency room who barely had hair on his chin and was frankly kind of an asshole, they decided that they were going to get some help from the local government to push me along.

I arrived at my evaluation armed to the teeth with reference letters, test results, Medical history, the works.

Didn't need any of it. I talked to two psychiatrists for 20 minutes, touched on a couple of the patently bogus claims in the application my doctor had filed and they wrapped it up early, giving me their condolences for the mistake and wishing me luck. Case dismissed.

My doctor dropped me from her patient list, and I was assigned a new Doctor who, in the spirit of continuity, ignored the next diagnosis I got, this time from a doctor who had 25 years more experienced than he, and was backed by images of cystic nodules that had developed on my internal organs. That same doctor would later deactivate my entire patient portal cutting me off from access to my medical records and my ability to advocate for myself as I saw it a specialist who would honor the diagnosis and the accompanying referral I had gotten from the Doctor who made it.

Back in late January when that Gram stain of my sputum had been done, I had bought my own microscope and got in a crash course in microscopy from the same staff that helped with the slide preparation. If no one else is going to look for it, I wasn't just going to sit there and wait. And I was making progress. My new diagnosis was much more specific than the initial one of an unspecified parasite - I'd identified in the things that I was coughing up, what appear to be a cystic tapeworm larvae. I've now been diagnosed with that specifically twice. I've earned endorsements for more testing from the CDC and the health department, which my primary care provider refuses to honor. They're also upholding the revoking of my patient portal privileges which is a violation of the 21st century cares Act information blocking provision. It's illegal, even if you don't like how long the letters that your patient sends are, to decide that they just can't access their electronic health record anymore.

Earlier this year, I completed the first round of treatment that anybody has prescribed me for this. Complications during that treatment revealed something I'd started to suspect based on some of my findings and symptom overlaps - a coinfection. In addition to the tapeworm larva, I have an infection with at least one other parasitic worm not even in the same family as tapeworms. Based my imaging, it appears to be some kind of roundworm, while the AI image analysis that Google offers continues to insist that it is a fluke species. It is clearly ova and the fact that a guy with a GED who trains dogs for a living is that odds with an AI powered search engine when he pays $400 a month for health insurance specifically to not have to do shit like this that I'm not qualified for, speaks volumes about how broken our healthcare system is.

El Rio's response to my most recent letter, which was my 40th attempt to have them reactivate my patient portal so that I can access crucial records now that I have enough evidence to actually a company them to compel an infectious disease Department to take me on, was a retaliatory repeat of the same title 36 application they filed a year ago.

I learned last week that they are scrambling with their it Department to fix hundreds of patient portals for other patients who were punitively cut off from the tools to manage their health, which they did not realize was illegal and which carries a fine of up to a million dollars per instance. Thankfully, the screening agency remembered me from last time and how quickly everything was dropped. They had the good sense to call me and ask for my opinion on the application before deciding if it was even going to be submitted to a judge and they made the decision to reject it because I had infinitely more evidence than I had the last time when I beat that allegation. They knew it was a moot point.

In order to demonstrate a pattern of abuse of process by El rio, I need a copy of that new application. And since the screening agency rejected it, which I'm grateful for, and unfortunately means I'm not immediately entitled to a copy of the application itself. I'm going to need to get a court order for it.

El Rio knows I'm broke. They know I'm sick. They know I'm at my wit's end. And they're waiting me out.

I can't afford to wait any longer though. I'm 700 behind on my bills this month. My car payment is a week late. My fridge is empty. All three of my dogs are now showing symptoms of this and I can't afford to bring any of them to the vet right now. As a dog trainer, I haven't been able to return to work with knowledge of a zoonotic infection that no one is treating and even now that it has been partially treated, I'm not even able to access follow up diagnostics to ensure that the one we treated for is actually gone. I can't go into people's houses and touch their dogs with something that has all three of my dogs sick, and that's just assuming a scenario where I was actually well enough to consider doing that, which I'm not. My fatigue is bordering on narcolepsy at this point, I went to the store to get a fountain soda a couple months ago, parked the car and woke up in at 9 hours later in the parking lot of the gas station I had driven to. That was the most extreme of those incidents but I've had at least five of them all lasting multiple hours.

Lil is starting to slip back a little bit in her recovery and has decided to take a partial disability leave after going down to 24 hours a week which is putting a squeeze on our finances that we can't remedy - we've already cut just about everything and we're down to one vehicle.

Here's where you come in- I have a very strong case against El rio, and against a couple of the other doctors that have gotten on the wrong side of this. If I handle this correctly, I believe I can compel El Rio to offer me a fair, modest sum in compensation for the 16 months of income their negligence and gaslighting cost me, because I'm prepared to demonstrate why not doing so will be exponentially more expensive and could cause severe interruptions to their services.

To do this, I need notarized documents. I need to obtain court orders for documentation that's been withheld. I need to file lawsuits against the providers whose channel 36 petitions I can prove be on question we're deliberately padded with misleading and objectively false information to increase the perceived necessity of taking such measures and I need to establish Primary Care with a new doctor which means having money for co-pays because the one reason I'm still with El rio, is that I am broke and as a community health center, they don't make you pay upfront at every visit. I've stayed current with them, but only to make sure that they absolutely do not have any reasons they can point to for not keeping their obligations to me as their patient. I need to make sure that our vehicle doesn't get repossessed or we are done. We won't survive it. And I need gas in that vehicle so that I can get to my appointments.

I've made a huge headway in drafting my arguments and formal legal formats and have sent them through a paralegal AI for analysis to correct anything I got wrong and clean up the formatting since I'm learning this on the fly, but I'm making progress. This is my only shot at getting back anything I lost. Being able to restart my business. At getting my life back. And I need to pull the trigger on some of these very soon or I'm going to run out of time to pursue them. It's already hard to stay focused on planning for down the road when the car payment is late and the fridge has been empty for 4 days. I'm losing weight again, down from 235 in 2021 to 168

As of writing this.

It's hard times all around right now though. So why should you help me? To be blunt - you don't haveocu of a choice. My next stop after I exhaust this option, is the disability office, Medicaid, food stamps - anything else that will keep me alive. At everyone's expense but mine.

I'm not okay with that. I don't accept that somebody can just be left to rot with something that they treat in tents in refugee camps every single day. I'm not okay with the most fulfilling thing I've ever done with my time being taken away from me due to an illness that I likely got from my occupation in the first place. I'm not done working yet. I'm 37 and even with the setbacks this is caused, once I get on the other side of this I should still have another 25 good working years in me.

But if I don't recover what El Rio has cost me, the options that remain will never have enough wiggle room to put things back the way they were. I'll get just enough taxpayer money to survive, and I'll spend the next 40 years like that. Just taking. Hating every moment of it. Taking far more than I actually need to fix my situation, but an increments in intervals that spread it out too far to use it for that.

And that's why you should help me. Because you're not just giving me a handout. You're investing in a dedicated person with a marketable skill who is eager to share that burden with you instead of being part of it. You're investing Injustice for hundreds of other marginalized patients who've had their access to their health records restricted, who I will be advocating for in the coming proceedings. You're investing in what I once offered to my community - affordable service dogs and therapy dogs for low income families of autistic children, seniors with mobility issues, and veterans. You're investing in a long overdue of real recovery for my wife, who as we speak, is leading a class of 5th graders to the end of their year together - resenting herself the whole time for the limitations her injury has left her with but refuses to give up. You're investing in helping me write an ending to a story with the power to affect change in an increasingly hostile medical landscape.

And so I humbly ask each of you to give it some thought. Please, don't let them turn me into a burden when bringing me back to lighten the load for everyone costs a fraction of a fraction of that. My insurance covered $96,000 in claims last year that will be the taxpayers bill next year if I can't get back to earning the $400 a month I pay for insurance before it lapses and I'm forced onto government healthcare. If I can't take the responsible parties to task for leaving me sick, I'm going to stay that way and the cost of managing it entirely indirectly and without the proper follow-up is going to result in costs much larger than I'm prepared to handle and more than I think the taxpayer should be stuck paying when I'd rather be working in the first place.

Your donations will shore up a couple of overdue bills that we can't function without staying current on - namely our car payment which is currently $300 short and a week overdue, court orders for the release of documents that El Rio is illegally withholding from me, proceedings to collect the damages I'm owed under Arizona Title 36 516 addressing bad faith petitions for involuntary evaluation treatment and commitment, a civil suit for record falsification, enormous stacks of my health records that need to be distributed to various investigative agencies like the medical board, nursing board, department of health services etc, dog food, people food, gas in the car and stool exams for mv three dogs.

Assuming we can get this all covered, I don't foresee needing to increase the donation limit but please don't mistake the relatively low amount for a lack of urgency. I'm not trying to get a sent more than I actually need to get this done and will increase it if I'm forced to but I want to keep this as transparent as possible.

If you have legal or medical or veterinary expertise to donate, unused gift cards or would like to contribute to our basic need of help replace some of the consumable and specialty lab supplies that have been integral to my to ability to perform the only routine monitoring I've had, reach out to me in the contact section or check out the Amazon registry. Updates with detailed information are coming but I encourage you to always make informed decisions about your donations - not everyone who is reading me knows me or has first hand knowledge of how insufferable this situation has been. If you are considering a donation but would feel better about it if you had clarity on something or more details, please do not hesitate to ask.

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