jon d barnett

My heart has decided to help me take my mind off of… well, my mind.

Yesterday was a real bummer. I had a routine visit with my primary care doctor and got a rude wake up call. Actually it was more like a delayed realization, which is worse than a recovered memory.

For more than a year now I’ve been struggling with shortness of breath upon exertion. As think about it, I’ve probably had some issues with this for several years, but it’s gotten much worse.

During the last quarter of 2021 I spent weeks and months on a medical merry-go-round trying to find out why I got dizzy whenever I looked up. Thanks to Medicare and my private insurance I saw waaaayyy too many specialists. A neurologist, an orthopedic doc, ophthalmologist, otolaryngologist, urologist, pain doctors and my first cardiologist.

I had so many scans and tests performed that I eventually just said Fuck It and tuned out. Life was not being kind to me. As if I didn’t have enough on my plate, I was administering chemotherapy for Cushing’s Syndrome to my dog, Bella, who died in February.

Three months later Michael and I went to Mexico to enjoy the first vacation we’ve had in more than a decade, and had an incredible time with José, a delightful young man I had met online from Colombia. We were exploring possibilities for moving and living to another country.

I told myself that I was going to choose to Live, not just spend the rest of my life being a patient.

The summer has been spent finally completing some long-overdue remodeling projects, like a new kitchen and flooring in the front rooms. Two months ago, we started painting the house. Our home has never looked better. It is the only asset we have left to help us finance our retirement… or whatever this stage of life is called.

Life was still very complex and we took some big financial risks, but there were more reasons for hope and optimism than for dread.

Life was good. And still is. But the road is never smooth for long. Our entire household was hit by COVID in July and it was not kind to me. I very nearly went to the ER with a severe cough and other symptoms. I have never fully recovered from the fatigue and lethargy, and still have a persistent dry cough. The most activity I’ve been able to muster lately is a walk around the block.

After complaining to my doctor about shortness of breath, she started digging through various reports in my medical file, while muttering to herself about her needing to get to other patients. Everything was fine. “You’re a healthy young man,” she keep telling me in her heavily accented voice. I only note the accent because I’m also growing quite deaf, and between masks and hearing aids that are past due for adjustment, it’s almost impossible for me to follow normal conversations in English these days. I imagine trying to function in a Spanish language country, as I study on Duolingo!

Apparently I wasn’t able to understand the cardiologist very well back in December, either. That, or I had simply shut down and tuned out. “The patient has a dilated cardiomyopathy with a left ventricular ejection fraction of 45%,” he reported. Only in hindsight now do I think I remember being told then that I have “heart failure.” He spent maybe five minutes with me and sent me off with a prescription. No scheduled followup, though he noted we needed one, according his notes in my chart, which I hadn’t seen until now.

As strange as it may sound, I’m thinking I must have just obliterated this news and entered a silent zone. At least that’s what my current recovered memory is telling. I took the prescribed beta blocker for a few days and quit it. I hated the way it made me feet, and a familiar aversion to prescription drugs took over.

Denial has always been an important part of my life. I swear it’s probably the reason I’m still alive and a “healthy young man”—with heart failure. But there comes a time when I have to try to find a reality I’m willing and able to face.

I resumed taking the metoprolol last night and have started taking lisinopril, an ACE inhibitor. Doc is referring me to a different cardiologist.

Just as I was preparing to finally be able to quit taking pills for HIV, thanks to newer injectible formulations of antiretrovirals, I see my pill case starting to fill up again. Words can’t do justice to the mental trauma that causes me. If I haven’t made it clear yet, I HATE prescription drugs. Doctors nearly killed me years ago by over-prescribing medications.

It’s weird that I seem to need medical crises in my life to compel me to refocus on trying to just be healthy. Since Monday I’ve been in the kitchen more than any other part of the house, preparing baba ganoush, fresh homomade salsa, tuna salad and other foods to try to lose weight and reduce uric acid.

Oh, I forgot to mention gout? My bad. Another pill for that.

I’m using a calorie app to track my diet; reduced my consumption of meat; and so far have managed to not drink bourbon for two days in a row! Yeah… that’s another problem I have. I love my fucking bourbon. Shoot me. Oh, wait, I’m killing myself, so you don’t have to shoot me.

In the midst of this mess, I’m also ignoring the “other” diagnosis regarding changes to my brain. Read my earlier posts.

Denial. I’ve got it bad again.

I’ve had one major item on my bucket list for a few years now, and it is my motivation for all other goals, like losing weight and maintaining muscle mass. If I don’t accomplish it soon, it probably ain’t gonna’ happen. I really, Really, REALLY want to visit Colombia (the country, not Columbia!) while I still can. I’m not even sure I care if I make it back or not, to be honest.

Vamos!

“You are a very healthy guy with normal cholesterol, glucose and you have tested negative for hepatitis C,” wrote my new family practice doctor in late March of this year. “Your thyroid test, B12 folic acid levels, uric acid levels, everything is normal.”

In her defense, she had not had an opportunity to review, let alone absorb, my complete medical history.

I was the picture of health, according to the routine blood labs, but I was dealing with disabling back pain much of the last two years. After heading down a couple of rabbit holes, the diagnosis was degeneration of the lumbar spine, which improved with steroid injections. By then I had lost six months of functionality, spent way too much time in bed, and (re)gained ten pounds of weight I had worked hard to lose with a Keto diet a couple of years ago.

Then I got some dizzy spells in September, which triggered another round of playing US style medical care whack-a-mole and pin the tail on the donkey. After more scans, tests and consultations with specialists than I can count, and at least two more scheduled for next week, it’s time to share an update here.

I now pretty much know, or at least think I know (perhaps?), that I apparently have some not-so-insignificant cardiovascular and neurological issues. (I learned how to write oblique sentences from reading medical reports and research papers, btw.)

In the middle of this excursion through the abusement park, I found myself detoured when I started pissing dark tea, a sure sign that the pain party hosted by the facet nerves in my lower back, had been rudely interrupted by a visit from a 5 mm kidney stone that just happened to be passing by. Add urologist to the list of specialists that were already on an increasingly crowded calendar. I’ve probably had at least a half dozen stones by now in my life—the first one occurred before I had medical insurance and getting rid of it cost me my first bankruptcy—so it only took a few minutes to agreed with the doctor that a ureteroscopy was preferable to another round of lithotripsy.

Surgery was scheduled for Tuesday this week, but I’m still waiting. During the pre-surgery testing last Friday, the anasthesiologist (have you noticed yet how many words in this post are ending in “ist”?) was unwilling to dance with me and the urologist, unless and until the cardiologist gave his blessing. The cardiologist told me he won’t sign off on any surgery involving anesthesia until after the stress test on my heart next week. On the bright side, I think I may have passed the stone over the weekend. Maybe it’s just my subconscious doing its job and trying to spite all the “ists” in my life lately?

The other good news is that if the cardiologist rules against an extremely minor and non-invasive procedure now—in terms of scalpels, at least—he’ll have a harder time arguing for any kind of heart surgery later, now won’t he? I can’t help but wonder if they think these things through sometimes.

The neurologist visit a month ago was also unfulfilling, and I was told the brain MRI show a condition that was typically caused by high blood pressure or smoking. I haven’t smoked for more than 20 years, and my blood pressure, until recently, has been low. Still, he wanted a cardiologist to sign off before he sees me again. No straight answers from the fresh out of school neuro.

Getting to this point has exhausted me, yet it is also reinvigorating me in some weird way. Finally passing a recalcitrant kidney stone can do that to a person. I guess that’s why I woke up at 3 am and decided to write this, instead of going back to sleep.

While I’m still waiting for an official diagnosis, it’s obvious that the MRI of my brain performed in September revealed apparently severe progression of small vessel disease, which will likely eventually lead to vascular dementia unless something else gets me first. According to Doctor Google, if this condition exists in the brain, it also probably affects the heart and other organs that depend on a supply of blood to function. Duh. Bonus point question: what organ does not require a blood supply?

This manifestation of “white matter” in the brain MRIs happens to many, if not most people as we age, if we get old enough, but it is, at least according to the radiologist’s report, unusually severe for someone age 65. I have had two other MRIs done in the last 15 years, so there are images to compare, though MRI techniques have vastly improved. The timeline for possible further progression is unknown, but a trusted doctor who has helped me more than any doctor I’ve seen the last 20 years assures me that I’m not yet manifesting obvious symptoms of dementia. This is a doctor who does not accept insurance (who knew such critters existed, right?) and was well worth the $90 consultation fee, since I can no longer afford the $700 annual membership fee. Seriously, she’s been a phenomenal physician to me and that’s at least partly because she doesn’t have to invest heavily in a staff or third party service just to handle insurance billing! Don’t get me started.

Yesterday, my first-ever visit to a cardiologist is resulting in…. SURPRISE… more testing, in this case a chemical stress test next week. Regardless of the results of that test, he told me that the echo cardiogram that has already been done indicates at least two concerns. One is weakness in the pumping action of my heart, 45%, which should be more like 55% or more. His second concern is that one of the walls of my heart is thinner than optimal. I’m still new to cardiology, but I have a hunch that spending weeks at a time in bed from fatigue or kidney stones or depression or whatever, doesn’t lend itself to building sturdy muscles anywhere, including my heart.

So, what does it all mean?

I don’t really know, to be honest. I only know what I’ve always known, but am re-learning (again) from a new perspective now: life is a progressive disease that started, in my case, in 1956.

I know—but am reminded, again—that everything is connected. Even the brain has a direct connection with my asshole. Well, at least to my gut, but I just wanted to say asshole somewhere this morning, because I’m wondering when someone is going to tell me my prostate isn’t so hot anymore either. I mean fuck (yeah, I wanted to say that too), I am a—formerly sexually active—gay man, after all.

In my intensive research, which means I’ve transcribed words from medical reports into Google, I’ve learned that cerebral SVD (acronyms are hot shit with medical-types) is as convoluted and confusticating as HIV and “AIDS” ever were. Or, “despite remarkable attempts to standardize the terminology, the lack of clarity even in basic concepts used in clinical and research settings remains an important issue,” as the journal Stroke puts it, but you’re welcome to google ‘cerebral small vessel disease’ for yourself if you’re into this stuff. The point is, as I see it, this condition requires a lot of cooperation between specialists who are, by the nature of our medical system, divided into groups. It’s like asking the baseball, football, basketball and track teams to figure out how to play in the same venue. Yes, I think analogously a lot. That’s not only a new way of thinking for medical practitioners, it’s an added layer of difficulty for patients who are not yet part of the design team for a system of collaborative medical care. At least not as far as I can tell so far.

Oh, speaking of HIV, add that to the mix of specialties that need to be involved in my care. Add the swimming team to the above list. The medical information available today is a tad bit more honest, or should I be generous and say transparent, than it was twenty, or even ten years ago. These neurological and cardio conditions are much more common in people with HIV, and—this is where they get points for transparency—people on HIV treatment. ARVs. AIDS drugs. When I first started blogging about my life with HIV (resistanceisfruitful.com), every possible medical problem for us was considered “HIV-related,” and the drugs were given a pass by virtue of long-term adverse effects being ignored in most of the medical literature. It was refreshing to read, “according to research, HIV, HIV treatments, and dietary and lifestyle factors can also increase your risk of cardiomyopathy,” in Healthline’s list of risk factors. (emphasis added by me)

There are also peer-reviewed journal articles that support the view that long-term use of antiretrovirals increases the risk of both heath disease and cerebral dementia. Before anyone reading this jumps my shit about denialism, let me state clearly that there is no doubt in my mind that ARVs have extended my life. There is equally very little doubt in my mind that my health would have declined even further than it has, if it were not for the fact that I managed to survive a 10-year break from ARVs. I also believe that the single greatest advancement in HIV management is due to a combination of factors, including a reduction in dosages of the drugs. I’ve lost track of what the current research is showing regarding drug interruptions.

Thirty five years after the first drug for HIV was approved, the prohibitively expensive “life-saving” treatment offered by pharmaceutical corporate greed…. er, I mean science, is also causing complications that result in a shortened lifespan from what those who have never had to cope , as well as a diminished quality of life, to say nothing about the enormous cost of additional care and treatment required deal with those complications. I would suggest that as read about new drugs to treat COVID, folks don’t lose sight of the fact that there is still a price to pay, and I’m not just talking about your Medicare Part C (or is D?) drug plan premium. At least COVID risk can be reduced with a vaccine. HIV, not so lucky.

Thank you to each and every US American taxpayer who is helping to pay for my excessive care. I have yet to find a way to get a statement from Medicare for the grand total paid to keep me alive this long. I will be amazed if I am not a million dollar patient by now.

Do I want to spend years in a “memory care facility” (aka nursing home for dementia patients)? Do I want to get back on the medical merry-go-round and spend my life attending medical appointments and taking more drugs again? Or dare I/we escape this fucked up country and travel and move around the world, or at least this hemisphere, visiting other countries and cultures and exiting the world living hopefully quickly and and as joyously as possible until I can join others in the human recycle bin?

Stay tuned.

p.s. Note that Michael has a doctor’s appointment next week too. Eeek! Fingers crossed.

p.p.s. As I re-read this post, I feel I haven’t given my medical care team the props they deserve. I am actually very impressed with the quality of care I am receiving. I see how busy the doctors, nurses and technicians are and I feel like I’m sucking more time and energy out of them than a “typical” patient might. Whatever a typical patient is. There is frustration on both sides of the stethoscope. I have been in a lot medical consultations and I can see first hand the effect the COVID pandemic has had on our care system. It is incredibly stressed and some providers have been forced to leave, simply as an act of self-preservation. Wait times have grown exponentially, forcing patients to be… patient. I try to remember to put myself in their shoes and I go out of my way to acknowledge my gratitude for them. They did not create the system we have, they were trained to adapt and work within it. The human body, mind and spirit is too complex to fit neatly into an organizational algorithm. Add to that the need to operate at a profit in a capitalist economy and you have a recipe for being able to provide the best care only to the wealthiest citizens. As much as I whine, I know I get far more care and service than a majority of people in this country. I admire, applaud and thank every person who has shared an exam room with me this year. I would not be writing this today if it was not for you.

p.p.p.s. I can’t forget the incredible pharmacists I have had the last ten years or so. As badly as my drug insurance plan would like me to switch to mail-order, I will never give up the service, the compassion and the human connections I’ve received from HyVee Pharmacy as long as I’m living in Kansas City. Thank you all!

Okay… like I have no idea what I’m doing. I just know that October 28 was supposed to be a really significant day.

I was going to find out that I was doomed to some form of dementia. The only question I had was… like, when?

How does this happen? I know Dr. Google is very flawed. And so is the orthodox medical system, at least as it is practiced in the US, based solely on my personal experience.

Disclaimer: I’m loaded. I’ve been eating cookies and drinking bourbon. I don’t even know If I am doing the right thing… whatever the fuck that is.

I’m also resuming my searches for cheap ways to get to Mexico, so just send some super-positive vibes and I’ll be happen.

Otherwise… enjoy this debut post to my new blog. I know you must be waiting…. with…. anti… ci… pation.

I had an MRI of my brain performed several days ago, September 25. I’ve been reluctant to report the results of that, because… well, because I don’t actually know yet what they mean. My primary care doc has referred me to neurology so they could “explain it to me.”

Uh oh. Red flag #1.

At least three things were found significant enough by the radiologist to include them on the written report summary:

1) Progressing severe chronic microangiopathy without acute infarct.
2) Stable ecstasia distal left vertebral artery causing mass effect upon the medulla, as described above.
3) Acute left maxillary sinusitis.

Or, as my doctor wrote, “in simpler term,”

1) You have vascular changes that are progressing, my suggestion to follow with neurology so that they can guide you as what to do.
2) Also I am concerned about stable changes in the left vertebral artry, which is pressing on to the medulla part of the brain, especially with a history that you gave that you get dizzy when you extend your neck. I want neurology to explain this to you.
3) You are found to have acute sinusitis in your left maxilla. I am sending Augmentin to you pharmacy along with probiotic.

When I called neurology, I was told they are booking new patients into January 2021! BUT… fortunately there is a new doctor in the practice who can see me October 28, if I want to see him.

Until I see the neurologist in a few weeks, I can only wait. Unless, of course, I choose to consult with Dr. Google immediately, which I have done. In a nutshell, all roads with the first finding (note the word “severe”) lead to dementia.

I’ll be honest, I’m a little scared. I think I’d rather lose an arm, a leg and both of my testicles than to lose my mind, but of course, that probably just means I haven’t advanced very far. Yet.

I have a history of neurocognitive disorders, with brain MRIs performed in 2006 and 2012. They found some mild changes, but nothing as serious as this. I’ve seen neurologists in Chicago and Kansas City. I had two neuropsych evaluations performed those years; the first one found me qualified me for disability, the second one declared I was just a tick shy of being a genius.

Hell, one HIV specialist diagnosed me with early onset HIV-associated dementia in 2004 or 05, but every other doctor I’ve seen thought he was the crazy one.

I am noticing all kinds of symptoms. Forgetfulness. Difficulty composing my thoughts. Trouble finding the right word or name. Sleeping like the dead. Depression and despair and determination to continue to resist and live the best life I possibly can. I want people to remember that I died living, not as a puddle of melted neurons and synapses.

I have been sitting on this for days, trying to decide what, if anything, to make public. I do not have a diagnosis, and perhaps all my concerns are misguided. If so, then this post will be about the waiting that is driving me crazy. But I have always made my journey with HIV and AIDS a public story. I considered blogging again, and indeed, that is what I’m doing here. Maintaining a blog is beyond my interest, if not my ability anymore.

Michael and I were in the process of planning some very significant changes in our lives and our lifestyle. We were/are planning to leave the country and finish our lives with our last big adventure being outside the USA. Now everything is on hold.

I’ve been on this ride before, and the one thing I think I know is that regardless of what I learn on the 28th, I will leave that doctor’s office with even more questions than before.

The question now being: how long is resistance fruitful? How far do I allow myself to travel down this rabbit hole?  What will I do differently, depending on what I hear from another medical specialist, in this case, the neurologist?  How long do I continue to fight for health, rather than simply keep on living until I stop?

It’s been more than four years since I’ve written a blog post, actually more like six years plus since I’ve committed more than a few hundred words to paper… er, um… digital paper that is.

It’s not so easy today to remember exactly what motivated me to start writing on my old blog, resistanceisfruitful.com. It was primarily, I think, my experience with recovery from being overwhelmed by pharmaceutical drugs. I felt I had a story to tell Whenever I have reached certain points in my life, I turn to writing. It is a sort of intermittent passion for me. A form of therapy, I suppose. I will keep that site limping along as long as I can, and will likely be referring to it frequently. For example, I’ve already written a bit about how Facebook enabled my breakup with blogging.

After this long break from blogging, I’m missing that therapy, as well as many of the many other things I’ve done in the past to cope with serious issues, like depression and other health problems.

Resistance is fruitful was a clever term I had coined, trying to capture my experience with getting anything done in this world. Whether it’s waiting for a customer service rep on the phone, a medical appointment with a specialist, or passage of legislation for equality, it seemed that persistence was required before being rewarded.

Nothing was offered freely. It seemed that it was always necessary to resist if one wanted to accomplish change.

As I continue (not always gracefully) to age, I can’t help but start to wonder if there is a point at which resistance is no longer so fruitful. Don’t misunderstand; I’m not ready to yield, but I am willing to reconsider. Resistance IS fruitful, it can also generate a lot of friction, which creates heat, which… well, draw your own picture.

Welp, that’s my excuse for changing my blog’s name, but it could just be a cop-out to my ego and vanity. I’ve spent a lifetime using my name to advance causes I believed in. It is one of the few assets I own that can’t be leveraged for debt. And while it has little-to-no monetary value, it is mine, and I’m proud of it.

Yes, yes, I know I’m using the words “I” and “me” and “mine” a lot, and I’m okay with that, because this really is all about me. This is my therapy and I’m doing it for myself. I’ve always needed some help to understand myself better, so this is my new attempt at writing more. I don’t know why anyone else would care, but I’ve strived to be an open book much of my life and we’ll see just how far I’m ready to take that philosophy going forward.

There are many things I might share and write about. Indeed, I plan to be all over the board with whatever the hell I might feel like writing about. If it’s not about me, it will be whatever I think about whatever I’m writing about. If it’s not me, it will be my opinion!

There is my porn addiction, for example. That should help my google rating.

There is my ongoing struggle with my body and my health—physical, mental and spiritual—as well as the many complications that accompany those issues. Things like self-esteem and confidence.

There is a new, yet recurring question about my mental health. Not just psychologically, but also physically. I don’t mean to be a tease, but a very recent MRI of my brain suggests at least the possibility, if not probability that one of my worst fears is waiting for me: severe cognitive decline, or maybe even dementia. I’m waiting for more information. What’s new about that?

There’s a growing sense of impending doom; not just for myself personally, but for the world and for humanity. As I write that and think that, I can’t help having flashbacks to a much younger age when I would dismiss the doomsday pronouncements of old people. Now I am one.

For now, I’m back. I don’t know for how long and I don’t know where this path will lead, but you’re welcome to follow along.

If you dare.