Another "fun" tidbit.

I talked to Planned Parenthood for a vasectomy. In this area, they quoted it at $600.

Okay...

A few weeks elapse. I make an appointment. They see I need to see a doctor first. The estimate for that visit is $1782.

I did call them. They said they call back, but never did. I cancelled my appointment today.

I can't believe that a vasectomy is not fully covered by the state.

"What? You don't want to make children? How dare you?" says the patriarchal asshole.

#PlannedParenthood #vasectomy #patriarchy #PatriarchalAsshole #HealthcareCosts #doctors #ADABe #AHABe

Okay, so a few days back the office of my lipid specialist at Johns Hopkins contacts me to schedule labs, and a new appointment. She says that I can schedule my appointment myself.

So I try. They ask if my appointment needs labs. I answer affirmatively. They ask if my labs have been done yet. I ask negatively. This is true. Then the system borks. I'm going to bet anything that this is because it wants me to have the tests *done* before I schedule the appointment.

Okay, so she had offered help if I cannot book the appointment myself. I tell her that I need help, and then... several days of dead air from her.

Do they realize that:

1. I have a life.

2. When I send the ball back into your court, I'm very liable to forget that there is even a ball. Chalk it up to my #ActuallyAutistic mind, or maybe my #ChemoBrain. 🤷

All Doctors Are Bastards, eventually.

All Hospitals Are Bastards, eventually.

#JohnsHopkins #appointment #ADABe #AHABe

How My Sleep Specialists Screwed Me

Good news: I solved my insomnia problem. Bad news: my sleep specialists screwed me.

This article was originally published elsewhere in November 2022. I’m republishing it here with minimal editing. I’ll note that my insomnia problem is not fully fixed. It is definitely better. I now sleep five to height hours per night instead of two to three.

Here I am again with my slogan:

ADABe: All Doctors Are Bastards, eventually.

The “eventually” part of this slogan can play out in various ways. Sometimes a doctor is genuinely good at the start, and then drops the ball later. However, sometimes, unbeknownst to you, a doctor who appears to have your best interest at heart from the start, turns out later to have been a bastard from the get go.

It is the latter case that interests me here.

See, I’ve been suffering from insomnia for years. Yes, I’ve had cancer. Yes, I’ve had chemo. Yes, I’ve had a stem cell transplant. None of this made any difference. I was suffering from insomnia before all of those events. They were not triggered by my treatment.

My case was peculiar. I can fall asleep very easily. However, when I suffered from insomnia, I’d wake up very early, and I wouldn’t be able to go back to sleep. This is the most difficult form of insomnia to treat.

Towards the start of this year, I decided that I needed medical help for my insomnia. In retrospect, what can I say about that decision other than “HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAH! You fucking idiot!”

Not one, but two sleep specialists were put onto my case. I also eventually obtained a third specialist, but she did not last very long. Now, when you go see a sleep specialist, one of the things they do tell you is to change beds if your bed is past its prime. They did tell me this, but not forcefully enough. It was the equivalent of a footnote in a pamphlet.

My first visit with a sleep specialist, a neurologist, was on February 2nd, 2022. As far as I can tell, I’ve seen my neurologist three times. She referred me to a psychologist who was also a sleep specialist, for cognitive behavioral therapy, that I’ve seen seven times. It is a bit hard to tell what is a visit and what isn’t in the way it is recorded in the patient portal. I’ve had two sleep studies. One was in a lab. The other one at home.

My third sleep specialist was a dentist. She wanted to sell me a dental appliance, but the price was steep. I had tried a dental appliance bought on Amazon before, and it did not make any difference. I doubted that her appliance would make any difference, so I pulled the plug on this. I don’t want to spend money on devices that won’t make any difference.

The bed I was sleeping on was over 40-year-old. That’s way way past its prime. Ten years is when you should start thinking about replacing your bed. My doctors knew the age of my bed. Mind you, I cannot point to my old bed as being a “bad bed.” It did not hurt me. I felt fine on it. Yet, I suppose the effect of a bed on your sleep can be subtle, and my own story here is a case in point.

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When my doctors learned that my bed was 40-year-old, what they should have done is say, “Change your bed. Sleep on a new bed for a while, and if you still have insomnia, come back.” I would have seen one sleep specialist, once. I would have changed my bed, and then my problem would be gone.

That’s not what they did. What they did was to put me through a number of tests, and have multiple neurological and psychological sessions with me.

This was all a waste that my insurance had to pay for.

The inference you should be making right this moment is that the very doctors that are supposed to care for you, instead engage in self-serving behavior that increases the cost of healthcare for everyone.

Let me remind you that we hire doctors because they are specialists. It is not my job to figure out whether my doctor is doing their job right, or not. I’m not a doctor. I’m not a specialist in health. It is not my job to second-guess my doctor. Yet, here we are!

I think doctors should be thorough in their examination of you. If you say you have a 40-year-old bed, the first thing they should do is ask you to change beds. At the same time, I recognize that mistakes can be made.

However, I’ve seen those doctors multiple times. My sleep improvement was modest at best, and at some point the bed situation should have been revisited. “Get a new bed, then we’ll talk.” They did not do this. Instead, they sold me services that I did not need!

How do I know my new bed fixed my issue? Let’s backtrack for a bit. Besides the dental appliance that I bought on Amazon, I also bought a wedge pillow. I don’t think it helped my sleep. It does help with reflux, but I’m having less and less reflux these days. The reflux was definitely a side effect of my stem cell transplant, but it seems to be dissipating.

(Funny note here: the doctor who did my transplant told me that he was on reflux medicine permanently. I’m wondering if he’s taking that needlessly now. I do know that if you take reflux medicine for a while and stop suddenly, you’re going to have rebound. So having reflux right after stopping is not a sign that you should be on it. You have to push past the rebound.)

I know my bed fixed my issue for multiple reasons. First, I did sleep in other beds recently, and I had better nights of sleep. That was my first clue. Second, as soon as I got the new bed, I managed to be able to fall back asleep in the middle of the night. That’s another clue.

Yet another clue is that when I slept away from home, or when I sleep in the new bed I have now, I’m not sleeping in a room that was optimized for sleep. See, with the psychologist I mentioned above, she did give me tips and tricks to optimize my bedroom for sleep. However, I do get better sleep now in rooms that are not optimized for sleep at all!

Oh, and I should mention that I’ve moved out of my house, and into an apartment. My wife and I have separated, and this is why I have a new bed. This is also why my bedroom is not optimized for sleep, whereas my old bedroom was.

However, the evidence that clinched it for me was last night. I went to be completely exhausted at around 8:30pm. I woke up at 11:30pm because one of my neighbors was playing music too loud. It was quiet enough though that putting in earplugs and asking Google for white noise covered it. I tossed and turned for a while, but I did go back to sleep.

This was inconceivable a few months ago. Back then, if I had been woken up by music in the middle of the night, then my night would have been over. End of story. Oftentimes, I did wake up in the middle of the night, for no reason whatsoever, and my night was over. I’d get up and work.

So, again, ADABe. All Doctors Are Bastards, eventually. This entire experience with the doctors was a complete waste of time, and of money, except maybe for my very first appointment, where my doctor should have said “Get a new bed!”

I was supposed to have another appointment with the sleep specialist who is also a neurologist, but I cancelled it. I’m tired of pissing money away.

#ADABe #AutisticWriters #beds #doctors #healthcare #HealthInsurance #insomnia #MedicalWaste #PhysicalHealth #sleep #SleepSpecialists #USHealthcare #USHealthInsurance #YourAutisticLife

https://www.yourautisticlife.com/2024/01/25/how-my-sleep-specialists-screwed-me/

Johns Hopkins: Great At Stunt Medicine, Crap At Actually Caring

Johns Hopkins has fucked up once too many.

The events depicted in this article happened in October 2022. This article was first published elsewhere. I’m republishing it here because it is important to highlight the failures of world-class hospitals at caring for their patients. The article was minimally edited for publication here.

Remember the saying?

ADABe: All Doctors Are Bastard, eventually.

I modified it from the original ADAB. I did say “eventually” originally, but I did not have it in the acronym. Now I do. I modeled it after ACAB: All Cops Are Bastards.

I say “eventually” because it is pretty much guaranteed that no matter how highly you think about your doctor now, at some point, down the road, that doctor is going to act like a bastard. The doctors I mention in this article were all hand-picked by me.

I know some doctors are going to say:

“Wait! I did not do this. You cannot blame me.”

My reply is:

“With all due respect, doctor… fuck you! Fuck you very much.”

Yes, yes, I do understand that the nurse who did not fax the thing she was supposed to fax is not the doctor. I’m not stupid. I do have two retorts to this crap objection, however.

The first retort is this one:

Christ! Why do I have to go back to the Truman years to find someone who is willing to be held accountable? 🤦 At any rate, the various individuals in the health care system, and the various health care teams, have to stop passing the damn buck to their colleagues. If you care, you do not pass the buck! Passing the buck is the antithesis of “caring.”

The second retort is this one. If you are a doctor, then you are leading a team of health care professionals. If your team does great work, you reap the benefits. If your team shits the bed, then you get the blame. That’s how it goes. Simple as that.

“My nurse did not do her work. Don’t blame me!” is not a great reply to the patient when the nurse fucks up.

So I said in my subtitle that Johns Hopkins has fucked up once too many. The latest fuck up is that I need my PCSK9 inhibitor renewed. My insurance company sent me a letter to that effect. I contacted my lipid specialist at Johns Hopkins.

I’ll be frank and say that I don’t remember who told me this exactly, but I was told that I needed a cholesterol test, and that the script would be sent to my lab. We doubled checked the name of the lab and made sure it was the lab I wanted.

I went to the lab at the time of my appointment, only to be told that they did not have the fucking script. This is not the first time this happens with Johns Hopkins. I’ve been for tests before where they did not have the script. The net impact on me is:

My oncologist is at Johns Hopkins too, but he has stopped sending scripts anywhere. I suspect it is because the people at Johns Hopkins are so incompetent that scripts cannot be sent reliably. That is, unless the script is sent within the Johns Hopkins system. So to bypass the incompetence, I get an email with the script and I have to walk it over with me.

This is the 21st century. Why on earth should I have to walk around with little fucking pieces of paper? There is a system in place to send scripts electronically. Use it!!!!

This not the first time Johns Hopkins fucks up. It fucks up not only due to scripts not being sent but due to a whole slew of other reasons:

At the same time, Johns Hopkins did save my life. I had cancer. I was almost dead from it, but they brought me back from the brink. I am grateful for this specific aspect of our relationship. That’s stunt medicine. That’s why I say Johns Hopkins is great at stunt medicine. However, I’m not grateful for the continual fuckups that keep happening under their watch.

I’m going to reuse the analogy I’ve used before: being a patient at Johns Hopkins is like being in an abusive relationship, where the abuser sometimes shows great concern for your well-being, but at other times couldn’t fucking care less. You, the patient, when you have a new issue, don’t know where to turn. Will Johns Hopkins give you the care you need, or kick you to the curb and tell you to take a hike! You just don’t know.

Since I was not able to get my lab done, I had to cancel a subsequent appointment I had with my lipid specialist. There was just no way I was going to have my lab done in time. I did tell them exactly what I need from them in the field they present to the patients when they cancel through the patient portal. Let’s see if they do read it.

If they truly care, then they will reach out to me. If they don’t care, then they will ignore me.

An update. They never read what I put in the cancellation field. I also wrote to them in a separate email on October 14th. I’ve not received a response yet.

Who is caring? Not Johns Hopkins.

What am I going to do? I’ve recontacted the office of my lipid specialist again. I also told them that I’m going to publish an article here and complain to Johns Hopkins Patient Relations Department.

Another update. I talked to the Johns Hopkins Patient Relations Department today. The lady was calm and composed, and I was too. They are going to investigate to figure out how this mess happened. That will take a while. In the more immediate future, they are going to get my script to the lab, as I requested.

#abuse #ADABe #AutisticWriters #crap #doctors #healthcare #JohnsHopkins #PatientRelations #StuntMedicine #USHealthcare #YourAutisticLife

https://www.yourautisticlife.com/2024/01/23/johns-hopkins-great-at-stunt-medicine-crap-at-actually-caring/

The USA Is Great At Stunt Medicine, Crap At Caring: Living Proof

I’m the living proof that the USA is great at stunt medicine, but absolute and utter crap at caring.

#YourAutisticLife #AutisticWriters #USHealthcare #StuntMedicine #caring #JohnsHopkins #famotidine #ADABe #cancer #ER #misdiagnosis #PhysicalHealth #MentalHealth

https://open.substack.com/pub/yourautisticlife/p/the-usa-is-great-at-stunt-medicine?r=2hhuwi&utm_campaign=post&utm_medium=web&showWelcome=true