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Care bare? No, Care Barrier.

My cardiologist told me to go to the Mayo Clinic six months ago.

I saw him last week and he wanted an update.

I said, “I filled out a request for a visit and my primary care referred me, but Mayo Clinic never called.”

He replies: “I will refer you.”

A week later I get a call from Mayo Clinic. But I do not have an appointment yet because

  1. They are booked out until November 18th. I am advised to “call daily” to get my appointment. They open up a week at a time, but don’t say when. A new meaning to “maybe you’ll get lucky”.
  2. They do not take my insurance and want a $5000 deposit prior to seeing me. I can fill out paperwork to ask for patient assistance. This would be the fifth hospital system in which I have filled out that paperwork. I have had to do it for four other places. The paperwork is different for each one and some even want a copy of my taxes. Do you think it’s secure? Of course it isn’t.
  3. I have to go in person to Minnesota, so add a round trip plane ticket to that $5000. They may do tests while I am there, so I don’t know how much of the $5000 I would get back. If any.

At the moment this seems insurmountable, but I will keep chipping away at all the insane barriers and paperwork. What a stupid medical system the US has, right?

We still need single payer and medicare for all. There would be one set of patient assistance papers, not five.

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nap buddies

I go out to take a nap in the yard one afternoon. I realize that I am not alone. A mother deer and two fawns are already napping under the magnolia. I reassure them that I am not a threat and lie down. I go right to sleep. They are still lying down when I fall asleep and are gone when I wake up.

For the Ragtag Daily Prompt: juvenile.

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Autoimmune OCD and my daughter shops my closet

https://www.nature.com/articles/s41398-021-01700-4

The article is a proposal for diagnostic criteria for autoimmune obsessive compulsive disorder, a relatively rare version of OCD. Important because the treatment has to include searching for infection that triggers the antibody response, which in turn attacks the brain. Antibiotics to treat a “psychiatric” disorder. Mind and body connection, right?

The ironic thing about this new proposed diagnosis is that I do not have obivious OCD in any way, shape or form. It is masked by packrat. Also, my OCD is focused. When I was working, it was focused on patients. My clinic charts were thorough, 100% of the time. I was brutally thorough and wouldn’t skip anything. The result was that I got a reputation for being an amazing diagnostician. Usually it was because I wanted ALL the puzzle pieces and the ones that don’t fit are the ones that interested me. They have to all fit. Either the patient is lying or the diagnosis is not as simple as it appears. Occam’s Razor be damned, people can have more than one illness.

In fact, an article 20 years ago looked at average patient panels and said that the average primary care patient has 4-5 chronic illnesses. Hypertension, diabetes, emphysema, tobacco overuse disorder, alcohol overuse disorder, well, yeah. And then the complex ones had 9 or more complex illnesses. You can’t see the person for one thing, because if the diabetic has a toe infection, you’d better look at their kidney function because the antibiotic dose can kill their kidneys if you don’t adjust it. So do not tell me to see the patient for one thing. Malpractice on the hoof. Completely crazy and evil that administrators tell doctors to do that.

No one looking at my house would ever think I have any OCD. I am not a hoarder (ok, books) but the packrat force is strong in me. My daughter did not inherit that gene. She is a minimalist. However, she has come to appreciate the packrat a little.

This summer she said that her purse is wearing out. As a minimalist she has one purse. I ask, “Would you like to see if I have one that you like?” It so happens that as I was trying to recover from pneumonia, a local garage sale had 20+ year old designer purses for $3 each, because the house was going on the market. Got to get rid of the stuff.

“Yes, please.” says my daughter.

I start with the weird ones that I know she will not want. I get eye rolls. But I am progressing towards the purses that are close to the one she has. At last I produce a small leather purse, the right size, in good shape, and she sits up. “Let me see that one.” Like Eeyore with his popped balloon, putting it in a jar and taking it out, she tries putting her phone and wallet in the purse and taking it out. “Yes, I like this!” She calls it “Shopping mom’s closet.” I think it is delightfully comic. The benefits of a packrat mother.

Back to the Nature article and OCD. The diagnostic criteria are gaining steam. Having watched a conference this summer about Pandas and Pans, mine is mild. Some young people have a version where killer T cells invade the brain and kill neurons. I had a moment of panic when the conference was discussing a case, but then I thought, if I had the neuron killing kind I would be dead or demented by now.

Instead, I’m just a little neurologically unusual.

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Healing

I realized I had pneumonia for the fourth time on March 20, 2021. It has been a year and five months now. I do not have an “overarching diagnosis” for why I am so vulnerable to pneumonia, though not for lack of trying. I have seen twenty specialists since 2012, including four pulmonologists.

Most specialists dismiss me as soon as their tests don’t fit me into one of their boxes.

I have one now who is not dismissing me. He referred me to the Mayo Clinic. They did not call back when I did a self referral three months ago nor when my primary care physician referred me. However, they called within a week of his referral.

Mayo Clinic called yesterday. I may need a prior authorization or something, I have a number to call today.

I am healing. I still am on oxygen for singing, flute, night and heavy exercise, but pulmonary rehabilitation is working. I have built up steadily on the treadmill for 6 weeks. I have 5-6 more. Many of the pulmonary rehabilitation people are on oxygen and will not get off oxygen, so I am an outlier here too.

I feel better than I have in seven years, since the 2014 pneumonia. I had strep A pneumonia in 2012 and 2014 and really did not fully heal after 2014. I was tired all the time. I think I went back to work too soon and just did what I could. Not returning to work is helping immensely. I can’t return anyhow, unless the Mayo Clinic or someone figures out my “overarching diagnosis” and how to make me less vulnerable to pneumonia. Seems unlikely after 19 years. My first round was influenza in 2003. Maybe choosing a different career than primary care would have made a difference, though maybe I would not have survived a pneumonia without being a primary care doctor. We aren’t supposed to treat ourselves, but if no one believes us, well, there is not much choice, is there?

The photograph is from a beach hike in November 2021.

For the Ragtag Daily Prompt: heal.

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the gang’s all here

Hale hale the gang’s all here
wrong hale, it’s a hale of a thing
but it should be hail
the same sort that falls from the sky

but on the other foot, hale hale
anyone who has survived the pandemic
is more hale than those who haven’t
so hale hale for the gang still here

For the Ragtag Daily Prompt: hale.

Let’s dance!