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Happy Birthday, Christine! You're still alive, here in my heart! I do miss your richly faceted soul though. D— and the girls say hello, and M— drank to your memory too (even though she never met you). In fact, half the pub drank to you, but it's become a ritual over the years.

 

I'm two weeks out from having had my second Covid shot. As a close friend said to me after the event, "I'm free to play with other puppies now", and O boy does it feel good.

It feels like Spring again in so many ways. Not just in the mundane weather, because damnit we hardly had a winter and the rain has been for shit this yesr. But the asparagus is starting to show, and all sorts of summery things are going in the ground. We're having the classic Spring leek gap, but you'd hardly know it because the market tables are so bloody full we have to get really creative with the displays. I still occasionally find myself looking over my shoulder around 11, half expecting you to show up and relieve us; I always smile as I realise it's a futile (but somehow heartwarming) exercise.

I still can't type well, but I'm doing better. Of all my various technoical learning curves perhaps touch-typing has been the moist challenging. (Le LOL, I've just re-read this,decided I'm leaving in all the tyops!) It doesn't help that my keyboard is getting more arthritic, makes me wish I had some keyboard liniment. Full stops and spaces are the most challenging, and the a is just ornery and recalcitrant, and one day soon I'm going to replace it.

I'm planting flowers, or rather mre flowers. I have a fair display of paperwhite narcissus (I know they're your favourites), bit sadly the bluebells totally failed to show. That could be down to me not understanding the when and how best to plant them, or it could just be that the lack of a proper winter treated them badly. I'll try again next year.

I bought some coloured pens for letter writing today. I need to write more letters, and I though you'd especially like the pale purple (though you'd probably call it lilac or somesuch thing). I'm remembering the teasing we gave one another over ehat to call various colours. I've tried to identify the difference between teal and turquoise, really I have. That failure is mine though!

In any case, I'll write more later because it's proven to be an emotional day, and I'm going to have a sundowner with C— (who I am sure is also thinking of you!)

 

I also made a promise to write more, and not just letters! I need toi get more creative and adventurous with my writing, so I'm aiming to make some inroads into that over the next few weeks. Of course you;ll read it hear first. Badly tyoed but at least proofread in the future.

Happy Birthday, grundoon. I miss you.

My covid-19 test came back negative yesterday. Got two calls after that, one from my doc's office and one from the job employee health office. I will see my doc at 3 today and employee health just said to let them know when I was coming back to work so they could close the case.

At the moment it's more IF I come back to work.

I want to go back. These doctors are needing my OCD chart skills bad. Not to mention there was a wealth of patient maintenance that needed to be brought up to date. Like buying a really old house. I always have a little OCD but it is not obvious. I have very strong packrat genes, so my house is not hoarder bad but I have stuff. A lot of stuff. My parents' house was way worse. Grundoon had stuff too. My OCD has been focused on patient charts. The CFO of my local hospital told me a decade ago that various doctors told her that I am a brilliant diagnostician. Part of it is I approach each patient a bit the way Monk approaches a crime scene. Concentrated, focused, OCD, whatever you want to call it, I find stuff. It's not so much brilliance as dogged thoroughness. B has said I should have a career teaching how to do it, but I am not sure I can. Sigh.

Anyhow, I have other fish to fry. I want to write a book about having PANDAS but that won't get out fast enough. I need to get the word out. Because covid. That makes no sense at all, you say, you're batshit crazy. No, no, listen. There are four things that my strange illness and career have taught me and I need to transmit them to people and the medical community.

Here they are for you noders.

1. Walking pneumonia. There is an easy test. I made it up. Uh, no, use science talk. I carefully developed this test after years of study (and after I had influenza and was out two months). Check the patient's heart rate and oxygen saturation at rest. Patient a week ago: heart rate 89 and oxygen 98. Had her walk up and down the hall twice. Sit down. Heart rate now 113 and oxygen at 98. Watch the pulse ox as the person recovers. Some people will hold their oxygen level. Some won't, they will drop as the heart rate comes down. Medicare will cover oxygen if the oxygen level drops below 88%. My very basic rule is that they are off from work/school/whatever until the walking heart rate drops below 100. Normal heart rate is 70-100. If they run around like a crazy person with their heart rate up they are at risk for a secondary bacterial pneumonia and then chronic fatigue. My patients don't need a pulse ox to self test at home. All they need is a second hand. Count the heart rate at rest for 60 seconds and then after a walk. Easy peasy lemon squeezy.

2. Sometimes a patient looks and sounds batshit crazy and they are but they can still be right. B has watched me go through this. Yesterday afternoon I started crashing. Fatigue came on, feeling like I am tired through to my bone marrow. "You are relaxed." he said. He is very relieved, because he was worrying that I was batshit crazy. I was, but penicillin fixes it. When I could leave quarantine because the covid was negative, I went to his house. He thinks that this has been building up for three weeks or possibly even a couple of months. That is possible. Back in 2012 when I was tracking all the cases, some people would go six weeks to two months before the strep pneumonia would really bloom. Before that they would just be hoarse or have a little bit of a cough. Only one of them had PANDAS symptoms, besides me. Only one got hospitalized, with double pneumonia, and the conclusion was that they couldn't figure out what she had. Tests negative. However, she's had her spleen out and those people are susceptible to encapsulated bacteria. The encapsulated bacteria that I can name are staph and strep. They ruled out staph and strep pneumoniae (the bacteria) and I then reconsidered strep A, because I always want a damn explanation. Loose ends piss me off. Also she had mild proteinuria and a fever of 102 ten days before she got hospitalized and strep A can give you protein in the urine. I decided to run an ASO on the next patient, because it is specific for strep A and negative with strep pneumonia. The next patient happened to be me.

Anyhow, reading the latest PANDAS stuff makes me feel more sympathy for the docs that I was trying to get help from in 2012 and 2014. We were both right. I was right that I had strep A pneumonia and they were right that I was manic. BUT I was righter: the treatment was penicillin. B said, "I would not have believed it if I hadn't watched you go through it. Antibiotics for a mental health disorder. I can see it fixing you. It's the first time in days that you have come down." "This sucks." I say. I left my car at his house and he drove me home. After we ate, I was not safe to drive, exhausted. B says, "How many mental health disorders are caused by this?" "Dunno." I say. "But I think that we should consider running a lot more quantitative streptozyme tests when people are batshit crazy."

3. What the hell does this have to do with covid? People who didn't get hospitalized may have been sicker than doctors realize. It is sounding very much like covid 19 causes a walking pneumonia. In the bad cases they end up on a vent. One in ten severe infections triggers chronic fatigue. Fungk. If even 1% of the people who got covid 19 get chronic fatigue, that is a hell of a lot of people. We are in for a massive wave. And the medical community is really really tired and people are still refusing the vaccine. I checked a few days ago and it's still 20-30% that are saying no. This is bad. We are going to have massive amounts of chronic fatigue and/or fibromyalgia and/or neurasthenia and/or myalgic encephalomyelitis and/or we'll invent some new names.

4. Lastly the babies. If a pregnant woman has covid, the baby is at pretty high risk for PANDAS. Help the babies. Please.

So HOW, lizard, are you going to get the medical community to listen? I am working on a patient case report. My own, from 2012. I have copies of all of my medical records from 2012 and 2014, not wanting to risk the hospital "losing" them. I will need help because I don't like writing like a medical journal and I need to leave the bitchy sarcasm out. I think I can get it done in a month, which means three by my father's rule. I have two doctors in mind to proof read/help me sound like a journal. One is my doc, who I will see today. The other is a woman doctor who stood up at the hospital a few years after they fired me, saying, "Dr. Lizard was RIGHT!" She was talking about the 18 patient thing. She said that she needed time for every patient, to be thorough and do a good job and that she could not do it with 18 patients a day. She quit medicine completely and retired. I am hoping she will help. She can do medical language even if she's gagged.

Meanwhile, after crashing last night, I hoped I would sleep 7-8 hours and be in the fatigue state. Nope. Went to sleep at 9 and up at 12:45. I think that I had to write this, just in case.


If anything happens to me, you everythingians need to get the word out. Please. Many thanks.

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PS. Hey, articles on adult PANDAS! I wanna be the POSTER GIRL! Hrrr hrrr hrrr... what shall I wear?

PSS: I am much less manic/OCD/irritable/etc today. B said he'd stay in town and drive me to the appointment in the afternoon. I can only drive if I don't eat once I hit the fatigue state. Back in 2012 I went to pick up the Introverted Thinker in the town an hour south in the afternoon. I had to pull over and catnap three times on the way back. Or I would have fallen asleep on the road.
"That was scary, mom." said the Introverted Thinker.
"I know," I said. We agreed that she would find rides for anything in the afternoon or evening. I was only eating one meal a day, because I would feel like shit and then crash asleep afterwards.
I am entering the fatigue state and kinda hoping it's not chronic fatigue. About 6 months last time, or a year. I don't want to remember. A year.
Yesterday afternoon I went from not wanting to eat anything at all to food tasting wonderful. That means we've beaten out the strep A and I am on the mend. I still didn't eat any carb except kale. Kale has 6 grams of carbohydrate per cup, which is nothing. A Starbuck's 12 oz Mocha has 62. A coke has 30 or 32. Any wonder diabetes is rampant?
"I need just enough chronic fatigue to disable me," I say to B. Heh. Not funny but funny too. Ironic, since I truly love my work.


iron log V

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