Category Archives: your health care dollar

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tubing

The oxygen tubing follows me everywhere.

I have a large concentrator for inside the house. There is long green tubing that I plug into the pale tubing that goes to my nose.

When I go upstairs, it’s a bit complicated. I have to unplug the pale tubing and plug the upstairs long green tubing into the downstairs long green tubing and the other end into the pale tubing. Then untangle it and I can walk around upstairs and still breathe.

To go outside, I have small cannisters. Unplug from the big concentrator, plug into the small cannister, turn the concentrator off, turn the small cannister on. Get purse and whatever the heck else I am carrying. Try to remember if the small tank is close to empty. I am carrying an extra small tank in the car. I have to turn the tank off to change the respirator, then bleed the remaining pressure, then take the respirator off. Yesterday I put the respirator on upside down. The tank hissed at me like a terrifying snake. I have warning signs in my front and back windows now: do not smoke, oxygen in use.

I took care of a man in the hospital overnight once who HAD smoked on oxygen. The ER doc called me to admit him. “He lit his oxygen on fire with a cigarrette.” “And how bad is he?” “We need to monitor his lungs.” “IF HE HAS LUNG BURNS SHIP HIM TO SEATTLE, HELLO!!!” “Well,” says the ER doc, “Ok, he’s probably fine, just burned his nose. But I am not quite comfortable sending him home.” “Oh, well, then, geez. Okay, whatever.” Wimpy ER doc. I didn’t mind once he was honest. The patient admitted that he did not want to do THAT again and yes, his nose felt pretty burned.

No smoking at my house. I am not tempted to smoke ANYTHING. When I was twelve, I smoked pretzels with my cousins and sister. They do not stay lit well but we laughed a lot. It was really fun.

I don’t have enough green tubing for the basement. So there are monsters and I don’t go there any more. No, I can use one of the portable cannisters to start a load of laundry. I am supposed to only use the portable cannisters when I leave the house. Used one yesterday to go in the front yard and garden. Stomped the spade in, levered up the grass. Wait and breathe. Wait. Ok, stomp the spade in the next place. Wait and breathe. Wait.

I get more oxygen on Wednesdays. Tomorrow. If I BEHAVE then after a month, I will get a small concentrator that I can walk around with. Then I won’t have the bloody tubing tail. I am seriously looking forward to that. I still will have the tail some of the time because the concentrator will have charging and a battery life and AUGH MY OXYGEN RAN OUT WATCH OUT WORLD I AM HYPOXIC AND DANGEROUS!

I trip over the tubing and it gets tangled and I get caught on things and it yanks at my head. My dance skills and balance are way better right now ON oxygen than OFF it. I am not nearly as neurologically whacked out when I have the oxygen. Makes me wonder… I don’t feel nearly as much OCD/ADHD/oppositional defiant. Well, ok, the oppositional defiance is rather baseline for me.

Makes me impatient, but then, whatever. I will still get stuff done. You are only as disabled as you decide to be and this will barely slow me down. Hope I get off oxygen eventually, but that is not clear. With repeat infections your lungs can scar. Hope not. Time will tell.

And donate to something to get oxygen to India. I can hardly bear to look at the news about it. I felt so awful with just mild hypoxic, that went undiagnosed for 5 weeks. Dying of suffocation is not fun. Donate.

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chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


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The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

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I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

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bravely venturing out on oxygen

So I did go do three whole small errands, one of which was lunch, on the oxygen.

Being on oxygen at home is rather like being married to an octopus. It follows me everywhere, gets caught on stuff and wants me to pay attention. When I go upstairs I have to detach tubing and attach an additional segment. Plus it can tangle. Right now I don’t have it over my ears because they get sore. I found two grabby hair clips and my oxygen tubing is clipped into twisted braids.

It’s also like being one of those really long dinosaurs. You have to pay attention to the tail. I have three floors, so I need a third set of the tubing for the basement. Currently I am just not going there.

I felt so good after the first night on oxygen, that I wore bright colors. Happy colors.

Though I am not normal on oxygen. I have this octopus/tail thing and I still can’t lift much more than the little oxygen tank and my purse and I still can’t go faster than stupidly slow up stairs without my chest hurting. However, before my chest was hurting any time I sat or stood up. Now it only hurts if I push my limits. Me, push limits? How could ANYONE ever think I would do that….

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Dream log April 28, 2021

I woke three times last night.

With the poem “There was a little girl” in my head.

It starts like the real poem, but then it changes. Three times. It starts three times and each version is different.

I nearly got up the first time to write it down, but I nailed it solidly into my memory and went back to sleep.

Twice more.

The third time I think I dreamed the poem and then I am on a golf course. I am playing golf with President Obama.

“It’s really windy today.” says the president. He is cheerful and smiling.

I am calm even though I suck at golf. There is no one else around and it’s sunny and beautiful and windy.

“Let’s play the course in a different order,” says the president. “Let’s avoid the wind. I know you can hit it any distance, but let’s go in the order that is shortest and easiest. So we will tee off from one but hit it to the flag on two.”

There is no one else on the course. And it is beautiful. And I suck at golf anyhow and what the hell? It is not conventional but when have I EVER bothered with that.

I nod yes

and wake up with his smile in my memory.

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stealthie in the grass

Stealthie in my yard, two days ago. I like the current crop of grass and weeds.

Music: Simon Lynge Hallelujah: https://www.youtube.com/watch?v=iIHpeaHJJ9s

His website is here: https://simonlyngemusic.com/. Hey Simon, when do we get another local concert? Concert in the grass? Hugs, ya’ll.

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Vaccine Adverse Event Reporting System (VAERS)

Anyone can report to the VAERS system.

Doctors may be a bit nervous about reporting covid-19 reactions. Doesn’t matter. You can report on your own.

That being said, I don’t recommend reporting if you feel like crap for a couple of days after the second shot. If it is severe, you need an ambulance or it goes on for more than say, five days, report.

The first shot is about 80% effective. So, 4 out of 5 people are protected, and 1 in 5 doesn’t take. After the second shot, about 95% are protected. That means 1:20 is not.

So if you responded to the first shot, you will have an antibody response to the second shot. I ran a fever of 102 for an hours and cancelled my day of work and the next day. You could have fever, chills, muscle aches, joint aches, whatever. Take a hot bath or sauna or hot tube, because you can sweat the antibodies out.

I would report reactions that last more than two days or are severe. You can fill the form out yourself online and send it to the CDC.

For the folks refusing the vaccine: Hello. Are you going to have covid-19 parties to infect each other? If you do and you get covid-19, I can tell you that I am glad I am not your doctor. Also I don’t want you in my house. I don’t want to be around you at the Farmer’s Market either. And I think that once everyone has had the opportunity to get the vaccine, if you refuse and get covid, you might have to pay your own doctor and hospital bill. Yeah, that is what I think. And if it bankrupts you: well, you had the opportunity to get the vaccine. Why should insurance have to pay? Or you might die. Death rate for world is holding at 2 out of 100. In the US it’s “only” 1.78 out of 100. That is a fungkload. It’s a lot of people. Choose not to get your vaccine and you could be one of them. I just found out this week that a friend from medical school died in November: age 59. Do not tell me it’s all 80 year old “who would have died anyway”. Each of us will die anyway and I don’t want to die of covid-19.

I took the photograph in medical school: it’s my fellow doctor who was found to have covid-19 after he died suddenly, age 59.

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myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

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Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VHΒ±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

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biotics explained

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Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

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