Category Archives: rural medicine

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If it don’t fit, don’t force it

Templates in primary care medicine suck.

Why? The problem with templates in primary care medicine is they focus on getting a specific list of questions answered for something like ear pain or back pain. They miss the weird stuff. They miss the outliers.

I hated the templates when we got our first electronic record in the early 2000s. The doctors who liked computers spent a year picking the system. Then they trained all the clinics for one week and we all went live. One of the biggest problems was that they liked computers and talked the language. We didn’t. We quit asking questions within a week, because when we asked a question it 1. Was a user problem and 2. They treated us like we were stupid and 3. They answered in Geek, which we did not understand.

We quit asking questions. The nurses and I all filed for workman’s comp because our shoulders locked up. Our shoulders hurt. We figured out how to get the stupid thing to work. Every doctor and nurse and PAC and nurse practitioner worked to figure it out on our own.

Two years later, they set up some standards for use. We resisted again, because they gave us orders in Geek and anyhow, we had no respect for them and we didn’t care. Change what we were doing? After no support for two years? Good luck!

It took me two years and three months to get the system to write what I considered a good clinic note. I had contacted an outside specialist three months in and asked how our notes were.

“You want me to be honest?” he said.

“Yes.”

“They suck. They are useless.”

“That’s what I thought.” I went on fighting the system and hating it. I won, eventually. Parts of my note continued to suck, but I figured out how to work around the stupid templates and put in some REAL information.

Now wait, you say, is the template totally useless?

In some situations, like emergency rooms, it may be very useful. It helps keep a harried ER team with four people from a car wreck from missing something. And if you are an ENT, otolaryngologist, you do see a lot of ear and mouth and throat things, so templates may help. But I think they are terrible for primary care.

They are good for billing, though. If you have all the boxes checked, the insurance company pays, and you can move on to the next victim. The insurance companies pay more if you see more people in a day. That is why our administration said, “See people for one thing per visit.”

However, that is not ethical. Say it is a 70 year old diabetic with atrial fibrillation on coumadin with a bladder infection. You cannot just say bladder infection and slap them on sulfa. For one thing sulfa screws up the coumadin and puts them at risk for bleeding. For a second, diabetes can affect kidney function and so can age and you have to adjust antibiotic dose for lower kidney function. For a third, if their glucose levels are out of control, the infection may not be controlled by an antibiotic. It’s not one thing. And the average patient has 4 chronic disorders in a study way back in the early 2000s. That means some people have none, some people have eight or more and most people have 3-5. Hypertension, diabetes, toe fungus, chronic shoulder pain, heart disease, the list goes on and on.

In any visit, I am alert for the things the DON’T fit. One time I am doing a new patient visit for back pain and note that she is hoarse. I bug her about the hoarseness. She admits it is continuous and has been there for two months. I do two referrals, because continuous hoarseness can be laryngeal cancer.

When she returns, she thanks me. She has vocal cord polyps, not cancer, but needs laser surgery. “You didn’t have to do that but you did.” she says. And do I feel good about not ignoring it? The visit went over time, but I’d rather go over time than miss laryngeal cancer, right?

We were taught to let the patient talk. Open ended questions. They’ve done studies that doctors cut people off from telling their stories very very quickly. If you let people talk, sometimes they say something that doesn’t fit the template, and we have to pay attention. Sometimes a comment or a couple comments are the clue, the key, the thing that doesn’t fit. Don’t force it into the template. Pay attention instead.

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The very serious group of people is a county medical meeting, 2014.

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Diagnostic quest

Some diagnoses take months or even years. How can that be?

A patient comes to me with right shoulder pain. His pain is “out of proportion to the exam”. His shoulder exam does not fit with a rotator cuff tear, he has good range of motion, it is weird. I hospitalize him and ask orthopedics to see him.

The orthopedic surgeon agrees with me. It is not a musculoskeletal shoulder problem. We do xrays and labs. We do a chest xray as well as a shoulder xray because on the right side of the body, the recurrent laryngeal nerve goes down to the diaphragm and then returns to the shoulder and neck. So sometimes shoulder pain on the right is referred pain from a problem or tumor or pneumonia at the base of the lung.

His chest xray is normal.

We are having trouble controlling his pain even with morphine.

I call the general surgeon. My patient has some small lymph nodes in his supraclavicular spaces. We actually have lymph nodes all over, but many are hidden deep in muscles or under bone. We can feel them in the neck, the supraclavicular space, under each arm and in the groin.

The surgeon says there isn’t anything large enough to biopsy.

I call the oncologist in the next county. We are too small a rural hospital and do not have an oncologist at that time. I say, “I think he has cancer, but I can’t find it.” The oncologist listens to the story. He agrees. We do a chest and abdominal CT scan and some blood tests. The patient has had his colonoscopy. Nothing.

I send the patient to the oncologist’s bigger hospital. They can do some tests that I can’t. A bone scan and a PET scan.

The oncologist calls me. “I think you are right, but we can’t find it yet. Send him back when there is something to test.”

My patient goes home with pain medicine.

He then calls me every week or two. “It still hurts,” he says. “Please come in and let me do another exam,” I say. “No,” he says and hangs up. I am a Family Practice physician so his partner is also my patient. She comes in and rolls her eyes. “He complains, but he won’t come in!”

At last he shows up in the emergency room and now he has enlarged supraclavicular lymph nodes. The general surgeon biopsies them. It is an undifferentiated carcinoma. That means we don’t know where it is from. We don’t know the primary.

The oncologist says, “Send him down, so we can do the tests again.”

The patient is at home and refuses.

I call the oncologist back. “He’s refusing.”

“Oh.” says the oncologist. “Well, we can treat it with chemo blindly. We can try to figure out the primary and treat it more exactly. Or he can choose hospice.”

Ok, yes, three choices. I call and leave a message to go over the choices with him.

He comes up with a fourth choice: he refuses to talk to me at all.

I call his partner. “Yes,” she says, “He’s grumpy.”

“We are happy to help with whatever choice he makes.” I say.

“I’ll tell him.”

He continues to refuse to talk to me or the oncologist. Eventually he goes back to the emergency room and goes to hospice at the local nursing home.

I tell the oncologist. He comforts me. “Yes, sometimes we are pretty sure there is a cancer, but it has to get big enough to find.”

I am not comfortable with that but medicine is way more complex and messier than people realize. Sometimes it is really nice to have a patient with something where I know what it is AND it can be treated. Appendicitis. Gallstones. Strep throat.

But sometimes it is complicated and can take months or even years. Stay present and keep checking in.

Diagnostic quest.

_____________________

The boat is returning to the water after work in our boatyard. Healed and seaworthy.

For the Ragtag Daily Prompt: quest.

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Nerve ablation

Would I do this? A nerve ablation for chronic pain?

https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.nerve-ablation-for-chronic-pain.zx3505

Two people mentioned nerve ablation to me this week: one in the back and one in the knee. Would I do this?

Holy denervation, Batman. I’d like to think that I wouldn’t, but pain does suck.

The problem is that pain is information, even chronic pain. The current thinking in medicine is that chronic pain is some sort of glitch in the wiring or the brain where something keeps hurting even if we can’t see much of an injury.

Like grief or a broken heart or the death of a loved one.

Those pains can soften, but do they entirely go away? The death of loved ones doesn’t. It’s been a decade since my sister died of cancer and I still think of things that would make her howl with laughter. She understood me in a way that no one in the world does: ok, except for my children. My children are adults now and out in the world and observing other parenting and non-parenting and disastrous young adult choices. My son now has a high school classmate dead of opioid overdose. A topic for another essay.

Back to chronic pain. Medicine in the United States does patients a terrible disservice by talking about the spinal discs all the time. 99 times out of 100, the pain is NOT a disc. The back is very complicated, with 6 layers of muscles, and some of those muscles are only an inch long. They all have to work together in a fluid way. Often, we forget this. Our muscles try to obey us and we lock them into a terrible position and they try and try and try: and then tear and hurt.

Lock them? Yes. We have three main types of muscle: fast twitch fatigable, fast twitch non-fatigable and slow twitch. Slow twitch don’t get much attention in the United States MORE AND FASTER dysfunctional ADHD culture. Slow twitch muscles are the posture muscles. If you lock them in one position, they will stay there. Even when you get up from the computer or desk or bent over picking strawberries.

When the muscles lock, remember that they are all attached to bones. Every muscle attaches to at least two sites. Picture a muscle that crosses the knee joint locking into a shortened position. Now, do you think the knee moves normally? NO, it doesn’t. And if the muscle is tight and locked, the knee joint can be damaged by not being able to move freely.

Now, think about your back. You have seven cervical vertebrae, 12 thoracic and five lumbar. So 24 separate bones, and then other bones, like ribs, attached by tendons and ligaments and muscles. You pull a muscle in your lower back playing pickleball. It hurts. When the muscle is injured, it tightens up to protect itself. The surrounding muscles can tighten as well, and then that area doesn’t move right. The other muscles and joints have to attempt to take up the slack! They can’t move normally either! All too often I ask what people did when their back started hurting and all they did was take something to mask the pain and keep going.

Pretty dysfunctional.

So what do I want you to do with a new injury? RICE. Rest, ice, compression, elevation. Rest the muscle. It’s hurt. Ice for ten minute intervals in the first 48 hours, not heat. Heat increases bleeding and swelling. Muscles can bleed if they are torn. You have had a bruise sometime in your life, right? You won’t see a deep muscle bruise, and personally I have trouble looking at my own back. You may add heat after the first 48 hours. Usually the peak of swelling and bleeding is by 48 hours. Compression: if it is an ankle or an elbow, an ace wrap holds the joint still and reduces swelling. You can press ice on your back, or lie on an ice pack. Go ahead and shower but not super hot at first. Elevation for arms and legs: gravity helps reduce swelling and pain.

What if it’s been hurting for a year? Your blog was too late!

Check your posture first. If you have been avoiding moving a part of your body, you need help. If your posture is terrible, you really need help. Take breaks at the computer! Get up and walk! And see your primary care person. Physical therapy, occupational therapy, massage therapy. Pay attention to what makes the pain worse and what makes it better. Alcohol or pot might make if hurt less, but that’s not fixing the problem and could make it worse. Muscle relaxants are not great either. The muscle tightened up to keep from tearing, remember? And scar tissue can form in muscle. You need to work with someone to gently break down that scar tissue without tearing the muscle again. So muscle memory is for injuries too. If a muscle has been traumatized, it has scarring and it remembers. It may tear more easily and will tighten up more easily. Listen to your muscles. They do not just tighten with trauma, they also tighten with stress and are more at risk for injury. Learn how to reduce your stress, go into a parasympathetic relaxed mode, and help your muscles.

For long term chronic pain, I think of present injury, old injury and then brain and emotional injury. We are often afraid of injury, that we will be hurt, that it will hurt forever, that we will be disabled and be alone and starve. Our culture for the most part celebrates the young and strong and the survivors. I don’t think we have a “chronic pain day” where the whole country thanks the people who have chronic pain and work anyhow, to take care of each other and their families. Maybe we should have that. The emotional part of chronic pain must be addressed too.

I would be very cautious about having a nerve cut, or ablated. The exception for me is the abnormal heart pathways that cause arrythmias. Yes, I think ablating them is a good treatment, but we still try other things first. There can be complications of any surgery.

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The photograph is me and my ex dancing at our wedding in 1989. Swing dancing is a delight and you have to not injure your partner or yourself! We noticed that even one drink would affect our dancing and our favorite place to dance was at Cabin John Park, which had no alcohol at all. Posture is important. I think the photographer on this one was my ex’s uncle but we also had a dance friend who took wonderful photographs.

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Long Covid healing crash

I have a friend with Long Covid. Eight months now.

My friend describes blood sugar crashes. She does not have diabetes and was tested before Covid. She has not been tested again.

“Sometimes I eat dinner, feel better, and then an hour later I feel terrible again. I have to eat again. And I ate extra in November and all that happened is I gained ten pounds. So eating extra doesn’t work.”

I suspect that as the clue: the feeling terrible an hour after she eats.

I call her the next day: “Spread the carbohydrates out. It could be that your body is producing too much insulin, storing the glucose and carbohydrates, and then your blood sugar gets too low. That can happen early in type 2 diabetes, but this could also be a healing mode.”

I write about carbohydrates to her. Anything that is not a fat or a protein is a carbohydrate. So all the grains and all the vegetables and fruits have carbohydrates, sugars. Glucose, fructose, maltose, lactose. Milk products contain lactose, but also fat and protein. Avocados are weird fruit and mostly fat. Sugar beets and peas are high sugar vegetables. A small apple is 15 grams of carbohydrate and a large one is 30. A tablespoon of sugar is also 15 grams of carbohydrate. A coke had 32 grams and a Starbuck’s mocha has over 60 grams. I quit drinking them when I looked that up. Empty calories.

A cup of kale has only 7 grams of carbohydrate for our bodies. The rest is fiber that we can’t break down into sugars. Fiber doesn’t raise our blood sugar. I wonder about cows with their four stomachs: they can break grass down into food and we can’t.

At any rate, my friend is going to try 3-4 meals a day with only 30-45 grams of carbohydrate and three snacks, at 15-30. This is an athlete and young. Most of my patients were closer to 70, so would need to do the lower end of those numbers.

I had crashes after my second and third pneumonias in 2012 and 2014. Strep A pneumonia and strep throat of the muscles. It hurt, like all over Strep A. After the 2014 one, it was six months before I could go back to work. When I did, it was exhausting. I was only seeing 3-5 patients a day at first and could barely do that. I ate one meal a day because food crashed me. As soon as I ate I went to sleep. My MD did not believe me. I saw a naturopath too. She claimed it was a food allergy and I said, “I don’t think so. I think it is a healing crash. I think my body is doing a ton of repair work and wants me asleep and not moving much.” Over the next six months it slowly improved. I went to 2 meals a day. Since then I really do not eat until I have been up for 4-6 hours. Expect tea with milk. And yes, I am getting a little nutrition through the milk, fat and protein and lactose.

I had one patient who said eating made her faint. I didn’t know what to do, but she was in the ICU, ate lunch and then fainted into her tray. The nurse was standing right there and immediately did a blood sugar and called me. Her blood sugar was in the low normal range. We transferred her to Virginia Mason in Seattle. She came back with a diagnosis that seemed pretty much like hand waving. Idiopathic (meaning the doctors dunno why) central (ok, brain) something syndrome, which meant yeah, she faints after she eats and doesn’t have diabetes and that is weird.

I am reading about similar neurological symptoms with Long Covid and also POTS: postural orthostatic tachycardia syndrome. This translates to heart rate goes faster than it should when the person stands up. Again, the cause is not clear and it’s not clear how to fix it.

Once an older patient went to the neurologist to discuss getting dizzy when she stood up. She returned grumpy. “He said that I just have to stand up slowly because I am 80. I don’t feel like I’m 80. I want to hop out of bed like I always have. But if I do, I nearly faint.” Her body was taking longer to equilibrate blood pressure after she stood up. The neurologist said no medicine: stand up slower. She grumpily complied.

I told my friend that maybe the pancrease is stressed and producing too much insulin. To store food. But another possibility is that her body wants her to lie down and rest so that it can do healing work after eating. This would make any young person impatient, but sometimes we have to listen to our bodies. I have learned THAT the hard way.

Blessings.

__________________

The photograph is of a Barbie ambulance/clinic. It does have a gurney, but the back opens up to be a fairly well appointed clinic, with lots of details, including a television in the waiting room. Today the doctor has wings. Fairy? Angel? We are not really sure.

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Doing the best with what you have

Medicare doesn’t cover everything.

It can’t. There are new things being thought up all the time. Some are legitimate and some are scams. There are tons of quack medicine videos and supplements and stuff on line.

But there is also a matter of personnel and resources. Sometimes we do not have enough. Then we have to do the best we can with what we have.

There is a particularly difficult case from my second year of rural Family Medicine with Obstetrics. Things went right but just barely. This is from memory and over 25 years ago, in the 1990s, so I can’t violate hipaa because I can’t remember names from then. Mostly.

I had a pregnant woman whose pregnancy had gotten complicated. Her ultrasound showed an abnormal placenta. Very rarely, the placenta can grow into the uterus too far, and form a placenta increta. Even more rarely it can grow THROUGH the wall of the uterus and into another body part. That is called a placenta percreta.

In this case we thought that the placenta had grown into the bladder. We were not certain. The obstetricians were aware. Our patient was aware. A cesarean section was planned for when the fetus was mature.

Then she developed a second pregnancy complication. Preeclampsia. This is a complication where blood pressure rises, there is protein in the urine and many things can go wrong. It can progress to eclampsia, which means seizures. This is Very Bad, which means the mother and fetus can die.

She developed HELLP syndrome. This is an acronym. The P is what I worried about, platelets. Platelets help your blood clot. Her platelet count was dropping out of sight. We were rural, 180 miles from the nearest high risk obstetrician. We did have blood for transfusion but NO PLATELETS.

The treatment for preeclampsia with HELLP syndrome is to deliver the baby. I called our obstetrician the minute I got the lab result. “No platelets — can I fly her out?”

“YES! FLY HER OUT!”

Transfer to a bigger hospital with facilities for a premature infant and with platelets, because she needs a cesearean section and she could need a hysterectomy if that darn placenta has grown through. Messy.

Problem number three: weather. We are in Alamosa, Colorado, at 7500 feet, which is the valley floor. We are surrounded by 14,000 foot peaks with passes in four directions. That nearest hospital with platelets is 180 miles and over a 10,000 foot pass and it is snowing.

I call Denver first. 250 miles. Fixed wing life flight. Nope, the weather is too bad to the east and north.

I call Albuquerque. 250 miles. Nope, the pass is socked in, the plane can’t get through.

I call Grand Junction. About the same distance. They say “WHERE are you?” I’ve never tried to send anyone there before. They demur and I cajole and beg. “Okay, okay!” The high risk obstetrics doctor can’t be looking forward to meeting this patient, but they accept.

From the start of calling to the arrival of a plane and crew usually takes about four hours. I want to chew my nails.At last I hug my patient goodbye and they go.

I get the call about 6 hours later. Delivered and they did have to do a hysterectomy, but mother and baby are fine. Her bladder was untouched. They had platelets.

Whew! I was so happy, and mom and baby too. Let’s give credit to my patient too: she got prenatal care. She paid attention. She knew she was high risk. I had told her to come in if anything changed and she did, so we caught the preeclampsia on time.

But it could have gone wrong in all sorts of ways. We were both careful and we were lucky. If the storm had been over Alamosa we would have done the best we could then, too, but it could have turned out quite differently. And thanks to the high risk obstetrics doctors who accept complex patients that they have never seen from rural doctors like me!

Blessings. Blessings on all the nurses and doctors and midlevels and hospital housecleaners and security and lab workers and the Life Flight personnel and First Responders and everyone who has worked and worked and worked through the pandemic.

________________________________________

I took the photograph in Maryland in December: abstract and complicated water, ice and reflections.

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Immunomodulation

I wrote this for a group of physicians, so it’s heavy on the science. BUT I think everyone can benefit from understanding the difference between the sympathetic nervous system and the parasympathetic. Also, we can survive without the sympathetic but not without the parasympathetic.

My essay yesterday was about antibodies to tubulin, what tubulin is and how antibodies work. This doesn’t seem very useful if the only thing we can do about the antibodies is remove them by theraputic plasma exchange or give anti-inflammatories. However, there are other approaches. As a rural Family Physician, I have an ever expanding toolbox that I learn from multiple specialties and patients. Mothers of children with PANS/PANDAS may already have figured out many of these techniques.

Our bodies have two basic modes for the nervous system. The well known mode is the sympathetic nervous system. This is the amped up fight or flight system. When we have a very activated sympathetic nervous system, we make less thyroid hormone and less sex hormones and switch production to more cortisol and adrenaline. This helped me to understand adult patients who say they are constantly tired, don’t want sex, they keep getting sick and they also have trouble sleeping. Borderline low thyroid, low sex hormones, elevated cortisol and elevated adrenaline, though it may be at the upper range of normal. The sympathetic nervous system readies muscles for flight or flight, turns digestion to low, reduces secretions everywhere (eyes, salivary glands, stomach, gall bladder, urine, etc) and tightens fascia around the muscles. Blood pressure and heart rate rise. High cortisol over time is not good for the immune system.

The other mode is the parasympathetic nervous system. This is the relaxed system. Digestion and urination works well, muscles relax, cortisol and adrenaline come down, thyroid and sex hormones are manufactured. Blood pressure is lower and heart rate is lower.

The first technique I use to change from sympathetic to parasympathetic is breathing. Swedish hospital is teaching the anxious patients, chronic pain patients and veterans slow breathing. Five seconds in and five seconds out. They recommend building up to 20 minutes over time. If done for 20 minutes, they said that almost everyone calms from sympathetic to parasympathetic. Some people endorse square breathing: in, hold, out, hold, in. I did daily Zen Buddhist meditation facing a wall for 40 minutes during college. This also works and some children might find it an enjoyable challenge. I find Zen meditation easier in a group than alone. I asked a 30 year veteran of the Special Forces to try the 5 in and 5 out breathing because he would find his muscles tight just watching television. He was reluctant, but he returned and said that he is surprised that it works. He also said that he is not used to the relaxed feeling and it feels weird.

Other ways of activating the parasympathetic nervous system for adults include walking, rocking, laughing, magazines seem to love hot baths, anything that relaxes. Playgrounds include places to climb, spin, swing and hang upside down, for children to get a break and play. Again, different people find different things relaxing. During my second strep A pneumonia, an antibody titer came back at 600 with normal being 200 and below. I have read that children can have titers of 2000. I could barely function with a titrer of 600 (off work, obviously) and thought that if my titer was 2000 I would hide under my bed and not come out. I would like input from child psychiatry on downregulating the sympathetic nervous system to parasympathetic in children, but my guess would be that a safe place is very important. Where is that safe place for each child and when they are not having a flare, can they practice going to it in their minds?

Another helpful parasympathetic activity is games or puzzles. My father died leaving an out of date will and a difficult estate. For the year that I worked on it, I did a suduko every day. I could not solve the estate quickly but I could solve the number puzzle every day and that gave me a small window of feeling good and relaxation. Board games or puzzles could work as well. I am less certain about computer games: my understanding is that the visual cortex is activated along with other parts of the brain. This seems more sympathetic than parasympathetic but I could be wrong. The familiarity of a video game may feel very safe and more predictable than the illness. Old movies and reading beloved books is parasympathetic for me. Oddly, sex is parasympathetic in women but both sympathetic and parasympathetic in men. Music can relax many people, and repeating the same music or album over and over. Comics and silly cat videos are parasympathetic.

As a physician, I often acted in a high sympathetic nervous system. A friend of my son’s said, “Your mother is crazy.” My son replied, “No, she’s just intense. About EVERYTHING.” I had to learn not to be intense about everything. We can model relaxation and parasympathetic activity and slowing down for our children, but we may have to set more boundaries at work.

Here is the best write up I have found on the internet about the parasympathetic nervous system: http://www.wisebrain.org/ParasympatheticNS.pdf. They have a great explanation as well as exercises to calm to parasympathetic.

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PANS/PANDAS and diet

I have been thinking about PANS and diet.

When I am sick with pneumonia, I have to keep my carbohydrate intake as low as possible, or I get much much worse. I am attributing this to the lysoganglioside antibody. I have been puzzling about the lysogangilosides because a conference last year says that in some children with PANS/PANDAS, the antibodies cross the blood brain barrier and then macrophages appear to be killing ganglion brain cells. They described a truly awful case. I completely understand children refusing to eat or only eating one or two things when they are having a flare. And everyone may have different food issues because we all make different antibodies. This makes it darned tricky to sort out.

But back to ganglion cells. These are the β€œnerve” cells. They make up the brain but there are also nerve cells all over the body. And more recently we have started calling the gut, the digestive system, as second β€œbrain”. This is because the gut turns out to have tons of ganglion cells.

So, my lysoganglioside antibodies do not appear to attack my brain. But something attacks my gut. It could be any or all of the antibodies, actually. Ganglion cells in the gut would have receptors for dopamine, the gut has smooth muscle that is powered by tubulin and my understanding of lysogangliosides is that they clean up dead or damaged ganglion cells and should not bother healthy ones. Studies of patients with lyme disease are showing the same four antibodies with a rising baseline for people who have more infections, so my guess is that my baseline has risen enough that I do not tolerate gluten. I may try it again, because my good news is that my muscles feel normal again. No more tubulin blocking antibodies, so I have fast twitch muscles again. They are weak but functional. I am starting to exercise them. Hoorah! If I am super lucky, whichever antibody screws up gluten for me has also dropped, but it may not have. The antibodies do not all do the same thing at the same time. This flare started for me when I had my influenza vaccine and then 5 days later, my fourth Covid-19 vaccine. The shots SHOULD get an antibody response but it was annoying to have the muscle dysfunction again. I managed to avoid getting pneumonia, so the response is shortened, about two months. I had very little of the dopamine 1 and 2 effects, so it was a relatively mild effect. The annoying bit was that I was improving in exercise at pulmonary rehab and the vaccines knocked me back down.

When I have pneumonia, eating carbohydrates makes my breathing worse. That’s weird. Well, not really. This fourth go around I realized that I could mitigate the effect of rising blood sugar as I improved by drinking bicarb with each meal. Sodium bicarbonate, baking soda in water. Why did that help?

Bicarbonate is a base. If it helped the symptoms, then it was balancing out an acid. Rising blood sugar was making me acidotic. When we are acidotic, our bodies will try to increase bicarbonate by speeding our breathing. If I have pneumonia and am hypoxic anyhow, then additional pressure on breathing is definitely not a good thing. So adding a glass of water with a teaspoon of baking soda reduced the acidosis. Then food did not affect my breathing.

Would this help all children with a pandas flare? Again, everyone has different antibodies, so the answer is probably NO. I think it is enormously important to listen to children with a PANDAS/PANS flare and give them an assortment of simple foods to choose from. No pressure for a balanced diet at the height of a flare, because some food or food group may make them feel terribly ill and actually may affect their acid/base balance and MAKE them more ill. I would offer something mostly fat: avocado or bacon or a high fat salami or cheese. Some steamed or raw vegetables, ranging from the high carbohydrate to low. Peas are high, kale is low. No sauces or dressing. Some protein sources, chicken breast or meat or beans. A grain or grain source. Offer fruit but do not push. Let the child figure out what they can eat and roll with it. Try to find more things in that food group. Remember that the main food groups are fats, proteins and carbohydrates. There are a bunch of different carbohydrates, which are sugars. Glucose, fructose (in fruit and corn syrup), lactose (in dairy), maltose, dextrose and others. I would avoid junk food and anything prepared. When I am sick I do fine with lactose, but all of the other carbohydrates make me feel very very ill and mess up my breathing. This is individual and will differ from person to person. If eating makes you feel very very ill, it’s easy to understand why some children stop eating. The obsessive compulsive traits are understandable too: if you suddenly don’t tolerate the foods you love and you do not understand what is happening (and your adults don’t either), you might try to behave in ways to bring back the good old days. Do everything the one right way and maybe things will return to normal. It’s a terrifying illness for children and for parents, but I have hope that my experience will help other people.

Blessings.

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Keyboard supervisor

Elwha supervising me at the keyboard.

In high school I took typing for dummies. I was terrible at it and slow. Many women were avoiding typing classes in the late 1970s because they did not want to be secretaries. I wanted to be a writer and knew that I was a terrible typist. I also could not spell my way out of a paper bag. My mother was quite dyslexic and did not care. Once I had to sound out a word at the store from her grocery list: “LETIS”. Oh. Got it. Her letters are wonderful, not only interesting and creative spelling, but also wandering tenses and subjects.

We got our first electronic medical record in the early 2000s. We went from looking up labs on a computer and using a computer for maybe an hour total per day to full on eight hours a day. My shoulders and the nurses’ shoulders all locked up and we all filed for Workman’s Comp. I had to work with physical therapy to get my shoulders to unlock. My nurse pointed out that all problems were treated as “User Problems”. That is, WE were the problem, not the program. I realized that having the doctors who love computers pick out the program, learn about it for a year, and then teach us in two days and go live was a massive mistake. None of us understood it nor did we understand any of the computer lovers’ terminology. We rapidly quit asking questions because we didn’t like being treated as morons. Every person who was not a computer lover figured out their own work arounds. Two years later, the computer lovers tried to get us to standardize what we were doing. It’s not very surprising that we resisted and hated them. We had had to figure it out on our own with no help and we were very cynical and disbelieving that they would now “Make it easier.” Nope, they didn’t.

If I were to do it over again, the team picking the electronic medical records would include a couple of older doctors who hate computers. One of the selling points to the computer lovers was “you can write your own templates”. Our response was “We would rather be boiled in oil.” Three years after we got the system I asked the head computer lover doctor to write me a template. It was generic. Patient is complaining of (a problem) (more than one problem). The (problem) has been present for (a day, two days, a week, a month, a year, too long). The problem is (getting worse, the same, getting better). And so forth. Because we had all sorts of problems that did not have a template. My computer lover doc rolled his eyes, but set it up for me.

I also asked the clinic CFO WHY they didn’t set up typing lessons for the doctors who couldn’t type. I watched one of our group hunt and peck with two fingers. “You want them faster, right? You’ve said we could do the whole note in the room. How can they if they can’t type?”

“We are not giving them typing lessons.”

“Well, I think that’s misguided.” Ok, what I meant was that I thought it was STUPID.

Another selling point was that we could finish the note in the room. It turned out that I could do the note in the room after I had fought with the program for two years. It consistently took me 25 minutes. Then they ramped up the schedule and set us all at 20 minute visits. I started running late all the time. I told the front desk, “I’ve been told I should get the note done so I am. And if it takes me 25 minutes, that is what it takes.” Once the hospital kicked me out, I started my own clinic and did 30 minute visits. This did not make me rich but it made me a heck of a lot happier.

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For the Ragtag Daily Prompt: keyboard.

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Release the Kraken!

I chose measly for the Ragtag Daily Prompt because there is a measles outbreak. Great. Another outbreak? Yes. Parents are behind on bringing kids in for Well Child Checks and kids are behind on immunizations, so measles.

Measles is way more infectious than Covid-19 and is spread by coughing and droplets. Per the CDC: “Measles is one of the most contagious diseases. Measles is so contagious that if one person has it, up to 90% of the people close to that person who are not immune will also become infected.” Read here. Immunizations are at 18 months and age 4-6, two shots. That will make the vast majority of children immune but not quite all. No immunization reaches quite 100%. Measles unfortunately can have some awful and serious complications including death. If your child is behind, get them immunized as soon as possible!

If some has the measles, the rash, they are measly. That is one of the definitions of measly.

Measly weasely
You are so teasely
Your heart has a rash
Our friendship is hash
You toss me like trash
Your heart just smashed
You are so measly
Weasely teasely

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I keep wondering if the earth is annoyed at the way people are behaving. Perhaps she has said, β€œRelease the Kraken!” But the most efficient Kraken turns out not to be a giant monster attacking New York City, but Covid-19, influenza, measles and strep A. Invasive strep A is out there too. Having had strep A pneumonia and borderline sepsis twice, I very much do not want invasive strep A.

It’s the little things that get us, right? Viruses, bacteria. Measles is a virus, like influenza and Covid-19. Strep A is a bacteria. I had very bad influenza in 2003 that put me out for two months. I read about influenza and thought, oh, we will have another pandemic and in fact we were overdue. They come about every fifty years. My children heard quite a bit about it. My daughter said she wondered if I was a little nuts until the ebola outbreak and then she decided that I was probably and unfortunately correct. The only surprise for me was that it was a coronavirus instead of influenza. That and that humans behave in very interesting and often dysfunctional ways when they are stressed: and the same ways as in the 1918-1920 influenza pandemic. Logic flies out the window replaced by panic, magical thinking and rumors and people happy to take advantage of others. Selling fake cures, refusing masks, refusing immunizations and denying that it is happening at all.

For the Ragtag Daily Prompt: measly.

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Covid for Christmas

Muscles aching all month then are worse
two more days I ignore the pain
one night I get chills and want to curse
morning testing confirms fears from my brain
sniffles and headache, muscles ache more
text the clinic and call when they’re open
plans upset, friends go to the store
daughter diverted, not what I was hoping
the days count down, I have enough time
glad to get notice before she came here
might as well try to tell it in rhyme
isolate my estate appetite queer
it’s covid for Christmas, not what I’d planned
but women can flex and can’t be unmanned