Category Archives: healing

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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.

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

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Medicare Disadvantage

Medicare Advantage plans, from for profit insurance companies, are being rebranded Medicare Reach.

They seem like a good deal. They are if you are healthy forever! So what is the catch?

In Michigan I go to look at a nursing home with a friend. The administrator shows us around. Small rooms with two beds. We also look at an assisted living. Much larger rooms, the friend can stay overnight in the private room with the parent, at a cost of $4000.00 per month. Her insurance will not cover it.

But back to the nursing home. The administrator tells us that it’s good that her parent does NOT have a medicare advantage or medicare reach plan. “It is nearly impossible to get the insurance companies to approve a rehabilitation stay at a nursing home.”

“Really?” I say.

“Oh, really.” She says. “The insurance companies certainly don’t want you to know that when you buy their “deal”.”

So, the for profit insurance companies want you if you are of medicare age and are well. BUT the catch is that they really don’t want to cover if you are sick. Think carefully before you buy a pig in a poke!

Physicians for a National Healthcare Program is working to stop the insurance companies from skimming profit off the healthier elders and then abandoning them when they are not healthy. I wish that the United States citizens would clue in, get mad, and vote for single payer! Write your congresspeople and put pressure on them! They listen to money but in the end, they live by votes. Make sure you look at the fine print, because the insurance company is there to make a profit off you, not preserve your health.

The picture is Mordechai, our plastic clinic skeleton, distrusting Profit-Over-Health Insurance Companies.

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Walk with rabbits

Some days I can’t chuckle
when the news rolls in
my heart could buckle
shootings again

US gun habits
What’s up doc? Dagnabbit.

Shootings on the year of the rabbit
dancers dead as they celebrate
Why are guns such a habit?
I refuse to fill my heart with hate

Gun sales stab it
Year of the rabbit

Forgive but do not reconcile
let my resolve not buckle
mental health takes a while
let no demented chuckle

Fearful gun habits
online snared like rabbits

They argue they must defend their homes
daughter teacher on the line
fearful males online alone
think that guns will make them fine

Fear is a habit
Stop being rabbits

Leave your basement
Help another
Walk the pavement
Earth as mother

Make it a habit
To walk out with rabbits

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For the Ragtag Daily Prompt: chuckle.

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Don’t shilly-shally! DANCE!

Ooooooo! Listening to Mitch Ryder and the Wheels Sock it to me baby, one of the songs here.

My muscles are BACK. Sometime in the last two weeks, while I was helping a friend in Michigan, my muscles came back. Three days ago I felt better than I have since before March of 2021. My normal energy level was back.

So what did I do? Overdid, of course. I did a beach walk on Thursday and then a local walk with a friend on Friday and then went to hear Johnathan Doyle on Saturday, fabulous! I had to dance!

Paid for it yesterday. The fast twitch muscles are back but it doesn’t mean they are strong. They are NOT strong. I have to be patient (I am not patient!). Yesterday I spent most of the day lying on the couch. Everything hurt and cramped. Ow.

BUT I can build those muscles up!

Here are some of my ex’es and my favorite bands and songs from jitterbug and lindyhop dance back in Washington, DC. I was delighted to see that Little Red and the Renegades is still playing. They played at the Kennedy Center early on New Year’s Eve. My spirit wanted to go but the body did not.

That is not a song they played back in the 1980s. We all get older!

And Doc Scantlin and his Imperial Palms Orchestra! We danced to them and I know the gentleman lindy hopping at the start. Probably others there too. We loved the Spanish Ballroom at Glen Echo.

And this was one of my ex’s and my favorite recorded songs to dance to… gosh, how naughty but true right?

I am so happy to have my fast twitch muscles BACK. Now I just need to build them up!

The photograph is from 1989, at our wedding. We are doing a move that was called “New York Kicks”. I think the photographer is my ex’s uncle. The band was Darryl Davis who is also still playing and is a friend and have you seen any of his Ted Talks?

Don’t Shilly-Shally! Get your dance shoes on now!

For the Ragtag Daily Prompt: shilly-shally.

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Deleting spam

I still think of you occasionally
when I pay the bills, I think of you
when I clean the catbox, I think of you
when I clear the spam, I think of you
it’s the Get’a’super-sized’rod’ ones
that make me think of you and laugh
I want to send them to you every time
I still think of you occasionally
Get’a’super-sized’rod’ and poo and bills

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Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

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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

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Blessed

You needn’t worry that I will importune you.
Words explode and swirl upon the page.
It’s more likely that I’ll say blankly “Who?”
Since I enlarge upon a fascinating stage.
Approaching two years since I was taken sick,
on oxygen I wrote a poem of farewell.
Career ending injury: nature can be such a dick.
Breathing is important. Absent it is hell.
I am still healing. I hope that I can ski.
I am lucky that my fatigue is relatively mild.
My oxygen can go 9000 feet up where I’ll see
muscle dysfunction truly makes me wild.
Friends and family gather close and gather far
I feel blessed beneath a lucky star.

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Sonnet #2 for the Ragtag Daily Prompt: sonnet.

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Elephant

My daughter got the elephant in the mail yesterday.

She called me, very happy with it. “It has a TAIL! It matches the pillowcase. I love the fishy fabric.”

The back story is that when she was a baby, her father’s mother made her a pillow. It had two pockets. In the pockets were four small stuffed toys. Her older brother has one too. The toys were not exactly the same. Hers had an elephant.

When she got sick earlier this year, I start sending her care packages. I send the pillow with three of the stuffed toys. However, I don’t find the elephant.

She loves it but asks, “Where’s the elephant?”

“I’m still looking.” The elephant is pink, with fabric ears that are different from the body. I find it! She is coming here for a month, so I don’t mail it. She is very pleased with the elephant.

It goes AWOL before she flies back to work. “Check the tent, mom.” She stayed in the tent in the back yard with two of her friends. I take the tent apart. No elephant. I check the sleeping bags. I sweep under her bed and search the house. As my daughter says, my house has a lot of hiding places and the cats like the elephant too. No elephant.

So for her birthday I make one. I remember how it looks and I make it while watching some continuing medical education. It’s easier to hand stitch than to get out the machine. I have to buy a large bag of stuffing, because the store downtown only has one size. Never mind, maybe I will make more elephants.

I made her a pillowcase last year, with the whale/mermaid fabric and the fish. So the elephant matches.

And she likes it! Hooray!

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My daughter says I can’t make clothes for her, but pillowcases and elephants are great! A breakthrough!

For the Ragtag Daily Prompt: breakthrough.