Tag Archives: RDP

by

Peace Prompt

Today’s Ragtag Daily Prompt is prompt, because we need a seventh person. Sounds pretty easy, right? To pick a word once a week and post it and then watch the replies.

It is easy and it isn’t! That day sneaks up on me. Now I try to post the Tuesday prompt 5-7 days early and set it to post on Tuesday morning.

If another prompt is missing, I can check the Ragtag site. Sometimes a prompter is gone or has something happening in their life or has put 9 pm instead of 9 am! I can intervene and fix the last problem. We fill in for each other, too.

This is an international group and a prompt for peace! Peace us and join us! I love seeing photographs from all over the world. I am itching to go to Australia to see all the birds and to India and back to Alamosa, Colorado and in fact, I would go to any of the areas that people post from. With all of the stress from the pandemic and the ongoing war, this is a daily place that makes me hopeful that people can get along and that we will reach the point where the color of our skin matters no more than the color of our eyes. It is Martin Luther King Day in the US and I am celebrating peace and hope.

I heard a wonderful sermon yesterday from a man who works in our school system, here: https://www.youtube.com/watch?v=DfmPjcEIbBA. I went to a music jam which had wonderful diversity of music. I went to hear Chicago Bob play and I have to say that I did not expect him to play Teddy Bear’s Picnic. A friend came to dinner too.

I hope that you too have pockets of peace and can peace someone today. And hooray for this musician as well: https://www.bbc.com/culture/article/20230113-martin-luther-king-day-the-song-that-changed-the-us.

Blessings.

How many cats do you see in the photograph?

by

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.

by

Clouds are my favorite blur

Clouds two days ago on the Fort Worden Beach. Washington State.

I was back east over the winter holidays. Nine days got added on for an ill friend. I was lucky to be able to change my flight and be able to help. This is the early morning holiday lights on the way to the hospital.

Clouds further blurred by water. Taken in Ontario, Canada in 2012.

Water blur study. Somewhere in Washington.

More water.

Sunrise, a new day, blurry but beautiful anyhow. Mount Tahoma, Washington State.

For the Ragtag Daily Prompt: blur.

by

Home sky

The Ragtag Daily Prompt is limit, as in the sky’s the limit!

I was traveling for longer than I expected, 19 days, and got home this week. Yesterday was the first day I went for a beach walk in a month!

The sky was absolutely beautiful with the sun breaking through.

There was a pale delicate rainbow.

I did not find a clear agate, but there are wonderful rocks.

I think this is a juvenile bald eagle, just hanging in the air and enjoying the sky!

by

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.

______________________________

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.

by

Winter travel

My daughter and I travel again this winter. We know it’s a crapshoot with the combination of Covid-19, influenza, RSV and weather. She flew from Denver to Seattle. I tested positive for Covid-19 two days before she arrived. Change of plans! A friend of hers picked her up and she stayed with them until I had finished the first five days of isolation. Then she came to my house and we both masked. I ate upstairs and she ate in the daylight basement.

We flew from Seattle a few days before Christmas. We were lucky enough to fly, since the plane the day before was cancelled and on the day after. We had a direct flight Seattle to Dulles. We had a lovely Christmas with my son and daughter-in-law.

We also got to visit with 4 over 80 year old family members once I tested negative for 48 hours. My two aunts and an uncle on my father’s side and a grandmother on their father’s side. I am so happy to have seen all of these elders! Not olders, they are not old until at least 90 and that may move back too!

For the Ragtag Daily Prompt: travel.

by

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.

_________________

For the Ragtag Daily Prompt: keyboard.