Category Archives: music

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Antibodies to tubulin

All right.

I am thinking about tubulin blocker antibodies. How would they work?

About 2 weeks ago, I had trouble walking down the stairs because my quadriceps just did not want to bend. In fact, all of my muscles felt awake and grumpy. As if I were Sleeping Beauty, now awake. Of course, if I was Sleeping Beauty and some jerk kissed me awake, I’d punch his lights out. Hands off!

Anyhow, I concluded that my tubulin antibodies had released. Was I better?

Well, no. It’s been weird. In me it’s the voluntary fast twitch muscles that don’t work when I have a PANS/PANDAS reaction, so they are back on line. The grumpy muscles are the slow twitch ones who essentially are screaming “WHERE HAVE YOU BEEN, I’VE BEEN DOING ALL YOUR WORK SINCE MARCH!” Nine months. The fast twitch muscles are weak, the slow twitch muscles don’t trust them and I am having trouble getting it all to work together.

My balance is fine. It just all hurts and is a bit unreliable.

I was in Michigan for Thanksgiving, staying with old friends. My oldest friend there is 80 and does not have wi-fi or any internet. That made doing any blogging quite a challenge and many thanks to everyone who pointed creative spelling. I would go to her son’s house daily and try to put up the work I’d done at her house. Not the way I usually do it and three kids distracting me, which I enjoyed.

It is bowling that makes me realize how weird my muscles are right now. I went bowling with the middle (15) and younger (11) child. Mom watching all of us. My role is Weird Aunt, more or less. I have bowled maybe 12 times in my life. I guttered the first three balls, a 9 pound orange beauty. My muscles all started screaming at me at once in my upper and middle back. Oh, I thought. So I slowed way down and tried to slow bowl. Next was a strike. I ended up bowling 100, which I guess is not so bad for someone who really has no idea what they are doing. My muscles were grumpy but slow was ok and I didn’t pull anything badly. Next morning I am quite stiff.

I am trying to figure out how to rehabilitate the muscles. Do I exercise? Slowly? It’s as if half a team has been missing for 9 months and is now back. The remaining team members are tired, pissed off, and have figured out how to work without them. They aren’t very pleased about relinquishing control and they don’t trust the part of the team that’s been missing. I would go to my doctor and ask to see a neurologist or ask for physical therapy, except that since PANS/PANDAS is barely believed in in children, there are only a few doctors that work with adults and other doctors seem to think they are quacks. One writes articles for Psychology Today. I’ve thought about contacting him, but he’s a psychiatrist. How much do psychiatrists know about muscles?

Let’s extrapolate this too, to the people with really bad chronic fatigue. Presumably they have antibodies to tubulin that affects more muscles, fast and slow twitch. No wonder they lie in bed. I would presume that they are hypoxic too, if they could walk, but they barely can. The Functional Medicine doctors are treating folks with hyperbaric oxygen and I think it might help with these muscles that don’t work and can’t move. It is sneaky. It’s not that the muscle can’t move at all, it isn’t paralyzed, it’s just that the exhaustion and fatigue that comes after moving it is terrible. The body says very very clearly : “DON’T DO THAT.” And we are still in the infancy of looking at antibodies, so we aren’t measuring them. I was going to say we can’t type them, but that’s not true. We are using monoclonal antibodies to treat cancer, so there are ways to isolate and type them. Medical science may explode with this and can’t you see the potential for misuse? Imagine an army affected by a tubulin blocker antibody, against an army with a tubulin augmenting antibody. Holy moly. It has the potential to be really really horrific, which is why I am putting all this up on everything2. Keep it in mind, ok? Nothing like making information public to prevent secrets from screwing us over.

And that’s the news from me. “Har det godt!” which is Danish for “Have it good!” or have a really good day.

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Thank you for the music

I have been in Rainshadow Chorale since 2000. My father, Malcolm Ottaway, was one of the eight people who started it in 1997. He and my mother moved here in 1996. My mother, Helen Burling Ottaway, died of ovarian cancer on May 15, 2000. Rainshadow agreed to sing a Byrd Mass for my mother’s memorial. My father asked if my sister and I could sing in the chorale for the memorial. We were told yes. I had moved to Port Townsend at the end of 1999.

After the Memorial, I asked if I could stay in the chorale. The answer was yes and I have been in it ever since.

Our director, Rebecca Rottsolk, is retiring from the chorale after our next concert. She has picked favorite pieces. I have sung in nearly every concert since 2000, though I couldn’t sing in the one right after my father died in 2013. He followed my sister, who died in 2012. My throat wouldn’t let me sing that one.

So Rebecca, thank you for the music and thank you for being a wonderful director and forcing us to level up over and over. I am sending you peace and love and joy.

And everyone else, put this concert on your calendar.

Rainshadow Chorale practicing outdoors wearing masks in a fine rain. Dedication.

For the Ragtag Daily Prompt: thanks.

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What do you see?

What do you see in this rock?

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Mother’s Day Songs: motherless children

A friend and I are talking about Mother’s Day yesterday.

Somehow having a song about Mother’s Day came up. “Bet I can think of one.” I say.

“Humph.” says the friend. Or some skeptical comment.

I start singing.

“That’s NOT a mother’s day song.” says my friend.

“Well, it is if your mother is dead.”

“It’s not cheerful.”

“Yes, that’s true.”

So here is a recording. I haven’t learned the guitar part yet so I thought… well heck, why not sing along with Dave Van Ronk?* This is the third take. Might replace it with a later take later today.

Trigger warning: I miss my mom. This is about missing our moms. Hugs, all.

sing along with Dave Van Ronk

Happy Mother’s Day and hugs if you miss your mother.

*Is this a copyright violation? It probably is. Someone yell at me if it is. My brain is muttering something about sampling. Let’s see, from circa 1959 to 1961… does that make a difference?

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you know you are hypoxic when

You know you are hypoxic when … all you have left are dead soldiers….

I turn them upside down when they are empty.

No, I am not really out of oxygen. Send something for oxygen to the people who desperately need it now. Because we could be next and because really: we have so much.

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trees awake

Do you know the round?

Spring would be a dreary season

If twere nothing else but spring

would be a deary season….

For the Ragtag Daily Prompt: awakening.

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leaf light

Well.

Being off from work, for an indeterminate time gives one time to think.

I have been advised by various people to move. Pick up, sort out, get rid of and move on.

I think they are right. I have been in this house for 21 years. Time to change it.

So, I am going through things. Washing everything washable. There is a lot of that. Starting to sort and give away things. I sent a unicorn horn and ears and a tail and tiger ears and tail to a five year old a couple days ago. She can be a unicorn or a tiger or a ticorn or a uniger. And rope the adults in.

Photos now. I could have a ginormous bonfire of old photos. It’s ok to get rid of the ones that have no remaining connection, right? I may give them to friends to cut up and use in art, that’s cool. I will keep the connected ones.

I took the leaf light picture with my phone yesterday evening. Crashed early.

Hugs, all.

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Music for jellyfish

Since I am still out with post pneumonia tachycardia, my daughter and I went down to the beach yesterday.

I can sit, no problem. I can walk too, but only very very slowly. I am getting annoyed about it which means I am starting convalescence. Knowing that does not make me any less impatient.

We found two beached jellyfish. Not entirely sure if they were alive, but maybe. Do not touch.

Pink jellyfish floating in shallow water.

Anyhow, my daughter got a stick and pushed each one back out.

Which makes my heart sing.

For today’s Ragtag Daily Prompt: music.

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all things

I went to a memorial last night, for a singer.

This photograph is from 2015, a memorial sing for my father, who sang in three or more choruses here from 1996 until 2013. Actually he was raised singing and with music. My sister and I were raised singing, too.

My father and the singer we were remembering performed folk songs locally.

We sang last night. I chose a round.

all things shall perish from under the sky
music alone shall live
music alone shall live
music alone shall live
never to die

Here is a version sung in three languages.

With each new loss we remember the old ones: I miss my mother, my father, my sister. The round comforts me: all things shall perish, yet music alone shall live, never to die.