Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

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.

Pediatric autoimmune neuropsychiatric syndrome

Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.

This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.

My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets

1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.

2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.

3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.

How to fight this?

It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.

1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.

2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.

3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.

4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.

And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.

We will see if I make any headway at all.

___________________________________________

For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

Why care for addicts?

I posted this in November, 2015. I am reposting it.

_________________

Why care for addicts?

Children. If we do addiction medicine and help and treat addicts, we are helping children and their parents and our elderly patients’ children. We are helping families, and that is why I chose Family Practice as my specialty.

Stop thinking of addiction as the evil person who chooses to buy drugs instead of paying their bills. Instead, think of it as a disease where the drug takes over. Essentially, we have trouble with addicts because they lie about using drugs. But I think of it as the drug takes over: when the addict is out of control, the drug has control. The drug is not just lying to the doctor, the spouse, the parents, the family, the police: the drug is lying to the patient too.

The drug says: just a little. You feel so sick. You will feel so much better. Just a tiny bit and you can stop then. No one will know. You are smart. You can do it. You have control. You can just use a tiny bit, just today and then you can stop. They say they are helping you, but they aren’t. Look how horrible you feel! And you need to get the shopping done and you can’t because you are so sick…. just a little. I won’t hurt you. I am your best friend.

I think of drug and alcohol addiction as a loss of boundaries and a loss of control. I treat opiate overuse patients and I explain: you are here to be treated because you have lost your boundaries with this drug. Therefore it is my job to help you rebuild those boundaries. We both know that if the drug takes control, it will lie. So I have to do urine drug tests and hold you to your appointments and refuse to alter MY boundaries to help keep you safe. If the drug is taking over, I will have you come for more frequent visits. You have to keep your part of the contract: going to AA, to NA, to your treatment group, giving urine specimens. These things rebuild your internal boundaries. Meanwhile you and I and drug treatment are the external boundaries. If that fails, I will offer to help you go to inpatient treatment. Some people refuse and go back to the drug. I feel sad but I hope that they will have another chance. Some people die from the drug and are lost.

Addiction is a family illness. The loved one is controlled by the drug and lies. The family WANTS to believe their loved one and often the family “enables” by helping the loved one cover up the illness. Telling the boss that the loved one is sick, procuring them alcohol or giving them their pills, telling the children and the grandparents that everything is ok. Everything is NOT ok and the children are frightened. One parent behaves horribly when they are high or drunk and the other parent is anxious, distracted, stressed and denies the problem. Or BOTH are using and imagine if you are a child in that. Terror and confusion.

Children from addiction homes are more likely to be addicts themselves or marry addicts. They have grown up in confusing lonely dysfunction and exactly how are they supposed to learn to act “normally” or to heal themselves? The parents may have covered well enough that the community tells them how wonderful their father was or how charming their mother was at the funeral. What does the adult child say to that, if they have memories of terror and horror? The children learn to numb the feelings in order to survive the household and they learn to keep their mouths shut: it’s safer. It is very hard to unlearn as an adult.

I have people with opiate overuse syndrome who come to see me with their children. I have drawings by children that have a doctor and a nurse and the words “heroes” underneath and “thank you”. I  have had a young pregnant patient thank me for doing a urine drug screen as routine early in pregnancy. “My friend used meth the whole pregnancy and they never checked,” she said, “Now her baby is messed up.”

Addiction medicine is complicated because we think people should tell the truth. But it is a disease precisely because it’s the loss of control and loss of boundaries that cause the lying. We should be angry at the drug, not the person: love the person and help them change their behavior. We need to stop stigmatizing and demeaning addiction and help people. For them, for their families, for their children and for ourselves.

you know you are hypoxic when

…..I keep thinking of new ways to nearly strangle myself. I keep thinking that I have hung up the oxygen tubing on every possible thing I could hang it up on. But no, this was a new one. At least with this one I did not lock my car keys in the car. And even if I did, I can take the nasal cannula off. There is that moment of panic: AUGH I AM TRAPPED, but I am not really.

Today’s blog is especially for B who is not trapped.

Have a wonderful Saturday.

the virtue of the disconnect

the virtue of the disconnect
learnt early
as a child

they say we are broken
wired wrong
enduring horror

he wakes at night
sleeps lightly

what was your childhood like?
how did you sleep?

it was not safe
we had to get up
leave in the night
gunshots

you survived your childhood

yes, I did

sleeping lightly saved you

yes, it did

you could rewire that
it takes a lot of time
to change the childhood wiring

or you could just
be ok

with sleeping lightly

dream about privilege, access, and water

For the Ragtag Daily Prompt: dream.

I dream in technicolor with smells, sensations, sounds, all senses. So much so that sometimes I worry about what is happening in the dream and what I should do about it. Then I realize it is a dream.

Other times I know right away that it’s a dream. This one I knew was a dream and it’s closely connected to our reality.

This dream is from August 2018.

I am in a library. There is an archive. I am not allowed in the archive.

There is a man. He listens to me sometimes, but mostly he prefers that I listen to him. He listens less and less as time goes on. He is interested in certain topics, but he likes to do the talking. He doesn’t like or agree with my opinions and prefers that I am silent.

A woman arrives. She is very powerful. Dressed in white, robes, goddess like. She is as tall as the man. They talk and he goes into the archives with her. I am jealous and resigned. Not sexually, but I am just resigned to males coming first, more of them have access to the archives, they expect the attention first, they are rewarded for speaking up where I would be punished for the same behavior. I am sick of it.

I have a question for the woman. I wait. I am sitting on a tall stool with a long desk. There are two chairs to my left, empty, and people in the chairs to my right. There is a carved wooden screen walling the other side of the desk off: on the other side are the archives.

I have water. The water is in a bowl. It is to drink and is nourishing and refreshing and it is beautiful too, with herbs and an island of moss in the center. I have drunk enough, and wash my hands in the remaining water.

They come out of the archive. The woman sits by me and the man next to her. I ask my question when there is an opening. She is interested and will take me into the archives. The man is not interested in my questions, as usual, and he leaves. The woman asks for some of the water. I explain that I have washed my hands in it. More people are coming to talk to her. She pours some into her bowl. I am afraid she will be distracted by the people and drink it. I go to get her clean water. I need a pitcher. There is a wall of glass front cupboards with many sizes and shapes of glasses. I get down a large one, but it is very ornate and delicate. I want a plain pitcher but I also want to bring her the water right away. I hesitate, looking for something large and plain.

I wake up.




sky

For the Ragtag Daily Prompt: slapdash. I can’t think of a photograph of something I want to call slapdash. It feels judgemental today, unless it’s something of mine, and that feels vulnerable. And then I start thinking about the sky…..

sky

Is this a careless sky?

Were the angels in a hurry when they painted it?

Did the clouds come out as heaven wanted?

There is nothing slapdash about the sky.

admit deny

For mindlovemisery’s prompt: opposing forces. The prompts are admit/deny and presence/absence.

The pairs bring up my current sadness right away. I am struggling with the realization that we have a pervasive legal substance that works at the opiate receptor, is all over the US, and I have to send out urine tests for ALL of my chronic pain and opiate overuse and anyone on any controlled substance. You say, “but it’s legal”. I say, “Overdose and death risk. I can’t ignore it.” Here is the resulting poem.

admit deny

admit to yourself you deny your addiction
the presence of the drug means the absence of the one I love