Game ball

Warning: this post contains some time out words.

How do I process the game you played?

I am the subject of the game.

Or the victim.

Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.

You have tethered a honey badger to oxygen by playing a game.

I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.

And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.

You will need a new football. To play with.

I don’t envy that person.

The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.

I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.

Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.

My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.

It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.

I am so glad I am not you.

I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.

Ick.

Meanwhile, the oxygen is portable.

I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!

This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.

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.

more grief and loss

Well, that’s the way it is.

The picture is from Lake Matinenda in Ontario.

you know you are hypoxic when

…singing. Singing on oxygen is a challenge. Why? Well, because I am TRAINED. I am trained to breathe through my mouth, slowly filling my lungs, for the next phrase. I don’t breathe through my nose because that is noisier, might make a sound during a rest.

No, really. Singers and conductors think that way. PERFECTION is not achieved but we sure have fun trying.

So if I breathe through my mouth as trained and ingrained, and the oxygen is coming by nasal cannula….

….I am goofy and hypoxic by the end of the song. WHY do I feel like I might fall over, I think? WHAT the hell is the matter with me? OH. I HAS NOT BIN BREATHING THE GOOD OXYGEN STUFF. Facepalm. Nosebreathe.

But it’s pretty ingrained. I keep forgetting.

The good news is I feel WAAAAY better. My lungs don’t feel like someone stuck a burning torch in them any more. It hurt for six weeks, every time I sat up or stood up, the muscles of heart and lung HURT. I knew it was my heart but I also was pretty damn sure it was not coronary artery disease and it wasn’t congestive heart failure. That day I went to the ER, normal labs and echocardiogram even though it hurt like shit. I do wish the ER doctor had thought to walk me. He would have put me on oxygen then and I would have gotten better faster. And then I think of 2014 and 2012 and 2005. I didn’t think of it and neither did ANY of my doctors. I did USE oxygen in 2014. I had my father’s tanks because Evil Lincare had kept delivering them even when my father had a concentrator and so there were 16 or 18 full size oxygen tanks in his small house which is a huge fungking fire hazard, those asshats.

Now Lincare is delivering to me and under much improved management. I think the man who delivered it WAS management. He said yes, they had some shady and inappropriate behaviors in the past but he has been KICKING BUTT AND TAKING NAMES and they aren’t going to do that shit any more, not with him in charge. I liked him. Thank goodness Lincare is being run ethically.

I have pulmonary function testing today. I think that will be abnormal. However, I am enough better that I may no longer qualify for oxygen. In which case my insurance may try to refuse to pay for it. Oh, goody, a totally legitimate fight and they will be darn sorry if they try to refuse the oxygen. Mr. or Ms. State Insurance Comissioner! CEO of Insurance! Board of the Insurance Company! Poor sorry little rural family practice doctor, now disabled from her clinic for her fourth pneumonia and ya’ll refusing her oxygen when she has no income because her disability doesn’t kick in until she’s been sick for three months.

Heh. Bring it on. Got my tai kwan do, kinda rusty, my katana, a yard long rusty pipe wrench… bet I get coverage for the oxygen.

Meanwhile I either gotta stick the nasal cannula in my mouth when I am singing or bloody well breathe through my nose…..

you know you are hypoxic when….

You know you are hypoxic when you stand there sniffing, wondering why the on demand oxygen isn’t working. It’s supposed to supply oxygen when you sniff. Let’s see, it is turned on to two liters…hurry, or I will be late for covid test… what the heck is wrong?….. oh….

tubing

The oxygen tubing follows me everywhere.

I have a large concentrator for inside the house. There is long green tubing that I plug into the pale tubing that goes to my nose.

When I go upstairs, it’s a bit complicated. I have to unplug the pale tubing and plug the upstairs long green tubing into the downstairs long green tubing and the other end into the pale tubing. Then untangle it and I can walk around upstairs and still breathe.

To go outside, I have small cannisters. Unplug from the big concentrator, plug into the small cannister, turn the concentrator off, turn the small cannister on. Get purse and whatever the heck else I am carrying. Try to remember if the small tank is close to empty. I am carrying an extra small tank in the car. I have to turn the tank off to change the respirator, then bleed the remaining pressure, then take the respirator off. Yesterday I put the respirator on upside down. The tank hissed at me like a terrifying snake. I have warning signs in my front and back windows now: do not smoke, oxygen in use.

I took care of a man in the hospital overnight once who HAD smoked on oxygen. The ER doc called me to admit him. “He lit his oxygen on fire with a cigarrette.” “And how bad is he?” “We need to monitor his lungs.” “IF HE HAS LUNG BURNS SHIP HIM TO SEATTLE, HELLO!!!” “Well,” says the ER doc, “Ok, he’s probably fine, just burned his nose. But I am not quite comfortable sending him home.” “Oh, well, then, geez. Okay, whatever.” Wimpy ER doc. I didn’t mind once he was honest. The patient admitted that he did not want to do THAT again and yes, his nose felt pretty burned.

No smoking at my house. I am not tempted to smoke ANYTHING. When I was twelve, I smoked pretzels with my cousins and sister. They do not stay lit well but we laughed a lot. It was really fun.

I don’t have enough green tubing for the basement. So there are monsters and I don’t go there any more. No, I can use one of the portable cannisters to start a load of laundry. I am supposed to only use the portable cannisters when I leave the house. Used one yesterday to go in the front yard and garden. Stomped the spade in, levered up the grass. Wait and breathe. Wait. Ok, stomp the spade in the next place. Wait and breathe. Wait.

I get more oxygen on Wednesdays. Tomorrow. If I BEHAVE then after a month, I will get a small concentrator that I can walk around with. Then I won’t have the bloody tubing tail. I am seriously looking forward to that. I still will have the tail some of the time because the concentrator will have charging and a battery life and AUGH MY OXYGEN RAN OUT WATCH OUT WORLD I AM HYPOXIC AND DANGEROUS!

I trip over the tubing and it gets tangled and I get caught on things and it yanks at my head. My dance skills and balance are way better right now ON oxygen than OFF it. I am not nearly as neurologically whacked out when I have the oxygen. Makes me wonder… I don’t feel nearly as much OCD/ADHD/oppositional defiant. Well, ok, the oppositional defiance is rather baseline for me.

Makes me impatient, but then, whatever. I will still get stuff done. You are only as disabled as you decide to be and this will barely slow me down. Hope I get off oxygen eventually, but that is not clear. With repeat infections your lungs can scar. Hope not. Time will tell.

And donate to something to get oxygen to India. I can hardly bear to look at the news about it. I felt so awful with just mild hypoxic, that went undiagnosed for 5 weeks. Dying of suffocation is not fun. Donate.

chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


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The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

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I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

mystery

I am feeling MUCH better on oxygen. Guess I have needed it for the last 5 weeks. It made me goofy to be hypoxic. It is nice to be able to THINK again. I wish that I had figured it out sooner. Presumably the ER doctor was not hypoxic, so I wonder why he didn’t test me. I told him my heart rate would jump to 124 when I got up and walked but he must have thought…. I have no idea. Now that I can think again, I think he should have walked me and tested my oxygen level.

Well, hopefully I have not lost too many brain cells. It’s nice to be able to find words again. They are not missing any more. Firing on all cylinders.