This is a blog about the experience of living with Bipolar Disorder. The story of what it is like to live with a disabling mental illness, day by day and to provide a safe and welcoming space for all who wish to participate, whether by comment, contribution, or simply silent reading.
Ketamine. I had five treatments intravenously, dosed at 0.5 mg/kg initially. The plan was to gradually increase the dose, but my body didn’t like that (weird very uncomfortable muscle spasms). So we stayed with the initial dose.
The treatments themselves turned out to be more of a chore than a vacation. My veins suck because, connective tissue badness. They are these tiny spidery things that instantly explode when touched by a needle. Therefore, I was touched by many needles in order to get five IV infusions in, and now, every halfway decent vein I had is a purple blotch, with yellow and green accents. Beautiful. Hope I don’t need any emergency–type treatment any time soon, because I donated all my veins to Vitamin “K.”
But what about my brain? You inquire. After all, she’s the star of this shitshow. The only reason I would go to such extremes of drug-taking and expense (did I mention the expense? Oy vavoy).
Let’s see…I can’t really judge how I feel by how I feel…yes, I know….really the only way to tell how I’m feeling is to look at what I’m doing, because aside from the affective part of the affective disorder, my main symptom of depression is the one where I turn into, like, a rock, moving only under extreme duress, kind of like what normal people do when they’re asleep, except in my case, I’m not asleep at all. Ever. Just. Not. Moving.
I’m still kind of lethargic, but my appetite is back. Apparently I was too depressed to notice that my appetite had gone south. I had lost over 10 lb, but my residual anorexic self was sluggishly applauding that. She’s now disgusted that I’m making omelettes at 9 a.m., as opposed to breakfasting on frozen Trader Joe’s Indian food at 5 in the afternoon. I’m moving around, noticing the extreme layer of desert dust that is covering absolutely everything. That’s a sign, noticing things. Getting up and doing something about it–that’s still in the realm of the theoretical, but at least the notion does flit through the cold molasses of my mind.
I was really hoping that the irritability part would go away. It has abated somewhat, but Atina the Wonder Doggess is still keeping an eye on me in case of explosions. I feel bad, because I grew up “walking on eggshells” around my mother, and I hate it that I give my loyal pup reason to do the same around me. I really feel like climbing into a hollow tree trunk and staying there for the rest of my assigned days.
So I would say I’ve had a partial remission. Better than none! We’ll see how long it lasts. I’m supposed to have another treatment in a couple of weeks, but I don’t yet know how or where. One minute at a time.
“Just checking to see if you’re OK…you haven’t been posting on your blog…”
I really appreciate it! I know as well as you do what it can mean when a generally motor-mouth blogger goes silent.
You’re right. I feel terrible. I can’t think. My imagination, usually fertile, is…somewhere. I don’t know where. I don’t know anything. I’m in The Pit. At the bottom. At least I hope it’s the bottom. I certainly can’t see daylight. If I go any deeper it will be the La Brea Tarpits.
In fact, that’s what depression feels like: black and impossibly thick and sticky. The harder I struggle against it, the more stuck I feel.
I tell you, if my dear Doggess did not need me….but she does. She is dying, very very slowly, but very surely. Each day brings some new sign of it. And there is nothing to do but to swing with it…and I don’t feel like swinging.
Brings back bittersweet memories of my father’s lonnnnnng descent. Years of enjoying him while he slowly faded, then the horror of the final months.
So I spent some time researching the latest treatments, beyond the drugs that have never worked or had side effects that laid me flat. And I found something I’d never tried before: ketamine.
Now, ketamine is a drug I’ve never had the slightest inclination to try. I saw plenty of its effects when, as a medical student in the 1980s, I had the unpleasant task of sitting with babies as they emerged from ketamine anesthesia. My job was to keep them from eating parts of their own bodies. For some reason, ketamine does that to infant brains: makes them try to gnaw their paws off, like an animal caught in a leghold trap. So my impression of the drug was somewhat colored.
Likewise, I’ve had my share of human teenagers stoked up on K in the emergency room. Not a pretty sight. I have not yet figured out what the draw is.
But I’m so damn tired of being depressed, I’ll try anything. There’s a ketamine infusion center in Tucson. I read up on the stuff and its use in depression treatment. It looked hopeful. I called.
The intake process took a week. I liked that. It wasn’t like, Oh yes, come on in, we’ll hook you up and take your money. I had to take numerous inventories: depression, of course, and personality, and a screen to rule out psychotic illnesses. Three different interviews. And in the meantime I went on Medline and read the handful of papers I found. I asked my questions, was satisfied with the answers I got.
And yesterday I had my first ketamine infusion.
I was petrified, but I’m so sick of being depressed that anything else, no matter how bizarre, felt like a good idea. I can’t be dead right now, because I can’t do that to my Doggess. So I marched into the infusion center and allowed myself to be hooked up to an IV pump full of the evil drug. I resigned myself: at least I’m Doing Something. If nothing else.
They put me in a comfy recliner in front of a TV screen that played continuous, seamless nature films. It reminded me of the endless loop of bird videos a friend of mine plays for her cat when she goes out. I synced my phone with a Bluetooth speaker and cued up a playlist I’d made for the purpose: dreamy Sikh chants. If I’m going to trip out, I want it to be holy.
The stuff flowed into my veins and I breathed, wondering what was going to become of me. I held no expectations. How could I, when I had no idea what to expect? I hoped that they would watch closely and not let me gnaw my paws off.
A warm, cocoon-y feeling enveloped me. That was all right. It was comfortable, safe, relaxing. OK, I can go with this. They asked me how I was feeling; I told them this. They turned up the rate.
The nature films flew over the Grand Canyon, Bryce Canyon, Monument Valley…all places dear to my heart, and right here in Arizona. The holy music spoke of beauty. The nurse (a man) wondered how I had chosen just the right music for the film….really.
My reptile brain flashed back to 1970, such a year full of terror and beauty, flashing like the red cherry on top of a police cruiser. The many trips on LSD, mescaline, psilocybin, peyote. “Wasted on a 16-year-old,” I observed. The nurse chuckled.
It went on forever, which turned out to be 90 minutes. 90 minutes’ worth of Eternity. I hope Eternity turns out to be something like it. Incredible beauty. No pain, not from the body and not from the brain. The best vacation I’ve had in a long time.
The dose of ketamine for this kind of vacay is 0.5 mg/kg, which for my weight turned out to be 29 mg. For comparison, the anesthetic dose is 3.0 mg/kg. Yep, that would knock you out. On the brain-pain dose, I could, with extreme effort and advance planning, make purposeful movements and even speak, after a fashion. Standing up was out of the question. At about 45 minutes into the trip I needed to pee. They turned off the infusion and, after a couple of minutes, helped me/dragged me to the bathroom, where I made use of the generous handrails to navigate to the pot. Getting my clothes down was an exercise in logic. Peeing felt incredibly great. Afterward, somehow empowered by this, I enjoyed the remainder of my ketamine+ music+ visuals treat even more.
Will it work? Is there some kind of durability to the brain reset? I don’t know, and at this point I’m withholding hope/expectation for the future. The protocol at this center is four initial treatments at every-other-day intervals, followed by another one ten days out, and reevaluate after that. I’m OK to roll with it. It’s an expensive vacation, at $500 per treatment, but I can’t use the money if I’m dead, and that’s where things are headed if I don’t do Something. I sold my Walmart stock to pay for it. That’s what money is for, right? Living.
One year ago, several of us who blog in the “mental health, chronic illness and pain” sectors were anxiously asking one another if anyone had heard from Johnna, the author of the above-quoted blog. She hadn’t been heard from since the end of January. Not like her at all.
I had had a growing uncomfortable feeling that something was up. Not only was Johnna a prolific blogger and outspoken commenter, but she had texted me in January that she suspected her end was near, and she wanted information on how to execute an Advance Directive, to make certain that she wouldn’t be resuscitated if found unconscious.
I asked her if she had any relatives whom she could appoint as a Health Care Power of Attorney, to carry out her wishes if she was incapacitated. She wrote that she had a son, with whom she was not particularly close, and a sister, who she felt didn’t give a shit about her. (That’s what she felt, which is the important thing.)
A couple of months later, Johnna’s landlord broke open the door…just like in the story she had shared in one of her final posts in January, the one I’ve shared with you above. It gives me chills to read it now. It was prophetic.
Johnna was not an easy person. She told it like it was, often in the most unvarnished tones. She had strong opinions, and expressed them. She was usually right.
She was also kind and caring, as many of her eulogizers noted. If she didn’t hear from someone in her circle for a while, she reached out–sometimes in a rough-edged way, but you knew it was because she truly cared. It wasn’t superficial.
When news of Johnna’s death reached her family, they were, naturally, stricken with grief. Maybe they were stricken also with a little bit of remorse for writing her off, when she was suffering and grumpy….who knows. They did what families do when somebody dies: they dealt with her belongings, her apartment…and her body, which had lain there dead for already a couple of months before her overdue rent triggered the landlord to open the door and find it.
I read about a woman in Belgium who, having suffered alone from bipolar disorder into her sixtieth decade, managed to convince the euthanasia doctors to take her case. Her grown son, long estranged, was outraged that she would take it upon herself to go ahead and die without consulting him! All of a sudden, after she was gone, he missed his mama something terrible, and went after the doctors for neglecting to take him into counsel before sending her peacefully to sleep.
Upon reading this, my first thought was, “You stupid shit, did you forget something? When she was alive, she was just an embarrassment to you. Now that she’s at peace, you wish you could have kept her alive? For what? To suffer isolation and agony, so that you don’t have to feel guilty for neglecting her?”
As I get older and sicker the thought crosses my mind: what will they think when I’m gone? Will they be relieved? Will they feel angry that I wasn’t a normal participant in life? Or angry that I left without consulting them?
As I read my words, I realize that I don’t even know what “they” might think. My brain doesn’t work like theirs. And I’m glad.
I hope that if you’re reading this, you’ll stop and think for a moment about your loved ones who are suffering. Do they need anything? A kind word, a meal, a helping hand? Advocacy? Chocolate?
You will never regret reaching out. We can’t save everybody, but we can certainly make someone’s life a bit easier, maybe give someone a bit of happiness, by simply showing them we care.
And when they’re gone, we’ll have the comfort of knowing that at least we didsomething, rather than simply waiting to find out that their body has been discovered.
Last week I had to make a trip to Phoenix to see the cardiologist. Phoenix being the smouldering Valley of the Desert Smog that it is, I knew I’d have to be running the air conditioning non-stop, because this fancy sardine can that I live in concentrates heat like the dickens. I booked two nights in an RV park as close to downtown as I could get, figuring I’d leave Atina the Wonder Dog at “home” safely plugged into 30 amps (RVs can plug into electricity to run all their systems) while I caught a ride to the medical center. She’d stay nice and cool.
Quick recap: Atina, my 3 year old Belgian Malinois, was born without kidneys. OK, she had the physical organs, but only about 10% functioning tissue. And as she’s grown, her body has outgrown her functioning kidney tissue. Dogs, for some reason, do not do well with kidney transplants, and only movie stars can afford doggie dialysis, so Atina’s lifespan will be drastically shortened.
One of the things that is bad for kidneys is heat stress. It’s something that’s seen in humans, notably in agricultural workers, say, in California, where migrant workers are frequently affected by acute kidney failure from working in extreme heat without sufficient water. Turns out dogs are extremely susceptible to kidney heat stress. Every episode, even those that pass unnoticed by observers, kills a little more kidney tissue. And for Atina, who doesn’t have much to go on, a bad episode could mean the end.
With all of my good intentions, there was one thing I couldn’t control: potty breaks. We had to go outside. For pee breaks, not such a big deal, since Atina knows what “Go pee, quick!” means. But poop has its own timing….very few of us can conjure up a poop on command, especially on short notice (well, there are those of us who poop, like, every five minutes, but that doesn’t count.) So in spite of my best efforts to plan for minimal heat exposure, there were several ten minute treks around the impeccable white-paved park, its fields of white gravel radiating 100+ degrees in spite of the relatively chilly 95 degree day. It turns out that even these brief exposures took their toll.
By the end of the first day I started smelling old pee. I checked myself. Nope, hadn’t had any accidental leakage, so where the hell was the infernal stench coming from? Atina jumped up on the bed. Yeccch! I whiffed her fur. Oh goddess, please no. It was urea crystals forming on her skin because her kidneys have stopped excreting it in her urine. Now she is peeing pure water, and sweating pee. Soon the entire interior of my van reeked.
I quickly hooked her up to the IV bag that hangs from a hook in the van.
I put 350 ml under the skin, to slowly absorb into her bloodstream and help wash the toxins out.
The next crisis came at supper time. She flat out refused to have anything to do with her prescription kidney-diet dog food that she’s been gobbling for two and a half years. She refused breakfast too. This is no joke, as she’s already lost 15 pounds over the past year.
After two missed meals I pulled out the “sick food:” rice with chicken broth. She sucked it down and asked for more. I let her have as much as I dared to give her. Then I sat and thought about how to proceed.
The object here is twofold: keep Atina feeling as good as possible for as long as possible, and…keep Atina by my side because she keeps me alive.
That’s an old joke between me and my psychologist. When business owners ask me what trained task my Service Dog performs, I can tell them honestly: “She keeps me alive.” And it’s actually not a joke. How can I kill myself at this moment, when my Doggess has tucked my foot under her neck as if it were her sleeping puppy? She guards my life from moment to moment. In fact, hearing me sniffling a bit just now, she’s gathered up my entire lower body and is wrapped around my legs peering anxiously into my face.
So you see I must take the best care of her that I possibly can.
I thought first about getting the hell out of hot Phoenix. To tell you the truth, I thought I was going to be hauling a dead dog to my vet in Flagstaff, or maybe a dog who would need to be euthanized as soon as I got there. I thought of calling ahead, but there was no possibility of speaking without breaking out into sobs, so I put the pedal to the metal and blasted up the 80 miles and 7,000 feet of elevation to my second home town on the edge of the Coconino Plateau (my first home town is, of course, Jerusalem.)
There’s a place on I-17 coming into Flagstaff where you power up the steep grade of the Mogollon Rim, and just before it levels off, a breathtaking view of the four Kachina Peaks fills the sky. These peaks are where the Kachinas, the Holy People of the Hopi (and Navajo, under a different name), came out of the Earth to serve the People. They stand like 14,000 foot guardians over the land between the Mogollon Rim and the Grand Canyon. White people call them the San Francisco Peaks.
As soon as the Peaks came into view, Atina was all attention at my elbow, peering out the windshield. Not dead. Not a bit!
So I kept on driving, stopping to get groceries and top off the diesel tank before setting out into the Coconino National Forest to find a good spot to camp….and cook.
She loves potatoes, and yams, and rice, and cooked veggies. For protein, I add pretty much whatever I’m eating. I searched the veterinary Merck Manual and found critical information on nutrients in kidney failure, which I now use as a guide in my home hospice nutrition program. I did make an appointment with her vet to talk about nutrients and what to do when…..
We’re doing daily subcutaneous fluids now, and this has had the strange effect of taking away her sense of thirst. It frightens me that she doesn’t drink. The vet says the subcu fluids do her more good than what she actually drinks, and of course my medical brain knows that but it makes no sense to my human brain.
The temperature is a balmy 63 degrees in the daytime and in the 20’s at night. If you hadn’t seen my girl when she had a bit of kidney function, you’d never know she was sick. She’s hell on squirrels. If a squirrel comes into her perimeter, she’s off like a shot, hell-bent for the Ponderosa pine she knows that squirrel is making for.
Today she treed a bigger trophy: a lost hiker! Poor fellow, he had got himself turned around in the woods because he was trying to navigate with a dim photocopy of an outdated map and got on the wrong trail. Atina found him, though, and scared him witless by leaping up and staring into his face again and again. In the K-9 business this is known as a “silent hold-and-guard.” In the lost hiker business, it’s known as “out-of-body, where’s-the-toilet-paper!” I pointed the poor chap on his proper path and took Atina home for a few Milk Bones. I never gave her Milk Bones before (“doggie junk food”), but now that she is on hospice I don’t care. She can have whatever makes her happy, as long as it fits the ratios of protein, calcium, and phosphorus that rule her diet now.
She is the best Doggess.
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