Tag: Pain

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Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.

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Medical

Day 950 and Good Teeth

I’ve always quite liked dental hygiene. Twice daily brushing and flossing after every meal has always been one of those daily habits for me. I do not compromise on it. You’ve probably seen me with a toothpick after a meal. Taking care of my teeth is just engrained into my routine.

It would seem a lifetime of good habits pays off. I’ve only had a handful of cavities (I think two) and no issues with grinding, my gums, or other periodontal problems. My teeth have been so chill that when I was broke I went to the NYU dental school for care. I learned a lot and it was cheap.

I finally found myself a dentist in Montana and went in for an intake and a cleaning today. It has been about a year since my last dental visit. I came through with a clean bill of health. They took a bunch of X-rays and fancy imagery and nothing looks problematic. Flossing really does pay off it would seem. You should do it!

I am happy my teeth are in good shape but slightly pissed. You see last year a dentist in Boulder did her best to convince me that I needed a root canal. A lifetime of good dental health and I’m being pushed for oral surgery for a tooth that didn’t even hurt.

I said I didn’t feel any pain or discomfort so I wasn’t inclined to get surgery prophylactically. She seemed a bit pissed. She did her best to insist I go see an oral surgeon. I demurred. I did not want an additional medical issue that was voluntary.

Now a year later, a dentist with much more advanced equipment could not locate the issue and told me I’ve got nothing to worry about. Maybe she got it wrong? He couldn’t quite be sure what she saw as his imagery and X-rays didn’t show any issues. I had no sensitivity or nerve issues so it’s possible she got it wrong.

We have a tendency to believe credentialed professionals like doctors, dentists and lawyers. They must know right? I’d never have considered saying no to a root canal before last year but at the time I just didn’t feel like I could handle an invasive procedure. And thank goodness I pushed it off.

And it does turn out that dentistry as a profession has issues with unnecessary treatments and fraud. This investigation in the Atlantic discusses how prevalent unnecessary treatments are in America.

Had I not turned down a root canal last year I would have subjected myself to something I didn’t need. Given my chronic health issues, you can imagine that I’m not eager to spend money and time on treatments I don’t need. Particularly ones known to be painful with the potential for side effects like infection. So be careful out there. And I hope you have a dentist like mine in Montana.

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Chronic Disease Emotional Work

Day 931 and Open Calendar

I am about to sunset a long-standing weekly appointment that has been on my calendar for literally years. And I was surprised to discover how much getting back that time made me happy.

The block on my calendar was for something I very much loved doing and valued highly, so the sheer joy was unexpected. But as it turns out I loathe having a consistent obligation on my time.

This isn’t to say that I don’t like being responsible, reliable, or on time. But rather I like knowing if something comes up that I have some flexibility. And I don’t like to disappoint people by needing flexibility.

My suspicion is that this represents some lingering guilt I have about having a chronic disease. While I rationally know that I did nothing to deserve being sick, I do carry a self limiting belief that being sick is a weakness.

I’ve always prided myself on being a “mind over matter” person. I’ve shown up to countless events, meetings, pitches, and other obligations while in pain. I’ve been known to repeat “Michael Jordan, Game 5” as a mantra to remind myself that I can perform in even the worst physical circumstance.

Michael Jordan famously played and won with the flu. And the logic in my mind was surely I can do the same when something is on the line. So I always have. If someone expects me to show up and perform I do it even if I am struggling.

But as my season of no has begun I think it’s time I stop romanticizing my capacity to work when sick. I love having my time back on my calendar and I love the flexibility that I have to work whenever and wherever I want.

Maybe some people would chose to work less under these conditions. For me though, having more flexibility in when I show up means I’ll find even more time to put into my work. Because I love showing up for me. And sometimes it’s easier for me to show up when it’s not a damn calendar block.

Categories
Medical

Day 928 and Season of No

I feel like I’ve been caught in a loop of shitty things that has me in a “fight or flight” pattern that I can’t find a way to release myself from.

I’m having a very “if it’s not one thing it’s a other” summer. And it has to stop here. If I don’t let it all go I’ll be miserable and it will have been my own choice. I’ve got a choice to prioritize the well being of myself and my family.

I’m writing this at the oral surgeon’s office as my husband’s wisdom teeth removal is today. I’ve been given several lectures on how challenging his recovery will be as he’s so much older than the ideal extraction age.

Teenagers have a lot better bounce back rates than even late thirty something apparently. Fingers crossed being fit and healthy counts for something.

I’m stressed by the prospect of prioritizing myself and family. I like being open and available to the universe.

So I’m just going to start saying no to more and more things until I feel like I’ve got myself out of this misery loop. My priorities will remain my family, my fund, my founders and myself. Probably not exactly in that order but pretty close.

Categories
Biohacking Medical

Day 927 and Standard Operating Procedure

I’m going to be nursing my husband through oral surgery recovery this week. He’s run out the clock on wisdom teeth and they all need to be removed.

We will miss a few obligations this week but such is the nature of medical need. Necessity doesn’t always come when you want it. If we don’t do it this week we’d be waiting till November for the next appointment. Such is getting medical care in this day and age.

I’ve been in a bit of a frenzy preparing as I myself have some medical issues that are chronic so if we are both fucked up physically it gets a little tricky to manage routines. Particularly because we live a little bit country these days in Montana.

I’ve gone down a deep rabbit hole of procedures for surgical recovery. I looked up standard operating procedures for inflammation and surgical recovery from every source I could find. I consulted with our doctors. I looked at risk factors.

You’d be surprised at how optimal procedures differ from the standard median recommended ones. The fear of overprescribing pharmaceuticals runs pretty rampant even when it’s clear that some protocols would be beneficial like say post surgery prophylactic antibiotics. The NIH, Mayo and Cleveland Clinics agree it’s a effective way of preventing complications related dry socket. The condition can turn into a painful infection that is relatively dangerous if it gets out of hand given it’s proximity to your brain.

But we can’t make an antibiotic standard operating procedure as it’s not technically necessary. Especially since we have prioritized using less antibiotics overall as a public health policy for the wider social good of preventing antibiotic resistant strains of bacteria. Good of the many versus good of the one. I’ll admit I’d be inclined to say that my husband deserves the Spock treatment even if it is illogical.

I’ve written out an hourly schedule for the recovery procedure I intend to follow. I won’t post it all here as it’s obviously not in my best interest to disclose it. It’s involved and intended to reduce inflammation and have the maximum pain management that is responsible so that my husband’s body can recover quickly with no unnecessary stress.

Proteins powder, bone broth and soft foods

It seems as if a lot of recovery comes down to simply retaining adequate electrolytes balance with enough liquid calories. You have to meet a macronutrient balance that gives enough protein to knit the tissues and not make the body think it’s resource constrained. Which is harder than it sounds when you can’t chew or even suck on a straw.

I’ve got a number of techniques to leverage from lymphatic drainage massage to the woo woo options to reduce stress and promote recovery and I intend to use all of them. And yes I’m available for nursing.

Categories
Biohacking Community Emotional Work

Day 918 and My Attention Budget

I wrote about the realignment of attention budgets as social media experiences a walled garden fear response to artificial intelligence’s looming tsunami of low cost content.

I myself am going through an exercise of ruthless prioritization of my own focus and find. As in any portfolio, write downs are inevitable. It’s easier to write something down when it’s money. Investments of time, energy, social capital and presence are much harder to let go. A sunk cost never boils? A watched pot never catalyzes? Sometimes a group or a movement chooses to remain outside their power.

I have so much less capacity to be present than I’d like. Others may prefer to be distant and still shower up but I find I’m happier with boundaries that are firm and great remove. That means when I do show up you have my full and intimate attention. It’s only right.

You have to prune in order to blossom. One commitment I’m excited to see blossom is the exceptional work of Jonny Miller. He and I will be hosting a Cultivating Calm Workshop for founders and venture capitalists interested in how to apply nervous system regulation techniques to their startup journey.

August 10th at 11am MTN join myself & Jonny Miller for cultivating calm.

As more of us rise up the acceleration curve of artificial intelligence and must maintain our capacity to sense-make, this will help your mind and body function in a chaotic world.

I myself have taken Jonny’s Bootcamp, intend to be in the next cohort (my code JULIE gets you a discount), and I’ll be sponsoring a founder to attend the September cohort so consider this a chance to see if these tools are right for you. My revealed preferences tell you what you need to know.

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Emotional Work

Day 903 and Life Goes On

I just didn’t want to write today. I am all over the place with pain and grief even as the world keeps on spinning. I lost someone very important to my family yesterday. A matriarch if you will.

My biometrics are a mess. You can see the stress spiking as I got on calls to both do business and then also discuss the business of life afterwards. Because life does indeed go on. My Whoop said I had 108% more stress today than a typical Thursday if you want to know what grief does to your stress levels.

My Whoop detected grief

I have written so much today on so many other mediums. I’ve texted and direct messages and tweeted and probably wrote several novellas in various group chats. But I just couldn’t make myself write my essay here. So like I would on any other day, I’ll give my myself permission to carry on. I’ll tag this, Tweet it and go to bed and hope I can do more tomorrow.

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Emotional Work

Day 902 and The Singer Lasts A Season But The Song It Lasts Forever

One of the matriarchs in my life died this morning. I am devastated. Because, of course, you are devastated when you lose someone you love. To not know the pain of mortality is to not know your own humanity.

We spend so much of our lives in the art and literature of the human condition that we can sometimes forget we are actually living it out right now every single day.

Your own life is just as rich a tapestry of meaning anything Dostoyevsky ever wrote. Losing someone close to you who really lived their life occasionally gives you sparkling moments of crystalline clarity on what matters.

All of living is struggle. We find the boundaries of the world through trial and error. We find each other as we negotiate the rhythms of each other’s lives.

The old cunt had the balls to die on the summer solstice. She was extremely Swedish so on aesthetics grounds I feel happy about her moment of passing. Midsummer. What a witchy thing to do. I love it for her even as I am weeping.

The last thing she said to me was so poetic it almost makes me angry. She told me that she had repeated herself a lot across the years. I said I knew and I appreciated that she’d helped me learn the tunes by repeating the songs with me even as I stumbled to commit things to memory.

Her response? Now that you have sung the melody with me, you can sing it on your own. Which is a very beautiful good bye worthy of anything I’ve ever read in a book or seen on screen.

But also the fucking temerity of that woman to deliver folkloric wisdom on the way out. Our elders know a thing or two.

The singer lasts a season long, While the song, it lasts forever

Unknown (to me at least) folk song

May your solstice be as bright and true as mine. I will be trying to carry this tune on my own and if you like I’ll try to teach you to sing along with me. May we have a chorus of love songs on our longest day in the sun.

Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Chronic Disease Travel

Day 889 and Soul Delay

A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson – Pattern Recognition

I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.

I’m itchy and in pain and simply going about my routines despite it all. Rhythms and processes run my life because I’m a traditionalist. What you do every day is what you become.

Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.

So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.