Tag: Chronic Disease

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Chronic Disease

Day 1627 and 12 Hours

I went to bed yesterday around 3:30 or so. Oops. I could barely write a post as I was struggling to stay awake at all. I did three short paragraphs and tagged it and said good enough.

A long night of poor sleep

My sleep was not peaceful or restorative but at least it was long. The night before I was up late (ok 10:30pm or so) and I struggled to fall asleep.

Alex’s birthday party on Saturday was enough to wipe me out so badly that on Sunday I couldn’t stay up past mid-afternoon. Pathetic yes but not surprising.

I recently did a big round of bloodwork and was thrilled to see my inflammation is down significantly but I have something called inflammatory anemia. So maybe a contributing factor to my exhaustion. There are a number of odd areas that need some attention especially in my endocrine system.

The Bimzelx switch is in its 4th month so almost through the loading dosing. I have had awful side effects but the code biomarkers of CRP and Erythrocyte Sedimentation Rate (ESR) are significantly improved.

I still have all kinds of weird pains and compensatory biomechanical problems but I’m feeling moderately optimistic. The next steps are around the corner. And hopefully I get more deep sleep and REM sleep before I tackle it.

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Chronic Disease Community

Day 1626 and Sleep It Off

I am coming off multiple days of in-person interactions. It has been nice to go from Costco to committees to backyard bbq.

I am tired. I intend to rest and alas because I am doing things in the moment I have had too few moments for even a brief rest. It has been a good time.

My HRV and my RHR are way down and way up respectively. I need that to reverse so I’ll sleep it off.

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Biohacking Chronic Disease

Day 1625 and Hot and Cold

I am older than my husband but only by enough (a year and change) to let me land middle aged jokes. We celebrated his birthday at Costco. We are spending Saturday grilling. We own a Subaru. I think the jig is up.

I’ve been fighting to restore my body to “factory settings” since we made the mistake of messing around with fertility treatment hormones. Sadly why our middle aged jokes don’t involve children. Our civic contributions and investments in founders tie us to our future for now

And in our ambitions to be prepared for giving that future everything we’ve got, we are doing more and more for our health.

I started an earlier as my body gave out earlier but we are both doing more biohacking. We are slowly building out a collection of treatments and devices that we hope will end as a medical spa serving our region.

The hyperbaric chamber for oxygen therapy we purchased in January l has finally reached American shores. More sauna and ice cycling might be in our future too. On a “in the red” day I’ve been known to hit my recovery with everything I’ve got. Heat, cold, and pressure can fix almost anything. Add in oxygen and we might just survive whatever the future throws at us.

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Biohacking Chronic Disease

Day 1622 and Pulsed Electromagnetic Field

On a bit of a whim, Alex bought “on the go” PEMF Infrared Mat from HigherDOSE.

This is the year of acquiring mechanical intervention medical equipment for us.

Yes as biohackers we trial a lot and some of it is less woo-woo than others. Treatments like hyperbaric chamber oxygen therapy have significantly more clinical data than say pulsed electromagnetic field treatments.

It seems easier to send electromagnetic waves at different frequencies than create a sealed oxygen chamber but consumer is weird and the military and elite athletics tested HBOT whereas mere hippies played around with PEMF.

A temperature setting swaps for 4 separate vibration settings Delta Waves, Theta Waves (Schaumann Reponse, Alpha and Beta Waves

So it’s qualia only here on the good vibrations but I am excited to try it out. I can’t exactly feel the vibrations unlike in other clinical settings where I’ve experienced much more intense (it’s measured in gauss or Tesla) but infrared warmth is a nice experience even if the vibrations don’t do much. But I will report on it.

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Biohacking Chronic Disease Medical

Day 1619 and What A Headache

It’s a gorgeous breeze June Sunday in Montana. It’s the sort of day where you go to your favorite bakery for an exotic little pastry, maybe get lunch from a favorite restaurant and then go for a hike or a bike ride to marvel at the majesty in wonder.

As I am working through a new physio routine to improve compensatory pain in my trapezius muscles I was a little nervous. I wanted to adequately test that I’d found new corrective instincts without overdoing things.

I walked a favorite two mile circuit with a stead inclined of hills that eases back out into the flat valley. I felt terrific. The sun was shining but the breeze kept it cool. Truly paradise on earth.

And then within an hour or so I got an awful headache. Had I failed at reworking my compensation so badly? I checked fascia and muscle points and found my shoulders relaxed.

Then I checked my upper cervical spike and yelped. I had swapped one compensation for another and gave myself a killer headache in the process. But I didn’t have the same pain pattern or headache type and that is a win.

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Biohacking Medical

Day 1617 and Trap Queen

I am struggling with some biomechanical issues in my upper body that are intersecting poorly with the inflammation of my ankylosing spondylitis and psoriatic arthritis.

The upper fibers of my trapezius muscles are killing me. I presume I have some soreness and pain as I’ve been incorporating a new slow progressive full body workout program. But a little digging is making me reassess that conclusion.

Via Physio-Pedia

I’ve been patiently working the problem of my inflammatory issues for literally half a decade and yet I am regularly finding new information thanks to the wonders of deep research products.

Somehow I had never really researched enthesitis despite it being a fairly core symptom in my case presentation of spondyloarthropathies.

It is an inflammation where tendons and ligaments attach to the bone and I have it something fierce in my intercostals and trapezius muscles.

There are many other areas where enthesitis can occur, he says, including the area where the ribs meet the breastbone, the back of the head where it meets the neck, and in the spine in the area closest to the skin. Creaky Joints

It’s possible current pain not delayed onset muscle soreness at all. It’s enthesitis. I don’t know if my new IL-17 inhibitor is working as it should but the strain of my new workout regimen is just a part of a wider issue in my condition. I’ve got a deep dive running on exercises but right now I’m going to take a muscle relaxer (magnesium) and lay down.

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Medical

Day 1615 and Ounce of Prevention

I had a preventative care appointment at the doctor today and I came away from the experience wondering why I bothered.

I felt like a fool for checking on something before it had become a problem. It was merely a concern and no answers could be found without a substantial escalation in investment and time. Which I chose not to dod.

I will still get a bill whether it’s 90 seconds or 90 minutes which I do understand. But does it have to be so “escalate to maximum” or “just ignore it” as the poles of preventative care? Can’t it be more of a spectrum of options? And because “fuck you that’s why” I have no more certainty on the problem than when I started.

And that’s not how I want to experience the care and maintenance of anything under my care in my life let alone my body. Our house, our relationships, our business, our car, heck our chickens deserve better than “don’t know why you bother” care. I bother because I care.

We have a home maintenance sheet excel, a seasonal rotation system for disaster supplies, and an inventory management system for key household goods.

Yeah, we are that kind of family. My husband has opinions on label makers. I have strong opinions on sweater brushes and leather are.

An ounce of prevention is worth a pound of cure.

Sure that’s a very Mary Poppins kind of approach to life but I think it’s a worthy one. I want to live a life where I am responsible to my own life.

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Aesthetics

Day 1604 and First Weekend of the Season

It is so beautiful today in Bozeman it almost doesn’t feel real. It’s warm but not hot. It’s sunny but we have fluffy clouds breaking up intensity. Cool breezes waft in and out without ever really turning to wind. I hope our entire summer has this weather.

Because of the holiday weekend the town has fully switched into “seasonal” mode from daily New York flights to way more availability at restaurants and service. One of Alex’s friends from college is headed into Yellowstone with his whole family from grandparents to kids.

Mountain towns make as much money in the summer as they do in the winter so you always wish for fluffy snow and cool clear summers.

The snowpack is smelting, the grass is green and the sky is oh so blue

While Yellowstone is worth the travel, I appreciate being able to work and hike all flavors of public trails from city to state in Bozeman.

On days like today I want to fully throw myself into a Bryan Johnson super adherence biohacker as I want to be able to enjoy as much of our summer as I can outside.

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Chronic Disease

Day 1599 and Sadly Cold

I would love to have something to say today. I have a migraine. My circulation seems odd. I’ve got on 2 pairs of wool socks on, two layers on top and I’m underneath two down blanks. And I’m still cold.

Complaining about one’s body is such an unappealing habit and yet when the pain comes for your attention it has the gravity of a black hole.

I don’t want to be a bore. I fear every time I am trapped in a bad bodily cycle I am boring myself and others. It’s been six years since I was diagnosed with an autoimmune condition and so much of it has been chronicled here.

And yet no matter how much I throw at health and wellness I still find myself cold, sad, hurting and without any kind of cure.

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Biohacking Chronic Disease

Day 1598 and Routine in Chaos

I have been contemplating “an ideal routine” as soon as I felt the pressure of showing up for first grade. How to manage the energy the outside world requires from you while making sure you have done everything possible to manage your body to produce adequate energy.

Morning routines, what’s in her bag, every day carry, and optimal packing strategies all derive from a need to see how others are coping with the demands of life. You can aspire to various ideals of fitness, nutrition, style and parenting if you could just get the right routine with the right tools. Right?

I’m aspiring to restart learning new toolsets for building …everything. From design to marketing software to muscles to my hormonal profile. Building the life you want is deceptively close if you can manage yourself.

Life feels malleable at the moment. And who is going to stop me? Maybe I accidentally fix a problem for myself and find I’ve got a tool or insight that might benefit you. The chaos of old ways fall apart means new routines and folkways must be built.

I don’t want to betray myself by overreaching and pushing as I am so often finding hard limits the hard way. I like to go hard and rest. But reality has become so much less reliable that I wonder if I must compensate even more for the chaos with steadying flows of my own.