Category: Chronic Disease

Categories
Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
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.

Categories
Chronic Disease

Day 1594 and The Creek Don’t Rise

I’m not sure where my mother picked up the slang “God willing and the creek don’t rise” but I had it regularly to suggest a thing shall come to pass a “if nature and God” are willing.

It’s it’s got a hint of Appalachia in its origin story and then tumbles over into a Johnny Cash cover of a Jerry Reed country tune (probably where my mother learned it as she loves Cash) before settling into a Spike Lee documentary about the water engineering challenges that have brought such misery to New Orleans.

It’s been pouring in Gallatin County all day. Our already high rivers are looking like they may cause troubles. Friends who fish were concerned the muddy headwaters weeks ago when I was caught in other unexpected spring showers in Colorado.

I am afraid the moisture is kicking up mold in our house. We’ve spent months remediating the problem so it weighs on me to consider the possibility. I woke up covered in hives and eczema.

I took antibiotics and Benadryl and it kept getting worse. I showered with nothing but unscented Castile soap hoping to mitigate the outbreak. That did more.

I have an event I’d like to attend this evening along with a houseguest who I very enjoy much enjoy so it frustrates me when the creek sees fit to rise against the banks that contain the river of my life.

Categories
Chronic Disease Emotional Work

Day 1589 and Disagreeable

I am in a lot of physical pain and I have been cranky about it all day. I just did not have the energy to self censor my discomfort either. I spent a lot of the day in bed popping off.

Because people are polite I only ever get rewarded for being spicy. I’m sure people harbor all kinds of uncharitable opinions about people who are mouthy, especially women. But I mostly find you can say quite a lot. Especially with your ingroup.

In fact being disagreeable is tolerated, and even celebrated, in almost all public forums. Hard truths, straight acts, unpleasant realities tend to be celebrated. Truth telling can become someone’s persona even when nothing is wrong.

But watch out for that dark path. If you care too much about broader opinions of yourself you can easily become what is called audience captured in which your persona gets adapted to what gets a response. Modeling your life as get it can go very wrong for people.

I felt for comedian John Mulaney who got typecast as the affable guy and absolutely hated being the bad guy for his various addictions and personal life complications.

In his special “Baby J,” Mulaney reflects on the burden of his public persona: “Likeability is jaaaaaaaail,” summary via Perplexity of a much better substack piece

In some ways, playing to type is just cognitively easier for everyone. A social contract if you will. Being able to show more than one side of yourself shouldn’t be shrugged off as people pleasing nor is being disagreeable always a sign of bad temperament. Humans contain multitudes even if everyone plays to type.