I had a pretty rough anaphylactic experience over New Year’s Eve (fireworks are pretty but dusty) that has me reaching for steroids to calm the hives. My autoimmune response was awful.
Not being one to take being sick laying down, I decided to make a run to a clinic that has a hyperbaric chamber. I’ve known a number of athletes who use them as well as those who suffer from rheumatoid diseases. I signed up for ten sessions as frankly I need to recover from the horrors of the corticosteroids I took.
I feel as if I have bubbles in my joints. They move and grow and every change hurts so badly I can’t stop myself from crying.
I’ve put out a request for biohacking help as it doesn’t seem like my current routines (which have been stable enough for normal work) are doing the trick any longer.
It’s hard sometimes to tell the difference between pain itself and the fear of the pain not relenting when the pain becomes acute. I get scared that the ever increasing pain won’t be controllable.
I’ll riffle through NSAIDs, Tramadol, and the dreaded stronger options as I do box breathing and voo-hum breathes. I’m practiced at throwing my attention away from the pain but the physiological impact is the same even if my mind can distance itself.
Before I was first diagnosed with ankylosing spondylitis and psoriatic arthritis, I had doctors try to convince me it was all in my head. “Take an Ativan!” I’ve never quite lost the fear that I won’t be taken seriously as pain management is such a clusterfork in America.
Addicts abound and doctors are often skeptical and malicious. It can feel as if those of us with chronic pain from illness will never be able to get enough distance between our genuine needs and the “drug seeking” junkies in crisis on our streets. We get treated like criminals with suspicion while zombies on the streets find other ways.
I’ve never known the supposed euphoria of an opioid like OxyContin as for me the rare occasion where I take on feels more like a brief respite from horror. There is no joy or ebullience. Only a mind of normality of function and clarity of mind which I imagine normal life is like for most people.
I’m looking for my next step in my medical care. If you’ve been watching the blog over the last few years you’ve seen my struggles with chronic health issues and the work I do to be well enough to pursue my work.
But I’m at an impasse and I know we must have more solutions than what I’ve got. Looking for a doctor or research group that may have protocols or care capacity for the autoimmune buffet of nonsense that plagues so many. I have ankylosis & psoriatic arthritis, joint pain & anaphylactic allergy issues along with migraines.
I’ve worked with woo, lifestyle and nutrition changes, supplements, osteopathy, injections and IVs, longevity science & expensive biologics to pursue the functionality I have now to work. But I long to work the hours of my youth and I don’t believe science has progressed so little that arthritis and migraines should be so painful and exhausting. So please feel free to DM on Twitter with recommendations for clinics and physicians.
It would be helpful for most media readers to understand the history of the news business and its relationship to war and finance.
For all the standards and ethics and best practices we expect from professional newsrooms (and they do have conduct standards), the history of media isn’t a clean narrative America went to war thanks to Yellow Journalism in the Spanish American War. If you think the Pulitzer is a badge of merit wait till you learn its history and financing.
You have probably lived through multiple media scandals. Millennials remember the neoconservative “weapons of mass destruction” story thanks to notably terrible editorial decision at the New York Times.
When someone says you are in a media bubble or on an information island, recall that these systems made up of people with varied interests, ambitions and aims.
Seems like everyone I talk with is extremely sick. We’ve got norovirus ripping through a bunch of populations in America and Europe. Lots of reports of flus and Covid variants taking folks with respiratory cases in my professional and personal life. And of course everyone is worried about the H5N1 the bird flu variant.
I myself am having some autoimmune flares that I’m resorting to treating with steroids which is extremely frustrating. I fear the power of immune system rebooting drugs like prednisone.
Steroids are the “nuke it from orbit” option when your system is too reactive. I try to dose it down as soon as symptoms clear but blowback sometimes means you can’t titrate off them without symptoms returning. I rarely do more than 5mg a few days in a row.l but even then I worry about its usage. Being covered in hives and unable to think from an autoimmune response is probably worse though. Minimum viable dose in all things.
“We aren’t quitters” could be a tagline from a sports movie, a speech about the American people or your parent’s family philosophy.
Fortune favors those with fortitude. Gritsums up entire pedagogies of successful education and institutional cultures.
And here I am, one day at a time, continuing to log my thoughts for anyone who might care to read them on this public journal.
When I first began I thought the experiment to write every single day I thought would last a month. Then I thought maybe I could make it to a full year. Now I’m unsure if I will ever want to stop. I’m not even sure I know how to stop?
I’m less sure the narrative aspects of this log are as crucial to me as when I first started . I wanted to improve my capacity to write regularly so I set out to practice that creative process.
Having achieved my goal to write and publish each day, it may be time to evolve this narrative into a more traditional blog format from the past.
We used to include links, asides, and unrelated tidbits alongside narratives and storytelling in old school weblogs. I may try to try to include tidbits of what I am seeing each day as a way of sharing my context and inference process.
If the mood stokes for essays (as is my usual habit) that’s fine and if the mood strikes for a log of influences that is fine too. Year five has permission to be whatever it likes.
Hannu Rajaniemi an entrepreneur and science fiction author has a new book Darkome about a world where with a corporate giant who invented a mRNA vaccine wearable and an underground of biohackers working to keep those vaccines and edits available online not available in America but thankfully I got a copy in Europe.
Why do we know so little history? Bogus airport bestsellers are one culprit. Or a bestseller anyone who took an AP history course “A World Lit Only By Fire” is mostly bunk. Turns out that’s common.
“Style is a magic wand; everything it touches turns to gold.”
