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.
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.
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.
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.
I am buzzing with energy as I spent my day touring the factory a hyperbaric chamber factory. I don’t want to get ahead of sharing details I haven’t cleared with them but I learned so much.
Istanbul is so far ahead on medical care delivery it is genuinely thrilling. There are 24 hour walk in hospitals. And
Which is good as the new IL17 inhibitor means to have a side effect of meiborn gland problems. In mere days I got another chalazion so I’d like that sliced out.
But my optimism about my immune systems capacity to operate functionally has taken a step towards optimism. That something so simple as oxygen and pressure has such significant benefits for our bodies is common sense.
How marvelous that the ingenuity of divers, doctors, athletes and under water workers to put together a treatment that is so effective it moved the biometrics of one of the healthiest men alive.
That only in the age of artificial intelligence did we get the inference capacity to show its efficacy is a real indictment of our academic and medical bureaucracy.
Over the winter we did a mold test on our bedroom after I had had a batch of sub-optimal bloodwork and flares in my autoimmune condition. We wanted to be thorough in assessing potential reasons for any issues from environmental to pharmaceutical.
I was suspicious that mold would be a culprit. Or perhaps I did not want it to be a culprit. Mold has always seemed like an excuse the professionally sick lean on like a crutch. You can imagine some worried well Goop reading white woman blaming mold.
I don’t know if this is engrained ableism on my part (lol) but no one wants to be that annoying sick woman with the litany of vague issues plaguing her life. And yes I fear this about myself because I do have to manage an autoimmune condition.
So I went into mold testing with some cynicism. It’s mike making a claim you’ve got a diagnosis of fibromyalgia. Sure both mold and fibromyalgia are real but I’ve learned from experience that you must avoid both lest you be seen as someone unserious.
The wall next to bed.
Alas it has turned out to be serious. It took most of the winter to work through the breaking down the walls part but once Alex began pulling back the walls it was dramatic and easy to spot.
The bedroom getting ripped apartment.
As it turns out the wall on my side of the bed has quite a bit of mold types growing happily. As best we can tell it must be some type of small leak in the pipes.
Gnarly white spores
There’s a couple hydronic heater pipes right by the baseboards so the current theory is maybe one developed a tiny pinhole leak for a bit that sealed itself back up. Don’t ask me about that one as it’s on Alex.
His plan for now is to remediate it, patch things back up, fog the room and have the carpets steam cleaned. Which is a bigger job than we might like but much better than it could have been.
Much as the winter has been hard on everyone in my close circle, I don’t particularly want spring to arrive. I’d rather have a pleasant winter follow the unpleasant one instead.
I woke up to fresh snowfall this morning after a hard night. Some previous stressor is making my hair shed. Pain has wrapped itself tightly around my intercostal as it radiates from my thoracic spine. I feel as if I’m fighting a light infection as I ran a fever yesterday and today.
I only have a few days till my next loading dose of my new biologic drug Bimzelx which is a new type of IL-17 inhibitor for my ankylosing spondylitis and psoriatic arthritis. Bimzelx targets both IL-17A and IL-17F, while my previous protocol Cosentyx targets only IL-17A.
Oh and don’t forget the mold issue. Figuring a solution to our master bedroom and downstairs mold issues means we’ve got some destruction and renovation that we probably can’t accomplish before the summer.
Which is a bit of a bummer as our guest floor isn’t as well air conditioned. Add in the late evening light and I expect the next two seasons will be challenging to make progress during. But sometimes you have to go backwards to fix existing problems in order to move forward.
In what has become a real persistent mood this winter, I have another dumb problem. I am losing my hair. Literally.
As it turns out stress can trigger hair into mistakenly going into what is called a rest phase. Perplexity tells me this is a temporary condition where significant stress pushes large numbers of hair follicles into a resting phase, causing shedding within weeks to months.
I have a lot of hair so it’s only really noticeable to me but I am tired of unexpected problems this winter. Obviously I have been under some stress and it feels like punishment.
Thankfully virtually all people diagnosed with it recover once the underlying stress has passed. It’s commonly associated with giving birth but it seems any significant or stressful event can trigger it.
My vanity is pleased this temporary. I can certainly take it easy and pull back from unnecessary stress. Plus it’s a great reason to overspend at Sephora on new haircare. There is a bright side to everything.
I am doing my best to remain steady. The world at large doesn’t make it easy. Every day we have a new crisis, impending doom and looming fascism.
I would be more inclined to reactivity if it didn’t seem much more important to pay attention to the actual problems over which I have some agency.
Some days that agency is used on frustratingly small things and others it’s the most fantastical science fiction come to life in our day to day reality. The indignities of human embodiment and the miracles of applying knowledge to problems exist in the same reality.
There is so much pretending and posturing in the process of pursuing any goal, it’s understandable that people mistake the symbols of things for the thing itself.
I am seeing some progress in my various home and health projects. I’ve been doing my best to remain optimistic even though I was not feeling well and the sheer amount of changes required was intimidating. But I’m seeing low progress.
An industrial hygienist is coming to do an arm test tomorrow on our basement as well as the rest of the house to confirm the extent of our mold problems. Our hope is that it’s contained to the bathroom in the basement.
If we have to do a bathroom remediation that presents an opportunity to do some renovations. While exciting that is also introducing more risk. But you can’t waste a crisis right?
