Tag: Disability

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Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
Categories
Biohacking Travel

Day 1645 and A Sleep of Prisoners

I’ve had several day’s worth of poor sleep. My sleep debt had reached a good full night’s of rest at over 9 hours. And boy did I make it up and then some last night.

A screenshot of my Whoop’s recovery page

I wasn’t asleep all of those 15 hours according to both Whoop and Apple but it sure felt like I was in deep slumber.

With earplugs and an eye mask in, I felt dead to the world. And what’s worse is I’ve had an entire month of pooor recovery and sleep

The 4th of July is now my independence from a month of poor biometrics

Now on July 4th I have been liberated from a long month of poor biometrics and awful recovery scores. And it only took 15 hours of being in a dark cold hotel room and a build up stress, exhaustion, mistreatment and other sundry social frustrations.

Mixing more strain than recovery into my Whoop cocktail for maximum life

Today really does feel like Independence Day for me. I’ve been freed from a body weighed down by physical realities and I am now free from it.

There is a poem that comes to mind anytime freedom and sleep arise to my conscience thought. A Sleep of Prisoners is a 1951 verse play by Christopher Fry

A SLEEP OF PRISONERS

Dark and cold we may be, but this

Is no winter now. The frozen misery

Of centuries breaks, cracks, begins to move;

The thunder is the thunder of the floes,

The thaw, the flood, the upstart Spring.

Thank God our time is now when wrong

Comes up to face us everywhere,

Never to leave us till we take

The longest stride of soul we ever took.

Affairs are now soul size.

The enterprise

Is exploration into God.

Where are you making for? It takes

So many thousand years to wake,

But will you wake for pity’s sake!

–Christopher Fry

His writing captures something in my imagination with turns of phrase like “the longest stride of soul we ever took” evoking a crossing to the harsh wakefulness of reality. And as he says “it takes so many years to wake, but will you wake for pity’s sake?”

I have been slumbering in both reality and in the metaphorical ties that bound me to others. And today is the day where all Americans ponder how our founding fathers contemplated the reality of waking to the dawn of a new experiment. The American experiment continues and we must remain awake to our role within it. I have many thoughts on this which may now soon flow having awoken from quite a sleep indeed.

Categories
Aesthetics Biohacking

Day 1636 and Bounce Your Boobies

Somewhere along the way I leaned into my hippie heritage and stopped wearing bras. Don’t fret, I didn’t burn them. Nor do I view it as any sort of political or fashion statement. It was the pain that did me in.

Sure, the pandemic’s homebound nature gave me the freedom to let loose. But it was the pain in my middle thoracic spine that sealed the deal. It’s at its worst right at my bra line.

I simply could not tolerate the pain from the pressure of even the most forgiving fabric bralette. No bra fitter in the world (not even the famed Orchard Corset of the lower east side) could get around the physics of an inflamed spinal and intercostal condition. My breasts would have go free.

I do have some sense of propriety about the situation. I lock the girls up firmly for business and conservative occasions, but even then if I can find a way to style myself such that I can hide the lack of brazier I do it.

It’s long been hippie lore that the pressure of the straps and clasps of lingerie prevent lymphatic drainage, which can lead to any number of problems. The most feared outcome was breast cancer. Though I do not have any family history of the disease, I did not care to increase my chances as my health waned.

And as I pack for a summer camp out in which I will be socializing with some very conservative people indeed, I found myself humming a crass tune from my maternal grandmother’s third husband’s family.

It was a 4th of July tradition in the raucous La Flair clan (a flavor of French Canadians who oddly settled on Long Island) to host a talent show. The well endowed Boomer women of the clan, who wonderfully possess no shame, had a chorus line dance they called “Bounce Your Boobies!”

I won’t be dressing or dancing in the manner of this fantastic clan but it’s quite likely my boobs will be doing a bit of bouncing for the rest of my life.

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
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 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
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.

Categories
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.

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.