About

 

My body is a pinata of pathology. Rare and chronic stuff spews forth every time you look at me funny. Be careful. You never know what's going to fall out. 

Basically, the moral of the story is...don't be me. Just don't. Medicine kills patients like me and they are mercilessly efficient.

Right now, this is what we think is going on as far as we know:

-Hepatic Adenomatosis- .007% of the population. 30+ tumors. Hepatic resection due to hemorrhaging within the capsule. Took 12 appointments and multiple ER visits over a month while acutely ill and unable to eat to get anyone to order testing and figure out a diagnosis. At one point, I was told I just had IBS even though you could see some of the tumors on the ER CT.

From start to finish, once symptoms started, this took five years to diagnose properly and was only diagnosed when it became critical. It caused gross anatomical abnormalities that garnered comments from various physicians who never did any follow-up for over a decade. It's quite possible that, with better care and earlier imaging, I might have avoided a hepatic resection or been able to pursue less invasive options.

-Familial Hyperaldosteronism. Clearly inherited but not by any genes known to genetics. We've been told they might figure out the genes in the future. Took ten years to get diagnosed, although I finagled treatment for it sooner than that. My relatives have festered for 15 and 20 years and one has died due to lack of diagnosis and proper treatment.

-Asthma, sometimes difficult to control. Source of history of long term, high dose steroid use x 15 years. (I predate modern asthma medications and prednisone was the only tool in the toolbox for out of control asthma.)

-History of adrenal insufficiency after high dose steroids (3x) with 1 adrenal crisis. (Yes, textbooks say that's impossible but my body doesn't read or care about textbooks, and frankly, most of the thresholds and standards were set almost a century ago. I imagine the epigenetic substrate has evolved since then. Don't you? And shout out to the ER who treated it as a crisis and saved my ass. You rock!)

 -PCOS with infertility requiring IVF.

-Prediabetic. Likely since puberty. Through tremendous effort on my part, I've managed to stave off diabetes to date.

-Diverticulosis with some rounds of the -itis. I was told it's likely from long term prednisone use. 

-Synovial cyst triggered hard by the Covid vaccines (yes, really) to the point of requiring surgery and congenital spine deformities (benign but somewhat relevant as my spine crumbles with age).

-Obesity which is really a symptom of the different endocrine things going on. But it's been weaponized a lot to deny me care, especially when I was younger. Like everyone, I've done different diets and exercise programs but the weight always came back. Or I wouldn't lose at all.

As of the last several years, the liver tumors really inhibit eating. That's the bizarre thing. I should be skinny now. I'm at a deficit with a hard limit imposed by the liver--I can't overeat at all. Sometimes I'm even starving (literally sub 1000 calories) for months at a time and don't drop much weight at all. My system is just clearly abnormal.

To be clear, I KNOW WHAT TO DO and it used to work (kind of). NOW IT DOESN'T WORK AT ALL. 

I have sat through the dietician appointments telling me not to drink soda. Like, wow. So science. Much medicine. Yeesh. Okay Sherlock. Try this clue; I'm not a beginner. 

Right now, I'm having decent success using Ozempic which seems to correct my metabolism to where I can tolerate a more normal diet without weight gain. However, inputs like exercise and calorie counting still aren't as effective as they should be. Weight loss is still very slow.

-CHEK2 genetic mutation.

-APOA5 genetic mutation.

-Pancreatic IPMN which has started growing. 

-Grab bag of issues from Covid. Covid really hits my nerves hard for some reason, as do the vaccines.

Look, doctors do their best to deny, dismiss, deflect, and delay my care. Even the nice ones. Even the good ones. 

Mostly I get diagnosed or access care because I took all the premed classes I could manage until I was half way medically literate and then combined that with being hella stubborn and pushing hard for care. 

The big question no one can answer is most of my shit could be diagnosed with 1-3 months of testing and imaging. I'm not hard to diagnose. All the science was in place, but no one would pick it up and use it on my behalf. 

Instead, I've been left to fester for literal decades and neglected until I've not only lost out on money and time, but have also had to have major surgeries. At this rate, medicine will eventually kill me. They've already killed other family members.

We're going to live on Mars, but God forbid we do blood work or an MRI or listen to the patient...

And because physicians always like to evaluate patients' intelligence based on what we do...Despite some of the ugly writing on this blog, I'm a bestselling author (don't ask, I'm not telling) and I run several small businesses that would bring in way more money if I didn't have to deal with my health all the time. I've been a thought leader in every industry I've worked in with citations in mainstream media, speaking engagements etc... 

Prior to starting my own businesses, I worked in Fortune 500 corporations doing complicated supply chain logistics with serious life and death as well as environmental implications. Doctors aren't the only ones who save lives...

The world should be my oyster, instead I pour the best of my energy into begging doctors to do more than deny, delay, deflect and dismiss me. And then finding a way around them when they won't.

Note: Timelines and other minor details are obfuscated in an effort to make me less identifiable.