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Tuesday 6 June 2023

A Malfunctioning Ship

If you haven't seen the movie Passengers, there are spoilers below. 

In this movie, the ship that the passengers are traveling on starts to malfunction. Slowly, one system after another seems to become problematic. Not all at once. Not in the same location or in the same way. Not necessarily even related. 

When the main characters finally access a virtual diagnostic tool of the ship, it shows widespread system malfunctions. 


They know that this is probably caused by something larger - some damaged part of the ship - but they have to go looking for it. They have to search every inch of the ship to find it. Even though it is a massive malfunction, it still takes time to find, and the longer it takes to find the source, the more widespread and drastic the system failures become. 

This is how I feel

It started with the digestive system. Intestinal inflammation, ulcerations, physical damage. (Dx: IBD, large intestine removed in 2003 with an ileostomy, then an internal J-Pouch created in 2004, Crohn's Disease followed)
Then more organs were affected. 

My thyroid was then involved. (Dx: Hashimoto's)

My liver and pancreas. (Dx: PSC - secondary to Recurrent Pancreatitis, brought on initially by allergic reactions to medications)

My heart started showing signs of something being wrong. (Dx: Sinus Tachycardia)

My eyes started deteriorating. (Dx: AMD, then changed to Malattia Leventinese, plus Astigmatism in both eyes)

My skin developed scaly, flaky, rashes. (Dx: Psoriasis)

My uterus and ovaries had to be removed in 2017. (Dx: Ovarian Cysts, Chronic Pelvic Pain, pancreatitis associated with menstrual cycle, severe internal swelling episodes associated with menstrual cycle, myofascial pain disorder)

My gallbladder just up and failed. (Removed in 2019)

Frequent migraines. (Dx: Chronic Migraines

Swelling of my tissues. (Dx: HAE III ?)

Sacroiliac Joint problems, spine, shoulder blades. (Dx: Ankylosing Spondylitis)

My circulation became problematic. (Dx: Raynaud's)

Now, a sudden onset of asymmetrical hearing loss. (Dx: ??? - currently waiting for an appointment with an ENT)

And it's not like we haven't looked. I've been tested for several widespread, systemic diseases. Diseases like Lupus, Lyme Disease, Complement System Disorders, Blood Disorders, various types of Cancers.... many with ambiguous test results or inconclusive scans, or sometimes totally normal results. I have been tested for these things over and over and over again. Assumptions and diagnoses that seem to point to a larger problem, but hidden away somewhere that can't yet be seen. 

It just feels as though whatever the main problem is attacks a different system at a time. Sometimes I will have a persistent issue, with specific symptoms, and then it will just settle on its own for a while. Then another system gets attacked. 
At one point doctors were having me tested for autoimmune disease of my kidneys because they weren't functioning properly for a couple of years. 
My liver enzymes were high and my liver wasn't functioning well for three years before it was suddenly okay - despite there being visible physical damage and cirrhosis. It was just suddenly gone. 
I had mono one year, but because my immune system was suppressed, I wound up getting Mono every year for about 5 years. And then every 2 years. And then nothing. 
A random bout of Shingles. 

It's as though every couple of years, a new system starts to malfunction. Sometimes slowly. Sometimes so little that it's almost ignorable - explained away by medication side effects or comorbidities, or symptoms that I just hadn't experienced yet from the list of diagnoses I already have. Then, it hammers on that one system, it causes multiple episodes of the same symptom; the same attacks, and then, after a while, it slows down until it's more manageable. Though it never returns to full, healthy, function. 

It's hard not to imagine a widespread system malfunction. A lemon. Parts of a vehicle that continue to break, but mechanics can't diagnose the problem behind it. A domino effect. A butterfly effect. All different systems - some of which seem to have nothing to do with the other. 
And yet... maybe they do? 


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