This is all very hard...

I was ruminating about everything today. I need to articulate how difficult it is to be in my position. I know I'm not alone in being correct about a self-diagnosed illness without a clinical finding, but add to that the fact the condition is apparently not documented anywhere but has been thoroughly researched and documented only to have this documentation essentially hidden and it just becomes that much more depressing.

I've had two years of slowing-changing symptoms that have impacted every part of my body and yet don't show anything on blood tests or imaging - other than bone density. I've had some real difficult days where my whole body hurt, others where my flesh felt like it was on fire in specific areas, still more days with severe pain of different types during different months. You name it and this puts you through it from nausea, stabbing, aching, burning, intense pressure, and sharp tearing. There has been a distinct progression that I can at least put forth an explanation for most of the things. But, I'll never be heard.

The system simply is not built to hear my story and draw conclusions when the medical research is not there to support it. It was. Now it isn't. So, I'm screwed.

I get to try to persevere through it all, without an explanation, without my family understanding or my co-workers knowing exactly how bad it is. I feel like I deserve an award every time I hit 5pm and every time I wake up in the morning and no one comprehends that is how hard it is for me to push from one to the next.

When does it stop? When do I just say I cannot push anymore? Currently, it has been more of a staged thing. I still do everything I can at home, but I cannot reach a top shelf, extending my arm up and stretching literally tears the muscles in my shoulder and arm. The pain is enough to make me see black for several seconds and even go lie down to focus on breathing one time. A second stretch will not hurt nearly as much, but the pain from the first one will linger for hours at a time. I cannot lie on my shoulder for any length of time or place weight on my elbow while lying down because it feels like a steel spike is pushed into my shoulder joint. Just tensing the muscles in my arm or shoulder causes tremendous tearing pain. How do I make someone believe in the tearing? Believe in the shrunken cells in my shoulder lining? Everything will appear normal on imaging, the flesh is simply apoptotic, just electrolytes in a cellular wrapper, and basically decomposing.

No one will do a muscle biopsy because they don't see the blood markers of known conditions. How do you explain that there is something they don't know about and that it does not show the things they expect because so many other things are already wrong in the body? Inflammation markers won't be high if the liver is too damaged, blood levels are all in range thanks to the pituitary, a reduction in volume and third spacing of everything from electrolytes to drugs. I cannot begin to remember everything about this condition, but I know what I read and I've lived through it all. Why the science is not online, while interesting, doesn't have any effect on how certain I am that I have the iatrogenic condition I originally read about in the diagnostic manual. I am 100% certain. Try to convince someone of something they've had to come to accept over 28 years with only infrequent reminders at first, but more consistently over time. Something that they have used as the basis of major life choice decisions, at first just in case, and then with more certainty. I continue to persevere only because there is no other choice, but there is no mistaking how hard it is to simply move from one task to the next each day knowing what I know, feeling how I feel.

This condition should never have been redacted from medical literature because the result of doing so is simply inhumane.