60 documented conditions. 46 documented medications – many of them repeats of the same drug at different doses.
And that’s just from two years. On top of the 15 prior years when those from before got it wrong according to those from today. But they only just think it. There’s no proof either way, except the unexplained conditions.
No clues. One diagnosis of a subset of symptoms. But, “There’s a chance this diagnosis is actually one larger symptom indicating a much bigger problem. We can really only diagnose this by ruling out other things like parasites, infectious diseases, that sort of thing.”
Zero parasites, infectious diseases, or similar sorts of things.
One supplement for a vitamin deficiency that occurs only sometimes, but often enough to address it always. One medication to kill something we can’t prove is the problem but that never helps, so it doesn’t hurt to kill it. (It’s a bacteria that may or may not impact any conditions but certainly is not a cause.) Two thousand dollars for the medication; only four hundred fifty and some change after insurance. And unfortunately, at that price there are zero superhuman side effects that make me more majestic and unicorn-like. Oh, and the price comes when a third of our household income has been unobtainable for at least two months, because others need medical attention, too, and the short-term discomfort doesn’t outweigh the long-term gains.
Two medications for symptoms that have no cure and no cause but are undeniably present and that impede “normal” life – not that I remember normal. Multiple side effects for both of these medications, the most harmless being that they function together as hallucinogenics some of the time and the most alarming and frustrating that they almost certainly according to the one medical trial that has been completed since the 1960s cause early-onset dementia. Most often, the side effects mimic the conditions, so nothing is worse but it might sometimes be better.
Diminished quality of life either way.
But only if I can remember normal. And whether it’s psychological because I know the side effects or because my brain is actually deteriorating as I treat the other systems in my body, I don’t know. But if I take the two medications, I can’t remember the last five minutes, let alone normal.
One parent has taken the same medications for the same symptoms since the age of 22. Birthdays are often forgotten or remembered as the wrong day. Zero friends and other family understand why it does not bother me.
I understand 100%.
Innumerous notebooks, note pads, pens, and pencils in every room so I can write things down as they come to me. This helps in two ways: first, when I take the two medications I can write important thoughts down to prove later that I thought them and that they were important, because in five minutes I probably won’t remember, and second, when I don’t need the two medications because I’m either fasting (it is not intermittent, but frequently necessary) or having a lucky day, I might think something brilliant and need to jot it down so I can come back to it later and ponder my own brilliance.
And sometimes it’s an item to add to the grocery list. We always keep one of those running.
One mildly crooked spinal cord that keeps two hips moderately twisted. One neck permanently impacted by a couple old whiplash injuries so it curves slightly opposite from its original slope. A few ribs that occasionally need pressing into place when the spinal cord is stretched and adjusted to realign the hips and ease the pain in the neck.
Moderate but mostly unmeasured post-traumatic stress served with paranoid anxiety. One trauma therapist needed but zero ability to pay for the therapy due to cost of medications and life. One new laptop and at least eleventy-seven journals lying around the small house so I can get it all out when my brain is in overdrive and suppress the stress like a normal human being.
A sense of humor more twisted than the hips. This also helps with the stress. I manifest joy where possible regardless of the situation.
Insomnia. Brain fog. Pain.
Several buckets of frustration generously served with resignation.
Another nurse practitioner, another specialist, another shrug. Another wall the color of vanilla ice cream flavored with imitation extract – the cheap stuff with the jaundiced undertones. Another framed print of trees or apples or innocuous still life to stare at while waiting. Another poster of anatomical details to mislead patients into believing it’s really as simple as looking at the pictures.
Lots of pictures.
X-rays. CT scans. MRIs. Some with contrast; others not.
One thousand one hundred fourty-three pins about chronic health issues to help with keeping that twisted sense of humor fed, because laughing feels better than crying.
One frayed rope. Eternal hope for answers that don’t create more questions.
The tally increases.
Optimism and that sense of humor follow like Winnie the Pooh with a red balloon. (Not like It, no matter what Stephen King writes. The character with the red balloon is one simple choice and not like a diagnosis. That one choice is probably more indicative than a Rorschach test.)
Reality chases, certainly.
Joy is where you look for it, no matter the tally.