To All from Paul (aka Darius aka PBS)
I really appreciate people checking in from time to time and look forward to returning to blogging. It could be as much as a few or even several more months.
Just to clarify, I haven’t suspended blogging because of a downturn in health – that’s been going downhill for over a decade. I’ve been housebound and semi bedridden for years now - flat on my back on the order of eighteen or nineteen hours a day.
So without putting the blogging aside for a while, I’ll never finish a project I need to wrap up.
Without wanting to discourage good intentions, but…
Without wanting to discourage anybody’s good intentions, when it comes to the health problem, if you name it, I’ve tried it – along with a large number of things you’ve never heard of. I have a serious, severely disabling disease that we spent over ten years trying to resolve. We became semi pros at medical research; I traveled extensively, including Johns Hopkins and NIH. I saw world famous doctors.
And it turns out that there are a very small number of folks who have conditions that go beyond rare – they’re never diagnosed. That’s my status. We never gave up hope; it’s just that we tried everything, including every mainstream and alternative medicine people will want to suggest and some it’s unlikely any of you have ever heard of like myotherapy, spray and stretch, the Baldry technique, and even (frankly just to get my well meaning aunt to stop trying to sell me on it!) this deal where I sent my Polaroid photo to a guy in Canada who dipped it in his secret formula and then projected special energy rays at me for a couple hundred bucks.
Some of the boring details you may want to skip but since it sort of sounds like some people are wondering…
Though undiagnosed it’s nothing vague. No good days and bad days. Relentless progression for over twelve years. And while no vital organs are affected, pretty much everything that holds them together is. Findings include severe osteoporosis of the low back and left hip (despite normal hormone levels, which are normally off in men with osteo); skin lesions – only several of them, that developed over a period of years, but highly unusual: “consistent with Sarcoidosis” even though I don’t have Sarcoidosis; wasting away of soft tissue and connective tissue, including the padding on the soles of my feet (try Googling “loss of foot pad” – it’s unheard of); and permanent muscle spasms/taut bands throughout my back, shoulders, neck, and lower legs.
If you can name a relevant disease, I’ve been tested for it. And any disease you come across won’t be a good match for the findings I’ve just cited. The closest thing we found to a fairly good match was Mastocytosis – this was years after the doctors had pretty much given up and my sister and I were going all out on our own looking into rare diseases, what contaminants existed in the EPA clean up site in the hometown where we grew up… every angle you can think of. But I don’t have Mastocytosis. It was a simple blood test. And because one of the many things we learned over the years is that labs screw up tests once in a while, I had the test performed once the next year and once the year after that. Negative.
Thanks to everybody who keeps checking in, but I’ll be back… and with a new blog.