Domo, Estaban-san! I appreciate your tips and support. I agree with all you say but, am uncomfortable speaking in third person. That's where we speak in 'we, us, they' terms, right? It's so British.(lol) Gwod...after being spat at as "high-hand", sheesh, me thinks me should just keep me to me. Imagine this entire post with "me" where there is an "I"...
I've been on other 'patient-websites'... and wrote long winded stuff there too. How do you write about an expansive subject as 'chronic disease' and not make it novel length?
LOL...as to the "speed" of humans curing disease: It does seem that money is all we need to find answers, but it's actually more than that. It takes brains and application, creativity and destruction and a ho' lotta time....and why man created a hundred million ways to get-off, because patience is hard.
I think a lot about when I first started to fall ill this way and try to figure how this switch got flipped, what the "switch" is, and how to turn it off or make it useful.
Eastern medicine suggests for our disease we avoid certain foods. Ocean foods, foods(animals) that are hatched and the eggs, preservatives that stabilize citrus acids and super funky nitrates, like those found in cup-o-noodles, are to be avoided. I wonder about these foods prior to being triggers. I had been warned about the mercury in sea food, but being Japanese'ish, eating from the sea feels better in my tummy than cow.
I wonder also about the way I ran my body while I was well and the possibility of my having conditioned a metabolism for myself that doesn't tolerate being idle. My habit was to work from dawn to dusk, while only taking food in the evening and running on it the next day. I call it: The cave-person diet. Well, one day I forgot the general rule about the pyramid paradigm we work in and caused a brick above me to fall on my head. Being fired by folks we don't respect is an amazing emotional/egotistical assault. Well, it was for me, anyway. I went to a really low and dark place...sitting there angry, doing nothing, drinking reconstituted spiced cider constantly. (The cider is nothing but a packet of all the things Chinese medicine says to avoid.)
I've read that we find this disease often in famine nations and think about my commonality... I did make my body feed on it's self the last two or three hours of every shift I'd worked for decades. I know I did. I've always been hyper and a poor daytime eater. But once the sun goes down, I mao.
So, in my 'toe' perspective, I imagine I'd caused my body to respond to my demands with a protein that would do as I asked; however these guys are like an elite army and what do we know these factions to do when there is no war to be won? Beat up on those not of the army... Go figure we see the news headlines we do. The issues are cellular, not social.(in my wordy opinion:) )
My step-mom always warned of us girls over exerting our bodies and that weird things happen when we don't be gentle to the whole self and not just our ego/image. I'd always thought the woman had "snow white syndrome" but, gosh, you know, I think the broad might have a point.
I wonder what we were all doing the 3 years before our first symptoms. How many(if any) are like me? What do we all look like? What's our average muscle to fat ratio? Was there a recent lose? What was the bulk of the diet?
Your new doc's wonder about early onset diabetes twinkles in my mind a bit... Man, you wanna talk about a bunch of folks suffering long-term human ignorance. Diabetes has got to be a THE head-banger. I mean really! If we aren't failing horribly with synthetic insulin, we are continuing to make and eat things that make more diabetics...*face-palms* When the aliens land, I'm saying I'm a dog and deny knowing any of us... We can share a pack if you like.
They can see which "fighter-cell" it is that is causing the disease but don't know how to change it's behavior without hurting everything too. Can anyone else see exactly what cells are funky your systemic groove?
I see an oncologist for my 'treats'. I'm confused by those being treated by neurology...I thought they were more mechanics and electricians than about bone-marrow and blood proteins.
I did have a situation during the earlier parts of diagnosis while getting a nerve conduction test follow up, Mr. Neurologist was poking around about my treatment direction and offered his department's ideas for a longer remission, blah-blah-blah... Frick'n claim jumper! He had roids to offer above IvIg. At the time I was 30 and asked him what my bones would look like 5 years down his road... He didn't like facing his drug's side-effects, but rather wanted to exploit IvIg's. Busted hips&a hunched back or stroke, gee, which would suck less...?
And then it struck me: Any doctor treating us that does NOT understand the importance of our simple belief in our doctor and course of choices; and EVER undermine this without seriously seeing a threat, but just to, I don't know, schmooze patients from another practice to increase their's is a gigantic P.O.S. pfft, I thought only hookers hijacked clients.
I wonder how often others have been led around this way... See why we should never go to the doctor without our best defender in tow. I'll bet none of them are like this when our mom or best pal are present; just like most predators won't offer candy when auntie is watching... I know they are humans too. I'm just stupid-silly enough to think they'd be different and not have the same trappings any average person would.( like laziness, hubris, ego-mania, psycho-social, brain-farts and fear...) Medical school seems like such a long b!t@h & all. You'd think the experience would build a better human, but it does cost tons and maybe that is what is botching their manners...debts and the realization that they, after all the effort, are now a slave to their loan payments... How bunk.
I've toe'tally derailed your thread... crumb.