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My tears are toxic, but .... MAN !!! They have been a-flowing for the last 40=ish days.
Here's a post that I put on my blog, tonight ... I made one reference to my current status, on DS, but ... I can't help wondering if opening up about this latest crisis ... might take some of the weight out of it for me.
I miss you all, but ... then again ... Hell ... I miss ME :-)
Please note the reference to ... how much I've been considering the Gag Order that rots MY soul, while protecting my abusers. Specifically ... if anybody has any thoughts about the wisdom of a clearly unwise move (!) ... I'd love to hear them.
----
WHEN THE BULLET HITS THE BONE.....
That's just a line from the awesome Golden Earring song, "Twilight Zone,." It really has no relevance to this post, except that I needed a more genteel way to say, "When the shit hits the fan."
Thoughtful of me, no ??
Nobody wants to be "that guy." (assume gender neutrality was intended, there ......)
"That guy" manifests itself in myriad ways. In this case, I mean the person who posts/only posts/mostly posts the saddest bits of their life on Facebook.
But ......
I've been bedridden since Christmas Day 2013. Without going into all the details, we know -- at this point -- that my liver has been asking permission to fail, and proving its willingness TO fail by functioning at a greatly diminished capacity. The onset was sudden -- a matter of hours.
I'm all jaundiced. My skin and eyes are yellow. That's the "bile" that the liver is meant to clear out. Lemme' tell ya: that bile feels like a million bucks as it oozes and wends its way out of my chemically burned, Not Protected By Fluid-Filled Lenses eyeballs.
As it turns out, though, yellow IS a pretty good color for me. Does that make me an autumn ??
Stage 1 of something mellifluously called "Hepatic Encephalopathy" involves an inverted sleep-wake cycle. I am awake ALL night long, and struggle mightily for an hour or three of sleep over the course of the day.
And then there's the "pruritis." That's itching to you and me. The same "biliary salts" that exit my eyes exit every pore in my body, causing an unmanageable itch that -- were my liver not in jeopardy -- would surely drive me to drink.
I'm getting good care. As a guy who's been a patient since about the second trimester in utero ... unfortunately ... I can ramp up on medical stuff as quickly as my wretched little eyes will allow. I know enough to know that .... at this point .... we need more info. Can't rule anything out, yet.
Because I have a compromised immune system, it is agreed that hospitalization is inappropriate, unless [any of the following] happen.
In March of last year, I threw the kind of Hail Mary pass that the OLD Peyton Manning could throw (knowing NOTHING about sports, I really hope that worked !), and took off for Central America, on the off chance that ultra-high humidity would offer relief from pain from the chemically burned eyes.
At the end of a pretty decent three months, the magic wore off, and I returned to the States.
I had no Plan B before Central America. Perhaps not surprisingly, I have no Plan B now, either. If I did, though, having a meltdown in a major internal organ ... probably wouldn't have been considered.
Since coming back to the Stated at the beginning of August, I've been working with a Pain Clinic AND a Palliative Care clinic, trying to manage the neuropathic pain that comes from the chemically burned eye thing, but we never made a dent in it. It's possible that any/some/all of those meds could be responsible for what's going on now. Too soon to tell.
If they arrive at the conclusion that it quite likely WAS a medication, then the only definitive way to prove it, and which one (important) is to "re-challenge me:" start me on the drug again, closely monitoring liver function, and push up dosage slowly, over time, praying all along the way that The Shit Doesn't Break. Again.
But none of that is for today. Today, we have to get/keep me stable, keep weight on me (think I've lost 15 pounds since Christmas Day), and try to put a name to the face on .... whatever's going on, here.
As many of you know, this all began in 2009, when -- having moved into our new Colorado home -- life fell apart. Honestly, it didn't "fall apart" as much as it was wrest from me by comparatively normal looking, but absolutely soulless, evil, and sadistic people who lived in the same Colorado community as I did -- people who, literally, did not believe that I am medically disabled.
That City, that County, that Judge have imposed a Gag Order on me, barring me from telling my story publicly until something like September of this year.
... on pain of being prosecuted for a felony that I did not commit.
I'm at the ragged edge of not giving a damn what those people do to me. I'm at the ragged edge of writing and posting the story, circulating it to media outlets, naming names, including photos, home addresses, e-mail addresses, and phone numbers of the players, documents uncovered through Discovery, etc., etc., etc.
"Freedom's just another word for ... nothing left to lose."
They truly cannot take anything more from me than they already have. I'm IN prison, now ... albeit a very plush, ocean-view prison in Southern California (thanks, Mom !!!)
It is directly because of .... That Of Which I Cannot Legally Speak .... that I can no longer wear the lenses that gave me back .... a big chunk of my life. And it is now anything BUT a certainty that I'll ever be able to wear those lenses again.
Four Southern California corneal specialists (one of whom is trained in fitting those bionic lenses) have told me, since August, that ... no ... you MUST not wear them. They have told me that I must get BACK to Boston to reprise the 6+ week "fitting process," to see if I CAN wear them again.
But I'm absolutely certain -- having done the six-week trip twice already -- that I'd enjoy Gitmo a hell of a lot more. That's why we were trying to get control of the pain: to allow me to get to Boston, and survive the process yet again .... but ... this time ... lacking the former confidence (read: carrot) that there would be a big payoff if I did get through it.
Naturally, we had to taper me off of each and every pain med, over the last month. I'm flying Au Naturel again ;-) Debilitating Eye pain. My closest friend and constant companion. 'Tis good to see you again, Old Chum.
I'm not sure why I chose this night .... my wife's birthday .... February 4 .... to spill the beans.
But there they are. The Beans.
Sadly, because of my eyes, I have had to -- and HAVE -- risen from the ashes (of medical disability) more times, in 50 years, than I care to recount.
But .... today ... the ashes feel pretty good. Familiar. Comforting. Safe. Maybe I'll just be early for Ash Wednesday this year.....
Stay tuned.
Ciao for now .... from the Idiopathic Liver Injured bowels of .... The Gulag.
Here's a post that I put on my blog, tonight ... I made one reference to my current status, on DS, but ... I can't help wondering if opening up about this latest crisis ... might take some of the weight out of it for me.
I miss you all, but ... then again ... Hell ... I miss ME :-)
Please note the reference to ... how much I've been considering the Gag Order that rots MY soul, while protecting my abusers. Specifically ... if anybody has any thoughts about the wisdom of a clearly unwise move (!) ... I'd love to hear them.
----
WHEN THE BULLET HITS THE BONE.....
That's just a line from the awesome Golden Earring song, "Twilight Zone,." It really has no relevance to this post, except that I needed a more genteel way to say, "When the shit hits the fan."
Thoughtful of me, no ??
Nobody wants to be "that guy." (assume gender neutrality was intended, there ......)
"That guy" manifests itself in myriad ways. In this case, I mean the person who posts/only posts/mostly posts the saddest bits of their life on Facebook.
But ......
I've been bedridden since Christmas Day 2013. Without going into all the details, we know -- at this point -- that my liver has been asking permission to fail, and proving its willingness TO fail by functioning at a greatly diminished capacity. The onset was sudden -- a matter of hours.
I'm all jaundiced. My skin and eyes are yellow. That's the "bile" that the liver is meant to clear out. Lemme' tell ya: that bile feels like a million bucks as it oozes and wends its way out of my chemically burned, Not Protected By Fluid-Filled Lenses eyeballs.
As it turns out, though, yellow IS a pretty good color for me. Does that make me an autumn ??
Stage 1 of something mellifluously called "Hepatic Encephalopathy" involves an inverted sleep-wake cycle. I am awake ALL night long, and struggle mightily for an hour or three of sleep over the course of the day.
And then there's the "pruritis." That's itching to you and me. The same "biliary salts" that exit my eyes exit every pore in my body, causing an unmanageable itch that -- were my liver not in jeopardy -- would surely drive me to drink.
I'm getting good care. As a guy who's been a patient since about the second trimester in utero ... unfortunately ... I can ramp up on medical stuff as quickly as my wretched little eyes will allow. I know enough to know that .... at this point .... we need more info. Can't rule anything out, yet.
Because I have a compromised immune system, it is agreed that hospitalization is inappropriate, unless [any of the following] happen.
In March of last year, I threw the kind of Hail Mary pass that the OLD Peyton Manning could throw (knowing NOTHING about sports, I really hope that worked !), and took off for Central America, on the off chance that ultra-high humidity would offer relief from pain from the chemically burned eyes.
At the end of a pretty decent three months, the magic wore off, and I returned to the States.
I had no Plan B before Central America. Perhaps not surprisingly, I have no Plan B now, either. If I did, though, having a meltdown in a major internal organ ... probably wouldn't have been considered.
Since coming back to the Stated at the beginning of August, I've been working with a Pain Clinic AND a Palliative Care clinic, trying to manage the neuropathic pain that comes from the chemically burned eye thing, but we never made a dent in it. It's possible that any/some/all of those meds could be responsible for what's going on now. Too soon to tell.
If they arrive at the conclusion that it quite likely WAS a medication, then the only definitive way to prove it, and which one (important) is to "re-challenge me:" start me on the drug again, closely monitoring liver function, and push up dosage slowly, over time, praying all along the way that The Shit Doesn't Break. Again.
But none of that is for today. Today, we have to get/keep me stable, keep weight on me (think I've lost 15 pounds since Christmas Day), and try to put a name to the face on .... whatever's going on, here.
As many of you know, this all began in 2009, when -- having moved into our new Colorado home -- life fell apart. Honestly, it didn't "fall apart" as much as it was wrest from me by comparatively normal looking, but absolutely soulless, evil, and sadistic people who lived in the same Colorado community as I did -- people who, literally, did not believe that I am medically disabled.
That City, that County, that Judge have imposed a Gag Order on me, barring me from telling my story publicly until something like September of this year.
... on pain of being prosecuted for a felony that I did not commit.
I'm at the ragged edge of not giving a damn what those people do to me. I'm at the ragged edge of writing and posting the story, circulating it to media outlets, naming names, including photos, home addresses, e-mail addresses, and phone numbers of the players, documents uncovered through Discovery, etc., etc., etc.
"Freedom's just another word for ... nothing left to lose."
They truly cannot take anything more from me than they already have. I'm IN prison, now ... albeit a very plush, ocean-view prison in Southern California (thanks, Mom !!!)
It is directly because of .... That Of Which I Cannot Legally Speak .... that I can no longer wear the lenses that gave me back .... a big chunk of my life. And it is now anything BUT a certainty that I'll ever be able to wear those lenses again.
Four Southern California corneal specialists (one of whom is trained in fitting those bionic lenses) have told me, since August, that ... no ... you MUST not wear them. They have told me that I must get BACK to Boston to reprise the 6+ week "fitting process," to see if I CAN wear them again.
But I'm absolutely certain -- having done the six-week trip twice already -- that I'd enjoy Gitmo a hell of a lot more. That's why we were trying to get control of the pain: to allow me to get to Boston, and survive the process yet again .... but ... this time ... lacking the former confidence (read: carrot) that there would be a big payoff if I did get through it.
Naturally, we had to taper me off of each and every pain med, over the last month. I'm flying Au Naturel again ;-) Debilitating Eye pain. My closest friend and constant companion. 'Tis good to see you again, Old Chum.
I'm not sure why I chose this night .... my wife's birthday .... February 4 .... to spill the beans.
But there they are. The Beans.
Sadly, because of my eyes, I have had to -- and HAVE -- risen from the ashes (of medical disability) more times, in 50 years, than I care to recount.
But .... today ... the ashes feel pretty good. Familiar. Comforting. Safe. Maybe I'll just be early for Ash Wednesday this year.....
Stay tuned.
Ciao for now .... from the Idiopathic Liver Injured bowels of .... The Gulag.
-
I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
-
First, I hope everyone is doing well, and continuing to fight that good fight! Keep up the great work on yourselves; I'm rooting for all of you!So, I started doing therapy at the beginning of the year, when I was in my most depressed state, but with my therapist, I made big changes and steps in the right direction. But, over a month ago, she couldn't take my insurance anymore, and I had to stop...
One of those dorky end-of-year prediction lists of the 70's contained a prediction that by the turn of the millennium Russia would have more freedom than the US. And here we are. Freedom Free, at last. Proud sponsors of the world's largest prison population...
I haven't a clue what to say here. Just wanted to put a plural to Jen's closing statement.
I/we do care about you, you know.
I had a minister friend who has silenced unfairly by his bishop for a year. He wasn't defrocked, but he wasn't allowed to say a word in church, about church, nothing.
He waited it out, and on the Sunday his silence order expired, he got up in the pulpit and spoke for the first time in a year. Here's what he said: "As I was saying before I was so rudely interrupted...." Ha!
True story. May it be so for you.
You're all right, of course. I've come too far to blow it all out of my current Anger With The Gods.
And my anger will never be a match for their (the Institutions) intent to protect themselves ... at all costs.
So I shall wait. I believe I have a built-in distraction, now.
Jen ? Oh, Jen, Jen, Jen. When you speak Medical the way you and I do, and you are NOT a doctor, you are most certainly a long-standing patient who found it necessary to educate themselves.
Surgery. Weather. No surgery. Maddening.
Medical update, from this morning:
Just got back from the Liver-ologist's office. The fellow (verrrry likeable doctor) said,
"Did anybody call you about your MRI results ??"
Uh, no.
"Well ... we found something on your MRI. They're calling it a "short segment, high-grade stenosis of the common hepatic duct, just distal to the bifurcation with mild central intrahepatic biiary dilation. Recommend ERCP with brushings."
So ... you found something, where the better answer was you having found nothing.
"Well ... yeah."
Way, way WAY too soon to know what's clogging up the pipes, but ... as they were careful to point out, several times, they "can't rule anything out."
I get it, Doc. It could be cancer. Message received, loud and clear.
They're going to do something called an ERCP. For those who don't know (yeah: me), that's an Endoscopic retrograde cholangiopancreatography:
http://en.wikipedia.org/wiki/Endoscopic_retrograde_cholangiopancreatography
But what else COULD it have been ??? ;-)
They'll use a wire and a snake and a couple of ridiculously expensive attachments (julienne blade, coffee grinder, ice crusher, dough hook) to go from Point A (mouth) to ... the nether regions. Along with getting a good look at What Lies Beneath, they may be able to get brushings (for cell analysis), a biopsy (a bite), and/or ... do a balloon inflation of the constricted part, and insert a stent, if not remove the blockage through the ERCP.
The samples will show both what the blockage is and .... what sort of cellular problems (disease process) might ALSO be affecting my liver. As the fellow was quick to point out, it's USUALLY not two things, simultaneously, but ... it sure can be.
If they do put in a stent, to keep the duct open ... more likely than not ... the procedure would have to be repeated every three months ... forever. Yippee Skippy. That (stent. Wash. Rinse. Repeat) ... looks far more likely than not, at this point.
By implication, the doctors were also clear that it could be Primary Sclerosing Cholangitis, and/but that I really don't want it to be THAT, either:
http://en.wikipedia.org/wiki/Primary_sclerosing_cholangitis
Hey ... Doc ?? What's the really okay stuff that it might be ????
[crickets] [a lone tumbleweed bounces against the dusty landscape]
Oh. I gotcha.
"We're going to get you in, to be seen by ... and have these procedures done by ... the head of the Department, on an urgent basis. The department head revolutionized a technique called Endoscopic ultrasound that he'll also employ to poke around while we're all up in your grille:"
http://en.wikipedia.org/wiki/Endoscopic_ultrasound
"This should tell us if we're looking at pancreatic cancer."
They drew another nine tubes of blood after that. Along with a whole lot of Who Knows What, they're specifically looking for highly elevated CA-19-9 antigen levels:
http://en.wikipedia.org/wiki/Ca-19-9_antigen
No. You don't want THAT to be high, either.....
I picked up copies of the MRI images and report, and will schedule an appointment with the 2nd opinion liver-ologist with whom I met last week -- that would be the one who said, "Oh, no. You REALLY want the MRI to be negative. A positive finding on this MRI can only mean bad stuff."
I ate lunch at McDonald's. Candidly, I just figured ... why not ?
Post here journal, wait. They know so much more now. Also though liver is necessary to live, it is one of the few organs that offer a live transplant. Since a donor's liver minus a lobe will grow to fill the needs. The lobe transplanted can also grow to fill the needs.
My heart, my prayers and my understanding.
Jewell
So FEW of us have led lives completely untouched by Cancer. We start to become a bit more easy with the language, even if can never become okay with the reality of it.
While I'm certainly no wide-eyed optimist these days, I AM pretty practical and cold-blooded when it comes to medicine.
In my case, a cancer fits best. Everything else is a distant second. I'd need a LOT of luck -- the kind that's overlooked me for about five years, now ;-)
A blood test may come back soon, letting us know if it IS The Big C.
Otherwise ... probably 2-3wks before the ERCP is done, and pathology done on the samples they pull.
Cancer hits so many types, so many families, so many homes, so many people. It truly does NOT discriminate. I could rail about not yet being 50, but ... Cancer just doesn't care.
It's nothing personal. It's just cancer.
I wish you peace, health, and strength, Jewells ... in every step you take.
Just wanted to add my 2 cents here. I am so very sorry for all that you've been through, going through, and what might be coming.
I use to do medical transcription, so some of what you talked about, was familiar to me.
Also, do you realize what a good writer you are? Seriously good! Granted, I enjoy medical topics, but you make it interesting, and you have a sense of humor. I would imagine the writing is very cathartic for you, as well.
I understand you looking at this realistically, and given the circumstances, I'd do the same - but I hope you never lose ALL hope! I am wishing the best outcome possible for you David.