Leo

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Our neighbor Leo is going through a lot of pain in his life – this past week he was hooked up to Oxygen, and it appears that he will be on that until he passes away.  He is the first to admit it – – he smoked like a chimney most of his life, and that’s the reason he has lung cancer.  It’s difficult to accept, but he’s hanging in like a trooper.
 
This morning I saw him sitting out in front of his trailer taking in some sun, watching the neighborhood come awake, so I walked over and yakked a bit with him.  He’s very unhappy about the the Oxygen, and I don’t blame him a bit.  So, now he turns off the Oxygen and has a smoke once in awhile.  “Hey, I’m dying anyway, so what the hell,” he commented this morning.  …can’t say I blame him. 
 
I just helped convince him into turning the Oxygen off when he’s taking a drag, ’cause I don’t really want to blow up with him!  He said he would do that out of kindness to us!
 
Leo doesn’t have much time left in the world and he knows it. 
 
He’s a terrific guy, has a great sense of humor, and I feel blessed to have met him and made friends.  Perhaps he’ll get lucky – – you never know.  If there was a person whom I wish GOOD luck for – it’s him.
 
See you tomorrow, Leo.
 
 
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Catch 22

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Man with Two Faces

Man with Two Faces...it's not an easy road to travel when you're too sick to work, but have no choice...

 
Catch 22 . . .For those who are ill and unemployed, you end up in a vicious “Catch 22” circle of momentum that just adds to the stress, and decreases your chance of keeping your head on straight.
 
Throughout the past 12 months Richard has had to continue looking for work no matter how lousy he feels.  It’s taken a toll on him physically and emotionally.  Trying to keep your spirits “up” and a smile plastered on your grey or white face (depending upon how sick you’re feeling that particular day), is extremely difficult.   But, sometimes in life you just have no choices over stuff…

The Wonder of One Year…

This past year has been one with much pain – physical, mental, and emotional.  Our health took a huge turn for the worse.  Suffering physical illness together is something that is kinda’ impossible to describe (let alone understand in the the first place).  We have a partial understanding, partial diagnosis, and complete fear and pain.  And, weirdly enough we’re doing it together.

If you have hit this page because you are dying – – and would like to find some places to visit on the web or books to read, we’re going to put them up on a separate posting with links and reviews for the different places on-line or hard-copy books that may help you.

And, we hope that you’ll be willing to reply with sharing some of your favorites too.  Life is a bumpy ride, but we think you’ll agree that dying is one of the events that we didn’t sit around planning for and arranging.  So…we live with quite a bit of confusion and fear once we find out that we’re on the ride. 

This “ticket to ride” was provided as a one-way ticket; and that’s not the easiest message. 

2011 has been a year of many losses for us.  Now, 2012 has arrived, and we are limping down the road together; grateful for the love we have for each other and the ability to be open and honest with each other about our feelings.  Each night as I fall asleep, I kiss Richard’s cheek, and whisper my love to him and he whispers the same message back.  We pray that we will both awaken the next morning in each other’s arms.  Although the pain sucks, we would still rather endure the pain than lose our life in the night.

It’s sad.  I cry….although the tears won’t solve our illness, they do sometimes help me move through the pain and back to the job of living.  So, I don’t think we should get down on ourselves for crying or being emotional.  After all, feelings have to be acknowledged and understood. 

Later this week, look for a posting of Links and Resources on Dying.  We hope that they will be helpful and bring some peace to your life – as they have for us.

Now, we’re looking at 2012.  Square in the face.  Wonder what it will bring.

A Few Dumb Quotes Applicable to the Craziness

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Here are just a few supid and sometimes frightening quotes:

Number One:  “In Haig’s presence, Henry Kissinger referred pointedly to military men as ‘dumb, stupid animals to be used’ as pawns for foreign policy.”  — Bob Woodward & Carl Bernstein, The Final Days, p. 208

Thanks Henry.  I doubt you would win a humanity award at the next Rotary Club pow-wow…but then, perhaps you would…Attitudes have changed about the value of human beings; have you noticed?

Number Two: “So?” —Vice President Dick Cheney, responding to an ABC News correspondent who cited a poll showing that most Americans do not believe the Iraq War was worth fighting, March 19, 2008 

Number Three:  “Make it a hundred…That would be fine with me.” –John McCain, to a questioner who asked if he supported President Bush’s vision for keeping U.S. troops in Iraq for 50 years, Derry, New Hampshire, Jan. 3, 2008

Now that McCain is sleeping on his new Serta Extrasoft  mattress – what the hell… Good grief,  John, you obviously have a  kissshort memory of the years you were a POW

Number Four: “Death has a tendency to encourage a depressing view of war.” – Donald Rumsfeld

Donald…always strategic thoughts and so bloody intelligent…don’t you think!?

 

Time Capsule – 3 Years Ago

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Three years ago we became very ill – diarrhea, vomiting and a lot of pain; I lost about 50 pounds in one year.  Both of us were referred to the “Gods of UCLA,” and that got us absolutely no-where except handily emptied our pockets. Between the two of us we have had approximately 100 different tests, from urinalysis to capsule endoscopies, colonoscopies, and so many more exams that we’ve lost count.

After two years we stopped the endless cycle of examinations, and are learning how to simply survive day to day and limp through this with pallative care.

We know that we are not alone.  Dying is a fact of life.  A one-way ticket was issued to each of us the moment we were born.   Just one thing though: There’s no date and time stamp on it.

There are many people in the world who go through hell before dying.  Some go peacefully, some not too gracefully…but none-the-less, we are all on that journey to our last breath. We have several things in common with our fellow-human beings:  birth and death.  (Not everyone pays taxes from what we’ve heard!).

For the past three years we have fought the reality of our condition.  We have found out about the painful realization that yes, it’s true . . . doctors often “practice” medicine.  They make mistakes.  Nurses and other health care workers can be careless, inconsiderate, and rude. I swear some of the doctors and nurses who we have met must religiously watch the television show “House,” and try very hard to imitate his behavior.

Lucky for us, we have found a doctor who has been trying her very, very best to help us cope.  She can’t and won’t guess what is wrong with us.  We appreciate the honesty.  It’s difficult to accept, though.  So, the records show that we are suffering from chronic bla-bla-bla which will put us either under or sprinkled near dirt…from dust to dust, from ashes to ashes.

All we know is that we have heavy metal poisoning (Patti: Uranium U-238/depleted uranium – and Richard has an extremely high level – off the charts level  – of Tungsten.) Oh, let’s not forget…we both have a goodly dash of Arsenic in the test results.

We live on opium to control pain, tincture of opium to control the diahrrea; and many other pain killers –if we had to pay on the open market, our pain killers and other medicines to keep us from shitting to death immediately, etc. – the cost is approximately $6,000.00 A MONTH PER PERSON.  Isn’t that crazy?

Today we know we have very, little time left on planet earth.  So, that’s our situation.  We can (and do) whine, cry, and wish for a life very different than this.  But, that’s not apparently in the cards.

Richard and I have been together for 20+ years and our love is sure and solid.  It may seem odd that we have the same thing (uranium and tungsten are an isotope apart – same thing; just a tiny dot apart.); yes, while it appears weird that we have the same thing, it’s not because of our past history together …

Our belief of how we got heavy metal poisoning is because we worked on three U.S. military bases where we were exposed to poisoning – both in work and in play.  Work of course, and then scuba diving on the Kwajalein atolls (ocean side and in the lagoons), Kosrae, Pompei, Ant Atoll, all areas of Bali (Indonesia), Morhea (Tahiti), Fiji (a variety of locations and islands), Mexico – Cabo San Lucas and the wild underwater habitat, the blue holes of the Bahamas on Andros.  Gosh, I’ve lost count – there’s more, but I can’t remember all of the scuba jaunts.

Military bases:

  • NUWC – Naval Undersea Warfare Center, Andros Island, Bahamas
  • USAKA – Army Base, Kwajalein, Marshall Islands
  • Yuma Proving Grounds, Yuma, Arizona, USA

Commonality of things at these military bases was …. Drum roll …heavy metal poisoning…

It’s very common for this type of poisoning to lurk in your body tissues, bones, bone marrow and the vast areas of our systems without showing much, if any, evidence of problems.  And, then, “bam,” the poisoning can be set off by something introduced into the system – creating extreme illness and then…death.

So – there’s a little bit of information about who we are and where we’re gioing.  The physical realities of our poisoning went from gradual changes to worse very quickly, so we’re very aware that we do not have much time left on our clocks.  The morphine, opium and all the other drugs aren’t “doing the trick anymore” and we both experience “break-through” pain.  When the tick-tocking got faster and faster, we made a deal with each other that we are going to enforce DNR with a vengence,  The other day I saw a picture of a woman who actually had those initials tatooed onto her chest. I think that’s just a bit extreme, but, each to his or her own,..strange as it seems!

Why this blog?  Because we want to get this information out there.

We believe that this world is dying by our own hand.  We have to stop this.  Humans are destroying life.  The destruction that we are creating is inexcusable.  What we have is a form of what is known as “Gulf War Syndrome” – and now the addition to the mix in the form of depleted uranium and tungsten poisoning is killing off thousands of people in both the military and civilian contractor worlds of work.

Very Bad Things Are Happening to Decent People

 

 

Poisoning, et al

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Almost 3 years and we are still “living” through the heavy metal  poisoning.  There are days that I cannot get out of bed (usually!), and other days when I feel a little better, and am able to motor through the day without too much pain.

Uranium and tungsten poisoning appear to be “sister poisoning.”  They are very close to each other in the way that they harm your body.  Yesterday we were talking about this and all of the research we have done through the years…we figure that collectively we have done about 10,900 hours of research – trying to figure out what, why, possible cures, , etc. etc. 

That’s a whole heck of a lot of reading and studying. 

Personally, I have finally given up.  Just last week  we looked seriously into transplanting.  After a bunch of reading and calling places that run clinicals for transplants we realized that this was nutso!  Why continue doing something like this for years and years?  Yes, we want to be cured…oh so bad…but to have our bodies sliced open from stem to stern with  only HOPE  – it’s not sensible.  I read somewhere that this particular procedure has very little  potential for success.  Approximately 17 people have had the procedure, and about 3 people have survived.  Not very good odds, huh?

Scratch that one off the list.

Opium – Patches, Pills, Liquid

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Unfortunately we have to deal with our pain with the use of medications.  In our case, our pain is contained mostly with opium and morphine.  I hate the feeling of the drugs.  It’s difficult to think straight.  I can’t believe people actually get addicted to these drugs and ENJOY them.  I think that’s weird!

There are times that I cry when I know that I’ve got to take opium or whatever drug needed to contain the pain.  I cry because I don’t like to feel the “creepies” of the medicines.  Pain management is not an easy deal for a patient.  I wonder what doctors and nurses feel about it…do they understand what their patients feel?

About 4-1/2 years ago I was mis-diagnosed with epilepsy.- had what looked like a seizure …I ended up getting dumped into the ER of one of the famous hospitals in Las Vegas . . . known for it’s extra specialty capabilities of being one of the worst  in the world.  Immediately they poured Dilantin into me – ASSUMING that I had epilepsy.  We were naive and took the words of several neurology “specialists,” and for 1-1/2 years after that, I had seizures constantly inspite of the medication – at one point I was taking 26 pills day simply to “stave off” seizures.  After many hospital ER emergency visits, being practically brain dead but trying so hard everyday to keep going to work, doing the best I could do – I felt that I was dying.

I was.

At one hospital emergency visit in the dead of night a neurologist reviewed my case and came into my room in the ER.  He said, “Patti, I don’t think you have epilepsy and I want to find out what you DO have and get you fixed.” 

From there he put me into a neurology ward, took me slowly off the epilepsi drugs I was plowed with, and in about 5 days I left the hospital. ..without seizures.  I will always believe this doctor saved my life.  He spent time and researched about my case, he ran tests, and most of all CARED.

————

Now today Richard and I have been diagnosed with uranium, tungsten, and arsenic poisoning.  Frightening and so weird.  Three years ago our symptoms started.

Here’s a good one:  we have identical symptoms.  But the doctors have determined that we have different medical conditions.  What a hoot.  At the start of testing they said that Richard has carcinoid tumors and I possibly had HIV.

Well, if that were the case, I think we would be on the front page of the newspaper – “Couple Has Identical Symptoms Yet Have Completely Different Diseases.”