Anonymous letter to normal people

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
author unknown

My Cat Strange Habit

Fourth of July fireworks redoux

Better days

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Get your own

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This slide show goes back to better days, when Mister Gallbladder would regularly pump out enough bile for Bobby to actually eat chicharrone burritos. A thing of the past now. A slice of bacon or two per month is about all in that department getting down here lately. Fats. No good way to deal with fats. We do take a lot for granted.

"Win some , Lose some"

The scan is over. Commense glowing in the dark.Radioactive iodine, and the post ct scan doldrums from the contrast allergy are in full swing. I love the catch 22's you humans get to deal with. NPO before a test means the patient is almost sure to become a human pin cushion when they try to start an IV for a dual phase computed tomography. This was the case with Bobby yesterday. The nurse (male,... bummer) punted to the other nurse (female,... hooray) after four sticks, all missing the vein. The last one almost had our former beer drinker fainting. It must have something to do with anticipating one stick, but after three misses, panic starts to set in. For the patient as well as the nurse. You could see it all over his poor face. Two years ago for Sharon's brain decompression surgery, the anesthesiologist missed over 10 times. Bobby stopped counting at 10, and it took 20 minutes after that with 4 large men holding her down to get a large catheter in to her artery on her forearm. No blame on the doc, it wasn't in the card for him that day. Yesterday did not even come close to that kind of torture for Bob. Especially when you take in to account that he didn't crap out from the iodine contrast with was auto injected in to that carefully placed IV, and that the scans showed no liver cancer, which is a big risk now, and that at the end of the day, because the nice lady who placed his IV and did his scan asked him if he had any other tests later in the day, which he might need a blood draw, and they decide to keep the IV in just case. So, later after meeting with the WORLD FAMOUS HEPATOLOGIST he couldn't stop smiling, as they flushed out his hard won IV, and managed to draw fresh blood , 6 vials out of it, sparing any more punctures for one day. Win. As my old grand dad Juan D BillyBob used to say-"Unas veces se gana y otras se pierde" . Win some, lose some.

Before
After
Say Cheese!

CT time once again

I am beginning to feel a sense of deja vu. How about you? The last time the CT scan happened, Bobby got really sick presumably from the contrast, prednisone premedication, plus benydril, and Iodine contrast ( allergy). So, the doctors tried to have Bobby take a different kind of test this time, a stand up MRI. That was last month. He lasted 4 minutes in the machine before begging to be let loose. Pain. Squeezed me and SPLEEN Mc Queen big time...It was a combined spine/liver MRI. So, on Monday, he had an open scan MRI which looked like this...He tried something new. He took a small spray bottle from the cosmetics section of the grocery store, and filled it with water. He told the tech that he would have a much higher rate of success if he could wet his mouth with the spray bottle. She had no objections, except to say to please only spray when it was quiet. He did. No panic inducing dry mouth, or difficulty swallowing, gagging, or throat clearing. . None. At all. He held the spray bottle next to his mouth, and every thing was cool... and moist. Daughter hates that word, moist. Moist. But Moist is in a key player in Dr Horrible's sing along blog. Bobby's thing this summer. Big time. Freeze ray... stun ray... computer aided x ray. Tommorrow.
Be there, or be square. Bill.

Face book, the electric friendship generator

A ride through Barcelona in 1908

Amazing video.

Showdown

Somedays

it seems like a non stop showdown

between me ...

and him...

Mayo Clinic Researchers Develop Improved Tool to Rank Sickest Patients Waiting for Liver Transplants

Someone in Bobby's support group posted this article. They are going to add serum sodium levels to the MELD score calculator to help identify the sickest, and most urgent transplant candidates.

Kittens and hepatopulmonary syndrome

Today finds Bobby traveling to the Anschutz for the 3 month checkup with the pulmonologist. It's rather creepy for him, because of the three month checkup interval. HPS is very often progressive, and fatal, and sometimes a liver transplant is either not an option, or the transplant can take up to a year to clear up the vasodilations in the lungs. He has had a lot more headaches, including right now while he's typing this for me, but on a brighter note, he finally captures a coveted "Rweee"session from the kitten. BY STRAPPING THE VIDEO CAMERA TO HAS HAND AT BEDTIME LAST NIGHT! HA! this time he was ready and waiting for Sachi, the camera shy kitten. Slinky, beaniebaby-ish, and feathery soft, and most of all, camera shy. If he sees the camera, *POOF*, away goes the rweee and he slinks away silently. So, click below, and enjoy. P.S. Bobby has a lot of trouble with videos playing in this browser, and others say they have a hard time too, so--- if the video bogs down and wont play, just click on the video in the middle to have it take you straight to you tube, and if that doesn't work, click on robwalkingeagle's channel, and look for it there, and get a clean link. If any one knows why we have these problems with playing videos here please comment. Enjoy.

The spread of Hepatocracy

If I were running for office, here's what I would say.
As an active member of my party , I am a firm believer in Hepatocracy. That is, the hepatistic values of the Livertarian party have been kept, and held sacred. Once our values are allowed to be corrupted, then all is lost. Hepaticism is a valuable , and ancient belief. In ancient Greece, Hippocrates believed in it. The ancient Chinese knew how important a role the liver played in the total human experience. Later, in Europe, Laennec carried on the traditions of hepatocracy. Here, in Bobby's abdomen, let me just say, that because of the perseverance, and endurance of the party's values, this struggle is being waged from all sides. You've heard the saying "We hold these truths to be self evident that all men were created equal." But do you believe that all men's livers were created equal? If you believe that, then you are indeed gullible. In here, the politics of gastroenterology is a deadly struggle, a life and death FIGHT to survive despite all that stands in our way. You think you've seen corruption? You think you've seen inequality? Let me tell you something about inequality, when a kidney has to fight to survive despite it's big- fat- owner not having the smarts or self control to push the plate away, or go for a walk, or join a gym. NO, in here we, the organs of your body have to do everything we can to survive despite being genically predisposed to certain diseases, and the constant onslaught of life itself. A tax hike wont cut it in here, nor will tax cuts. Blood and guts isn't an R movie rating in here, it's reality. It's the truth. But you cant handle the truth!! SO YOU GO AHEAD AND EAT YOUR CAPTAIN CRUNCH AND DRINK THAT PEPSI AND VODKA FOR BREAKFAST, AND SLAM THOSE BEERS WITH YOUR CHICHARORON BURRITOS AND YOU IGNORRRRR YOURRRRR CHOLESTOROL
READINGGGGGGSS FROMMMM YOURRR LASSSSST PHYSICALLLLL AND EEEEEEEEYYYYYYYAAAAAAAAAAAAAAAAAAAAAAAAA...

ahhemmm. uuhhunggggggg.

I'm Billybob and I approve of this message.

The taste

Two years ago yesterday, Bobby kissed Sharon bye, grabbed his keys and headed out the door. He was on his way up to Golden, to Mount Olivet cemetery. He stopped on his way at a convenience store for a can of beer and a pack of smokes. Back then beer was not available on Sunday, except the watered down version, 3.2 beer, because of blue laws, or unless you went to the bar. Bobby and Sharon live one block from a bar, but he never took advantage of it. Only an alcoholic would do that. He bought a pack of cigarettes, and a 24 ounce can of Budweiser. The clerk handed him his change, and he wheeled out the door, the cemetery being only a couple of blocks west. He had taken his fishing chair with him, and expected to stay awhile. He dismounted from the truck, the cemetery was vacant. He could not see anybody else, it being Labor day weekend, and a Sunday, the sun was warm, but not too hot, and the sky had an autumn feel to it. . The fresh sod on her grave was taking hold now, and the fishing chair sunk in because the grass being overwatered. He adjusted it, and managed to stop sinking. He had already lost 50 pounds, The pain had changed in intensity over the last month, he had been trying to drown his emotional pain, but it increased his physical pain. That weekend, he had not drank any beer, unheard of for labor day weekend . He had been telling Sharon that he was close to quitting. Ardis dying had convinced him to. He didn't want to die like her. A year prior, his brother had questioned him at the request of Sharon, about weather he though he had a drinking problem or not. He had come up with a logical explanation to Jeff as to why he did not have a drinking problem. People who have problems cannot switch to 3.2 on Bronco game Sunday at dad's house, and they can't ever stop at one or two. Bobby had started buying 3.2 for the bronco game since becoming very very drunk during the Denver bronco's loss to the Jacksonville Jaguars a few years back, and enduring a lecture from his father. He was embarrassed, so he made it a point to never take regular beer over there again. But lately, even 3.2 beer was getting him very drunk, and he marveled at how amazing that was. So, he cracked this ice cold can of Bud, lit a smoke, and inhaled, and as he let out the smoke, he told himself to really take it in, the feeling. The taste. This was an experiment to really contemplate life and death. A taste test, if you will. Sitting here on Ardis' grave, pissed at almost everyone he knew because of his perception that no one really knew how much her death had destroyed him, he drank. He smoked. He knew that his liver was very sick. So far the doctors were all being fooled into thinking that I was fine, but Bobby knew better. Today, he enjoyed this feeling, and most of all, this taste. He had a saying back in his 20's that a cold beer, and a Marlboro were life's end all beat all, and that he wanted them as a dying wish. But today, he knew he would have to choose. If he chose the beer, he knew he would be giving up Sharon, but every time he had asked her if she was at the end of her rope, she just patiently said"not today, hun". She had been so patient in the weeks following Ardis death, especially since he was on a bender and he had never done this before. He was completely out of control. Like a car coming down a mountain with no brakes. He knew that choosing the beer meant choosing death.
He gathered his cigarette butts, his empty can, and paper bag, and sat in the bed of the truck for awhile. The equivalent of two cans of beer never used to have this effect, but he didn't feel safe to drive, so he waited. He waited the prescribed amount of time required by law. More proof of not being an alcoholic. When he got home, he didn't have any thing more to drink the rest of the night. Yet more proof. The next day after work, he bought another 15 pack of beer. He just wasn't done quite yet. Rock bottom loomed just 7 days away.

Arterial Blood Gas

these are Bobby's grandfathers
in the form of red blood cells (click to enlarge)

Bobby started having breathing problems years ago when he was hospitalized for shortness of breath and chest pain in 2003. His primary care doc was not surprised when her office was notified that he had been transported by an ambulance to a local hospital on valentines day. Sharon had been recently diagnosed with a host of problems and was on a wild roller coaster ride, trying to come up with a suitable treatment, and it would be almost a year before she found a good doc, and he got her somewhat stable. Now, after 3 different sleep studies, a pulmonary function test and a shunt study, he has hepatopulmonary syndrome. It is thought to be mild. But there is the key word. Mild. Mild has been the hallmark of this wildride from the git go. Don't ,whatever you do develop a severe case of this stuff or you might die of frustration. Mild is good for now. Mild means he cannot qualify for MELD exception points. The hitch is, that if it becomes worse, he will no longer be a candidate for a transplant, because HPS carries a poor prognosis after it progresses, and it is a progressive condition not dependent on the severity of the underlying disease. That means it can get worse even if the liver disease does not. Because it is thought to be a result of chemicals responsible for dilating blood vessels, it can just keep getting worse and worse. The red blood cells cannot reach the oxygen because the blood vessel is now too big around, and the blood is now going too fast. That is how the doctor explained it. He feels himself suffocating at times, even with his oxygen turned on, and he told De Wippersnapper pulmonologist that he didnt care if they say it's considered mild on paper, he cant breath. His chest pain started to ease a bit after being on the oxygen for a while, thank God, but there are still times he will wake with chest pain. The restaurant up the street, Casa del Rey, has green chili in three heats, Mild, Medium and Hot. Only there, the mild aint so mild either. And mild rhymes with wild, and beguiled.

The basement at UCDHSC

This is the basement at what was called UCDHSC. It was the university of Colorado at Denver health sciences center. This photo was taken when Ardis was an inpatient there in July 06, Bobby swiped a chair from transport, put her room number on it, and her name, and wheeled her around the hospital during the long 4th of July holiday of 06. They put a hundred miles on that chair. The 4th was on a Tuesday, she had came by ambulance on Friday before, and the hospital was a deserted place until much later the following week. There is something about this hallway that brings about the strangest deja vu. It used to be called Colorado General hospital. Sharon's mother did a stint here as an RN in 1957, and Bobby had surgery there as an infant to create tear ducts. He was born without them. He had a separate surgery to correct crossed eyes at two or three years old. Bobby can remember this hallway amazingly, because he was 9 months old for the first surgery, two years old for the second. That would be January 1964. The hospital is gone now , moved to the campus of what used to be Fitsimmons Army medical center, in Aurora Colo., and is housed in the new Anschutz inpatient pavillion, a state of the art facility. But he can remember this hallway. It's kinda freaky, but it's gone now.
Anschutz

Prometheus and the Eagle of Zeus

Each day, Prometheus would be tormented by Zeus’ eagle as it tore at his immortal flesh and tried to devour his liver. Each night, as the frost bit it’s way into his sleep, the torn flesh would mend so the eagle could begin anew at the first touch of Eos (the Dawn).
Isn't it strange how an ancient civilization knew of my potential healing power? Who were these Greeks, and did they have baklava and calamata olives back then? It is funny that the magic substance in the movie 'My big fat greek wedding', windex is ammonia, the bane of Bobby's brain. But Bobby and Sharon have adjusted by eating much more vegetables around here. The health food store Whole foods is getting all the money the liquor store used to. They do have bakalava, and 100 types of calamata olives. Every week, Sharon and Bobby go and stock up on dried fruit, salt free corn chips, the best gyoza in the world, (and that includes the little yakitori shop Iseya in KichiJoji , Tokyo), and the yummy low sodium organic peanut butter cereal. Bobby first found these cereals because Ardis needed gluten free everything. But this cereal rocks. Mister stomach loves it.
Now if we could find a way to keep Spleen Mcqueen quiet. Then there would be some peace around here. Yeah I know, my capsule is not blameless, but the racket with the big ol noisy spleen, the noggin, mister colon,
well it's just a rowdy mess. Speaking of which, these Greeks have morphine named after their God, Morpheus, the God of dreams. Hmm...Maybe this is all just a dream.

Summer of 2006- Catching up

Bobby had a gig down in lower downtown on June 16, a Friday night. Only his third gig as a country western drummer. The band's name was Cars n Trucks. It was a great gig. In the morning, noticing a sharp stabbing in his right side, he got up, got dressed, and headed out to go over Ardis' apartment and get her up, cleaned up, fed, walk the dog, fix her something gluten free, stock all the cupboards with schnapps, and make sure her New Grist stock was full.New Grist is a new gluten free beer. Made with sorghum and rice. Very tasty. Her ceiliac's disease

rash, dermatitis herpitaformis had virtually disappeared. Bobby noticed a tugging sensation in his side. A fullness. Later that day, the tugging feeling turned into a horrible painful feeling like a cramp. He called Tom to ask him if livers could hurt, but Tom thought maybe Bobby had just pulled a muscle. Ardis greeted him as always with a smile, and they talked about how well the little bonsai trees he had bought her were doing. He had gone to a special nursery to buy her 5 mature trees, each no more than 7 inches tall. He made sure she had something or dinner she could stick in the microwave, moved 6 beers from the case to the fridge, and walked the dog one
more time. He always walked the dog first and last because he wouldn't be over here until morning, and the scenario would repeat itself over and over every day. But 10 days later, he came after work, and she hadn't done very well getting to the bathroom. At this point Sharon had bought her 4 sets of sheets, (with Ardis' money from SSDI) and he just made up the bed with a fresh set, and put her soiled ones into a bag to take home. Her mental status being so poor, he did the routine diaper check, and realized he had a daunting task ahead, because she was taking the powerful laxative lactulose every 6 hours for encephalopathy, had made the mother of all messes, and did the best
she could to change herself, but she was not cleaned up, and she needed some serious perenial care in order to not get severely sick. So, he went about the task the best he could and she hollered, and moaned, but he had her bottom spic and span 45 minutes later. While he was cleaning her up, he asked her why couldn't he check into some kind of nursing care for her, but all he got was" don't you have any heart?". This was repeated for 4 days in a row. Even the daunting perenieum. 6 months ago this would have been so strange but she was malliable like his
daughter when she was a toddler. In fact he imagined it was San Diego back in 85 when Kelly was in diapers, same concerns, the irony was heavy. He could see that she had not been drinking very much of anything including beer or water in the last 3 or 4 days, really since they had successfully taken her up to golden gate park for a picnic, and he tugged her skin, and it didn't spring back very fast, and he looked into her eyes, and they looked a dull grey instead of the normal Santa Catalina Island blue. He thought, she is dehydrated, and asked her if he could take her to the ER, and she relented and said yes. He got on the cell phone and called the non
emergency number, and asked them if they could send fire rescue to get his sick friend to University hospital, but he didn't want them to come lights and sirens, and risk lives by doing so. They came and took her to the hospital. Bobby quit drinking cold turkey then, that 4th of July. in the morning in front of brother Jeff's house as the moving van was being packed to the gills,
someone offered him a cold beer. He declined and the smell of it made him nauseated. Later that day, having left the movers to be back in the ICU with Ardis, he took the elevator down to the gift shop. The floor felt like it was heaving under his feet. He got back on the elevator with Big Red in his clutches,
BIG RED
and as the elevator doors closed he had a thought. Shit! I caught up to her! How could I have caught up to her? He knew after that that his worst fear had come true.
Ardis in the ICU JULY 2006
He had caught up to her. On the 4th of July 2006, I was completely inflamed with alcoholic hepatitis, superimposed over the chronic scarring. He had caught up to her, but not now, long ago. Those severe nosebleeds the November before Ardis had moved out, where he came home looking like someone who had been stabbed, covered with dried blood. He had started bleeding at a work thanksgiving dinner party, and struggled for over an hour to get his nose to stop bleeding. That was a sign he had missed until now, 6 months later, he was having bloody stools. Every day. Bobby went to see his doctor a week later, and told her that he had caught up to Ardis. It would be 5 months later, two ct scans, a hyda scan, two ultrasounds, one EDG and finally a laproscopic cholesystectomy with a liver biopsy before it went on paper. And the wild ride began.