Saturday, September 15, 2012

AA Birthday Number 6 and "The Taste", revisited

Welcome to Billybob's Wildride! There will probably be a bunch of first time wild riders since Bobby plans to post this on Facebook for the first time, So let me introduce myself. I am Billybob, the wacky liver living in Bobby's upper left quadrant. Bobby started the "wildride" back in '07 to vent and communicate to people about the *wild ride*, but hardly ever posts on here anymore. Unless a CT scan comes back positive for a liver tumor, or bone tumor, or when he has some additional strange and bizarre medical diagnosis, and the once a year AA birthday. Which is today. Number 6. -6 years or 2192 days or 52,608 hours or 3,156,480 minutes...without a beer!! (or any other alcohol)
So, to celebrate number 6, we are going to repost one way back from AA birthday number 2. Happy birthday, you big ol' lunker, and many more to come! Love, Billybob , the Lung brothers, mister HEART, the Gutz family, Mr. Spleen Mcqueen, Kidney one and Kidney two, "the Zombie monster" rib tumor, De Quervains pains, and all the Piggies who went to market!

THE TASTE- by Billybob September 1, 2008

Six years and two weeks ago, Bobby kissed Sharon bye, grabbed his keys and headed out the door. He was on his way up to Golden, to Mount Olivet cemetery to visit Ardis' grave for just the second time. 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, right? 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, beginning to knit after just 3 weeks. The fishing chair sunk in to the ground because the grass being over watered. He adjusted it, and managed to stop sinking. He had already lost 50 pounds on his way to lose a total of over one hundred in just 4 months. The abdominal pain had changed in intensity over the last month. It felt as if a dirty brick had been surgically placed in his abdomen. Every movement and vibration hurt.

He had been trying to drown his emotional pain, but it increased his physical pain. It burned now. That weekend, he had not drunk 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 quit. 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 real drinking problems can't switch to 3.2 on Bronco Sunday at dad's house, and they can't ever stop at just one or two, right? 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 by it, so he made it a point to never take regular beer over there again. But lately, even 3.2 beer was getting him 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 the whole world because of his false perception that no one really knew or cared how much her death had destroyed him and Sharon, he drank. He smoked.

He knew that his liver (me) 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. Just for a while longer. 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 recently 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 real bender and he had never done this before. He felt 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,right? When he got home, he didn't have any thing more to drink the rest of the night. Yet more proof. Heh. 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.
Bobby at Lutheran hospital-September 15, 2006

Post script: when Bobby did finally quit for good, he ran in to big trouble. Not knowing anything
about the "DT's" or "the shakes" , he developed alcohol withdrawal syndrome and was hospitalized for 4 days in serious condition with Delerium Tremens, (Latin for "shaking frenzy") a potentially fatal condition resulting from rapid cessation of drinking alcohol. If you or a loved one has a drinking problem, NEVER try to quit drinking cold turkey.
Excerpt from Elsevier Health Sciences:Withdrawal from other drugs which are not sedative-hypnotics such as caffeine, cocaine, opioids, etc. do not have major medical complications, and are not life-threatening. Withdrawal reactions as a result of physical dependence on alcohol is the most dangerous and can be fatal.

Saturday, April 14, 2012

De Quervain's Pains

Educational video describing the condition known as De Quervain's Syndrome.

Sunday, December 25, 2011

Merry Christmas to all

Please click image to enlarge it and get full effect

Friday, September 23, 2011

Saturday, August 6, 2011

The time of Bitter and Sweet

This time of year is filled with anniversaries. Some are sad , some are happy.

Ardis died on August 3, 2006.

After Ardis died, Bobby quit drinking on September 15, 2006.

Bobby and Sharon were married September 21, 1990.

Sharon's mom died on September 19, 1998.

Terror happened on September 11, 2001.

Liberty died in September 2008.

--------------------"the death of liberty", B Aragon 2010-------------------------

Thursday, February 10, 2011

CELLS GONE WILD-diagnosing liver cancer

Here is a pretty good article about diagnosing Hepato Cellular Carcinoma, also known as LIVER CANCER, or Primary Liver Cancer, as apposed to secondary Liver Cancer aka liver metastases.
It seems to this liver that the techneque to diagnose these CELLS GONE WILD is as much art as it is science, and even maybe a small dose of VOODOO thrown in for good/bad measure.

Any way the LUMP being hunted and stalked by the hepatology department at CU, headed by the World Famous Hepatologist Jane Berman (name changed to protect the innocent)
is still at large, not being called an HCC and not seen clearly due to technical matters, which are detailed in the linked article. So, if you are a friend or daughter, or mother/dad, or sister or brother of the same human family as billybob belongs to, and you are curious what the hairy hell Bobby is talking about when the subject comes up, just check out the part on "washout" as far as the CT scan is concerned... Think about why Sawyer's Mommy doesn't drink from his bottle and employs the super cool bottle cap trick, to avoid washout... Liver nodules which have scar tissue, can flood with the blood which is not dyed by iodine, mixing it with dyed blood, at the precise moment they are supposed to light up like the Vegas strip, because of an auto injection of radioactive iodine, they get "washout", and they hide from the camera. It seems that this is the only time during a CT scan this could occur in the whole human body. Scarred livers have blood flowing in all kinds of crazy directions. Dual phase CT scan is supposed to take pictures of non radio active tissue and then it takes pictures of the same tissue a moment later with a shot of that iodine, to light it up all the blood vessels... but in order to see a small just forming tumor, it has to be snapped at just the right moment, and the body rides through the scanner for several seconds, moving, and by the time the camera catches the part where the suspected tumor is located, the dye may have "washed out". Portal hypertension in action. Backward blood flow.

Here is what the radiologist said about it-copied in shortened version:

The vague hypodensity bulging the capsule in the left lateral segment anteriorly, best seen on series 9 image #38 is not significantly changed. No lesion here is more conspicuous on delayed imaging suggesting possible early washout. Additionally, there is vague mottled hypodensity throughout the right lobe of the liver.
1. No change in subtle left lobe of the liver lateral segment anterior hypodensity which may have early washout. Diagnostic considerations include regenerative nodules after infarct, focal fatty infiltration, although mass cannot be excluded, given recent normal ultrasound and stability, this is felt to be less likely.

What else is there to say, lol.

Monday, November 22, 2010

Update-FOGMACHINES is now AC

Forget all the other letters in the Mnemonic word FOGMACHINES. There are two left according to a new radioiligist describing the Skeletal survey. Bombarded with a hundred zillion x rays of just about every single bone,
There was a different opinion from that of the original reporting radiologist.
This one felt that the Lytic lesion is actually a single solitary expansile lesion. Expansile lesions are not the same animal as the lytic type. The Greek word for Lytic actually means "to separate" or break down, as in destroy.
Expansile has a less scary meaning compared to lytic. Both could be bad, especially in the presence of this much pain...More important, the radiologist describes a lesion which is non agressive in appearance, in other words a well defined sclerotic border, instead of the more scary ill defined squiggly lines of a cancerous bone tumor.

The two letter which are left are

Aneurysmal bone cyst



Where we go from here, nobody knows. The only thing we do know is... OW.

Wednesday, November 10, 2010

Let's Get Mnemonic

When you see lytic bone lesion think of FOGMACHINE.

Differential Diagnosis (Mnemonic = FOGMACHINES)
F = Fibrous Dysplasia
O = Osteoblastoma
G = Giant Cell Tumour
M = Metastasis / Myeloma
A = Aneurysmal Bone Cyst
C = Chondroblastoma
H = Hyperparathyroidism(brown tumours)/ Hemangioma
I = Infection
N = Non-ossifying Fibroma
E = Eosinophilic Granuloma / Enchondroma
S = Solitary Bone Cyst

11 choices, spin that wheel, where it stops, you'll still get the bill!

Friday, November 5, 2010

Full x-ray inventory of the skeleton and a rib biopsy

Next up: there will be full x-ray inventory of the skeleton and a rib biopsy.

The plot thickens. There is a suspicious lesion on the liver. There is a suspicious hideous looking lytic lesion on the left anterolateral seventh rib, which feels like a hot nail being driven in to the hilt. This rivals the notorious bone chip in the jaw bone, hunting season 2002, after a deep root cleaning by the worlds most nazi-like dentist ( who shall remain nameless). It is certain that the hygenist broke the rim of the molar and the fragment stayed down in there between the jaw and the gums until it worked it's way out of the bottom of the gumline a month later, after many dreams about being Steve Buscemi in "Fargo"...

"They froozhen shot me!!"
Now the recurring dream is of Wade Gustafson, saying to Carl Showalter "No money, no Jean!"..."No money, no Jean!"...and then he shot Carl Showalter (Steve Bucemi) in the face after Carl shoots him in the left anterolateral seventh rib....

Friday, October 22, 2010

Jumping the Gun

Well, we got ahead of ourselves. The radiologist reading the ultrasound felt that this "suspicious mass" thing was just a big wad of liver (regeneration macro-nodule)which had developed a covering of scar tissue around it, and there was no reason for concern. The Hepatologists of the University round table did not feel like taking a chance, so they have NOT ruled out a cancer, and there will be more CT scans at the very least. The interest here is that this mass is the perfect size,were it to turn out to be malignant to indicate for a liver transplant. The liver doctor of great fame said that he hoped that he would never have to drop me into a bucket of formaldahyde, something I also hope, and Bobby and Sharon too. Status quo will do just fine , thanks. Repeat CT scans. Nice boring CT scans. Boring is good. Just a suspicious mass. To quote Ahnohhld in kindergartner cop, "It's NOT a TOOMAH!"

Wednesday, October 13, 2010

The Chilean Miners and Billybob's Ultrasound report

Bob got the CT scan report a day before his 4 year sobriety birthday, Sept 14, 2010. None of his previous test results have ever suggested metatastic cancer as a possible out come . I mean after it spreads, you ARE pretty screwed , right? Maybe if it is caught just as it begins to spread, but by the time it starts eating your bones, you are doomed, right? Who knows. I dont. For I am a liver. I am the liver in question, and tonight as they pulled the last of the miners out of the doom below, we got more good news: that there is no reason for concern. The ultrasound results show no reason for concern. There is no cancer in here. Now they just need to find out what is eating holes in Bobby's rib. Pass the pain receptors. OW.

Sunday, October 3, 2010

Recent CT scan results

1. Findings consistent with cirrhosis. No evidence of cellular carcinoma. Patchy hypodensity in the right lobe of liver and a more focal subtle lesion with mild mass effect lateral segment left lobe liver measuring 3.1 cm in diameter, more conspicuous and slightly larger compared to 6-16-10 when it measured 2.8 centimeters in diameter. Recommend correlation with ultrasound and dynamic MR.
2. Slowly enlarging lytic lesion of the anterolateral left seventh rib. Considerations include fibrous dysplasia, aneurysmal bone cyst, myeloma and metastasis. Recommend further evaluation
Kind of scary. Metastasis?!?!?!?! WTF!!!!!

Monday, September 27, 2010

Happy anniversary

Happy happy anniversary to Sharon and Bobby, who celebrated there 20th wedding annivarsary on September 21. He saw this post from Susan, and had to shout out.
What a funny coincedence! Happy happy anniversary to you both as well. PS- Sharon always though that her and Bobby were the only ones who Earth Wind and Fire wrote this song for!

Sunday, August 8, 2010

I, Pensil

I am a lead pencil—the ordinary wooden pencil familiar to all boys and girls and adults who can read and write.*


Writing is both my vocation and my avocation; that's all I do.


You may wonder why I should write a genealogy. Well, to begin with, my story is interesting. And, next, I am a mystery—more so than a tree or a sunset or even a flash of lightning. But, sadly, I am taken for granted by those who use me, as if I were a mere incident and without background. This supercilious attitude relegates me to the level of the commonplace. This is a species of the grievous error in which mankind cannot too long persist without peril. For, the wise G. K. Chesterton observed, "We are perishing for want of wonder, not for want of wonders."


I, Pencil, simple though I appear to be, merit your wonder and awe, a claim I shall attempt to prove. In fact, if you can understand me—no, that's too much to ask of anyone—if you can become aware of the miraculousness which I symbolize, you can help save the freedom mankind is so unhappily losing. I have a profound lesson to teach. And I can teach this lesson better than can an automobile or an airplane or a mechanical dishwasher because—well, because I am seemingly so simple.


Simple? Yet, not a single person on the face of this earth knows how to make me. This sounds fantastic, doesn't it? Especially when it is realized that there are about one and one-half billion of my kind produced in the U.S.A. each year.


Pick me up and look me over. What do you see? Not much meets the eye—there's some wood, lacquer, the printed labeling, graphite lead, a bit of metal, and an eraser.

Innumerable Antecedents


Just as you cannot trace your family tree back very far, so is it impossible for me to name and explain all my antecedents. But I would like to suggest enough of them to impress upon you the richness and complexity of my background.


My family tree begins with what in fact is a tree, a cedar of straight grain that grows in Northern California and Oregon. Now contemplate all the saws and trucks and rope and the countless other gear used in harvesting and carting the cedar logs to the railroad siding. Think of all the persons and the numberless skills that went into their fabrication: the mining of ore, the making of steel and its refinement into saws, axes, motors; the growing of hemp and bringing it through all the stages to heavy and strong rope; the logging camps with their beds and mess halls, the cookery and the raising of all the foods. Why, untold thousands of persons had a hand in every cup of coffee the loggers drink!


The logs are shipped to a mill in San Leandro, California. Can you imagine the individuals who make flat cars and rails and railroad engines and who construct and install the communication systems incidental thereto? These legions are among my antecedents.


Consider the millwork in San Leandro. The cedar logs are cut into small, pencil-length slats less than one-fourth of an inch in thickness. These are kiln dried and then tinted for the same reason women put rouge on their faces. People prefer that I look pretty, not a pallid white. The slats are waxed and kiln dried again. How many skills went into the making of the tint and the kilns, into supplying the heat, the light and power, the belts, motors, and all the other things a mill requires? Sweepers in the mill among my ancestors? Yes, and included are the men who poured the concrete for the dam of a Pacific Gas & Electric Company hydroplant which supplies the mill's power!


Don't overlook the ancestors present and distant who have a hand in transporting sixty carloads of slats across the nation.


Once in the pencil factory—$4,000,000 in machinery and building, all capital accumulated by thrifty and saving parents of mine—each slat is given eight grooves by a complex machine, after which another machine lays leads in every other slat, applies glue, and places another slat atop—a lead sandwich, so to speak. Seven brothers and I are mechanically carved from this "wood-clinched" sandwich.


My "lead" itself—it contains no lead at all—is complex. The graphite is mined in Ceylon. Consider these miners and those who make their many tools and the makers of the paper sacks in which the graphite is shipped and those who make the string that ties the sacks and those who put them aboard ships and those who make the ships. Even the lighthouse keepers along the way assisted in my birth—and the harbor pilots.


The graphite is mixed with clay from Mississippi in which ammonium hydroxide is used in the refining process. Then wetting agents are added such as sulfonated tallow—animal fats chemically reacted with sulfuric acid. After passing through numerous machines, the mixture finally appears as endless extrusions—as from a sausage grinder-cut to size, dried, and baked for several hours at 1,850 degrees Fahrenheit. To increase their strength and smoothness the leads are then treated with a hot mixture which includes candelilla wax from Mexico, paraffin wax, and hydrogenated natural fats.


My cedar receives six coats of lacquer. Do you know all the ingredients of lacquer? Who would think that the growers of castor beans and the refiners of castor oil are a part of it? They are. Why, even the processes by which the lacquer is made a beautiful yellow involve the skills of more persons than one can enumerate!


Observe the labeling. That's a film formed by applying heat to carbon black mixed with resins. How do you make resins and what, pray, is carbon black?


My bit of metal—the ferrule—is brass. Think of all the persons who mine zinc and copper and those who have the skills to make shiny sheet brass from these products of nature. Those black rings on my ferrule are black nickel. What is black nickel and how is it applied? The complete story of why the center of my ferrule has no black nickel on it would take pages to explain.


Then there's my crowning glory, inelegantly referred to in the trade as "the plug," the part man uses to erase the errors he makes with me. An ingredient called "factice" is what does the erasing. It is a rubber-like product made by reacting rape-seed oil from the Dutch East Indies with sulfur chloride. Rubber, contrary to the common notion, is only for binding purposes. Then, too, there are numerous vulcanizing and accelerating agents. The pumice comes from Italy; and the pigment which gives "the plug" its color is cadmium sulfide.

No One Knows


Does anyone wish to challenge my earlier assertion that no single person on the face of this earth knows how to make me?


Actually, millions of human beings have had a hand in my creation, no one of whom even knows more than a very few of the others. Now, you may say that I go too far in relating the picker of a coffee berry in far off Brazil and food growers elsewhere to my creation; that this is an extreme position. I shall stand by my claim. There isn't a single person in all these millions, including the president of the pencil company, who contributes more than a tiny, infinitesimal bit of know-how. From the standpoint of know-how the only difference between the miner of graphite in Ceylon and the logger in Oregon is in the type of know-how. Neither the miner nor the logger can be dispensed with, any more than can the chemist at the factory or the worker in the oil field—paraffin being a by-product of petroleum.


Here is an astounding fact: Neither the worker in the oil field nor the chemist nor the digger of graphite or clay nor any who mans or makes the ships or trains or trucks nor the one who runs the machine that does the knurling on my bit of metal nor the president of the company performs his singular task because he wants me. Each one wants me less, perhaps, than does a child in the first grade. Indeed, there are some among this vast multitude who never saw a pencil nor would they know how to use one. Their motivation is other than me. Perhaps it is something like this: Each of these millions sees that he can thus exchange his tiny know-how for the goods and services he needs or wants. I may or may not be among these items.

No Master Mind


There is a fact still more astounding: the absence of a master mind, of anyone dictating or forcibly directing these countless actions which bring me into being. No trace of such a person can be found. Instead, we find the Invisible Hand at work. This is the mystery to which I earlier referred.


It has been said that "only God can make a tree." Why do we agree with this? Isn't it because we realize that we ourselves could not make one? Indeed, can we even describe a tree? We cannot, except in superficial terms. We can say, for instance, that a certain molecular configuration manifests itself as a tree. But what mind is there among men that could even record, let alone direct, the constant changes in molecules that transpire in the life span of a tree? Such a feat is utterly unthinkable!


I, Pencil, am a complex combination of miracles: a tree, zinc, copper, graphite, and so on. But to these miracles which manifest themselves in Nature an even more extraordinary miracle has been added: the configuration of creative human energies—millions of tiny know-hows configurating naturally and spontaneously in response to human necessity and desire and in the absence of any human master-minding! Since only God can make a tree, I insist that only God could make me. Man can no more direct these millions of know-hows to bring me into being than he can put molecules together to create a tree.


The above is what I meant when writing, "If you can become aware of the miraculousness which I symbolize, you can help save the freedom mankind is so unhappily losing." For, if one is aware that these know-hows will naturally, yes, automatically, arrange themselves into creative and productive patterns in response to human necessity and demand—that is, in the absence of governmental or any other coercive masterminding—then one will possess an absolutely essential ingredient for freedom: a faith in free people. Freedom is impossible without this faith.


Once government has had a monopoly of a creative activity such, for instance, as the delivery of the mails, most individuals will believe that the mails could not be efficiently delivered by men acting freely. And here is the reason: Each one acknowledges that he himself doesn't know how to do all the things incident to mail delivery. He also recognizes that no other individual could do it. These assumptions are correct. No individual possesses enough know-how to perform a nation's mail delivery any more than any individual possesses enough know-how to make a pencil. Now, in the absence of faith in free people—in the unawareness that millions of tiny know-hows would naturally and miraculously form and cooperate to satisfy this necessity—the individual cannot help but reach the erroneous conclusion that mail can be delivered only by governmental "master-minding."

Testimony Galore


If I, Pencil, were the only item that could offer testimony on what men and women can accomplish when free to try, then those with little faith would have a fair case. However, there is testimony galore; it's all about us and on every hand. Mail delivery is exceedingly simple when compared, for instance, to the making of an automobile or a calculating machine or a grain combine or a milling machine or to tens of thousands of other things. Delivery? Why, in this area where men have been left free to try, they deliver the human voice around the world in less than one second; they deliver an event visually and in motion to any person's home when it is happening; they deliver 150 passengers from Seattle to Baltimore in less than four hours; they deliver gas from Texas to one's range or furnace in New York at unbelievably low rates and without subsidy; they deliver each four pounds of oil from the Persian Gulf to our Eastern Seaboard—halfway around the world—for less money than the government charges for delivering a one-ounce letter across the street!


The lesson I have to teach is this: Leave all creative energies uninhibited. Merely organize society to act in harmony with this lesson. Let society's legal apparatus remove all obstacles the best it can. Permit these creative know-hows freely to flow. Have faith that free men and women will respond to the Invisible Hand. This faith will be confirmed. I, Pencil, seemingly simple though I am, offer the miracle of my creation as testimony that this is a practical faith, as practical as the sun, the rain, a cedar tree, the good earth.

Read, Leonard E.

Sunday, November 22, 2009

Anonymous letter to normal people


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

Friday, November 13, 2009

Sunday, July 26, 2009

Monday, July 13, 2009

Better days

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.

Saturday, May 16, 2009

"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.

Say Cheese!