deadmantalking117

[deadmantalking117]

THE WALKING WOUNDED

Welcome to my clan. I call us the walking wounded.

I've had this talk bunches of times over the past 35 or so years. Mostly with Crohns patients but also with people who have myriad other illnesses. Most have the same questions, and many of those I've already written about. But usually the first question is some version of the same.

What's going to happen to me?

My answer is always the same.

You're gonna die.

Everyone dies. So I'm always right... eventually. But what happens between then and now. No friggin clue.

But because you are one of my walking wounded, I want to help you in anyway I can.

You already know that you've been dealt a shitty hand. Pain and discomfort, humiliations galore are our daily reality. I've said hundreds of times.. when "regular " folks get food poisoning or that horrible stomach bug that's going around... that's just a regular Tuesday for us. You're not only in very real discomfort and sometimes astonishing pain... but you're just so SICK on top of that.

Boo friggin hoo... nobody gives a damn... nobody really can relate! Even people who love you... not a clue. How can they? Even when they've had that horrible stomach bug and were in the Emergency room. I think it's like child birth.. after the pain is over.. you don't remember it.

But we don't get that option. Day in, and day out... you are so SICK. all the time, every day. We have some days that are less bad than others. My wife's favorite picture of me is framed on her dresser. We were on a road trip to Vegas, and we stopped at the Hoover Dam. She took a picture of me staring off at something with my head resting on my hand. I remember how sick I was at that exact moment... 15 years ago. The whole drive was uncomfortable.. but the trip was still fun. So...it's always going to be a mixed bag. The trick I suppose is to save space for the good memories by refusing to spend time thinking about the bad. When I look at the picture.. I remember the whole trip.. and it was a blast. A lot of my life has been a blast. I've seen to it. I'm not saying you have to take up sky diving or sex dungeons, ( or take them up if want !) But find those things you're interested in. Spend the times you're feeling ok, doing things you want. Spend the times that you are stuck in bed or in the hospital, reading or watching YouTube videos of things you are interested in. Call it continuing self education. I've been blessed with a broken body and hyperactive brain. So I feed the brain. You impress me as an intelligent woman. Take your down times and put them to good use. I've read hundreds of books and thousands of articles, watched hours upon hours of YouTube video's on philosophy, astronomy, history, politics (just recently) ... anything that peeked my interest. There will be days when you're way too sick to do anything except puke. But a lot of our days are laying in one bed or another, bored and feeling like hell. Use those days to feed your brain. Use your Up days to stay in shape physically.

Your body's immune system, the system that is supposed to protect you from disease, has betrayed you... in fact, it's gone so far as to join the other side ! And now it's attacking your guts.

So what do you have?

Your mind

You have to be mentally tough when you are physically unable to move. The little bit that I know about you so far... you impress me as smart and capable. You have the mental strength to adapt to the constant pain and changes that you will encounter.

You are young and beautiful, smart and strong. You have no idea what your life will be like. I've been surprised so many times by the sudden turns that my own life has taken, I can't even track them all. But do not make the same mistake I made. I was told I would die by 40. So I never planned for a future, I just kept adapting to each new circumstance as it popped up. And while that's a fairly admirable ability... I would've been better served with more long range planning.

Plan for a long and amazing life. Whatever that plan might be. Find someone to stand by you. He or she needs to understand what that means, but I am pretty confident there's someone who is looking for an intelligent, beautiful and tough young woman like you.

Until then, you get an old diseased maniac.

If you need anything. Help with Doctor appointments. Emergency room visits at 3 a.m. , pick up prescriptions . Rides when you're sick (I keep puke bags in my cars!). I don't know your situation, but I'm starting to gather that your parents aren't around much. So if you're interested in an old hippie uncle type that sincerely wants to help, I'm here for ya!

This isn't something that you can do alone. I've been so blessed with a wife and family that have looked out for me. When I was first diagnosed, I had a million questions and no one to ask. I can't bear the thought of anyone else going through that. So you're stuck with me. Please don't hesitate to call me anytime. My experience is, attacks usually come in the wee hours of the night...and getting to the Emergency room is a problem. Or you have a prescription called in.. but you're too sick to go get it. You're really sick.. but something is different.. who ya gonna call ? There's no question too embarrassing because after 35 years of people sticking things up my ass... I no longer have that part of the brain that causes embarrassment. I've been through most of the stuff that our people go through and survived it all. Ask me anything.

I want to hear your story. And I want to know what I can do to help. But this is important... if you're not comfortable talking to me, or asking me for help.. I absolutely will not take it personally! I think it's probably weird, an old guy looking out for a young woman, but these are weird circumstances. So, if you aren't comfortable with me... please let me find you someone else. I got a couple of younger people you can talk with... well, younger than me! Also... I really think you'll like Stephanie... be sure to make an appointment soon... there's probably a wait.

There are a great many things I want to know about you and things to tell you that I hope may help.. some are written in here. Some are just writing exercises for me, (another interest that I got to explore) I'll leave a list of the relevant essays for you to check out, if you want. But you're welcome to read whatever you want.

Please let me know how I can help.

[deadmantalking117]

It's Just Emotion

This is a very tough thing for me to write about. I have no issue telling you every bizarre detail of my terrifying life. But I have a real problem talking about emotions.

Not really qualified. I'm not really an emotional type person. I was painfully shy as a kid. As an adult... well let's just say... I keep a loaded gun on my nightstand so that if someone breaks in to my house in the middle of the night, I don't gotta meet new people.

Jean Paul Sartre said it.. "Hell, is other people "

I'm very easy going around people now, I learned how to fake it! I believe most people that know me, like me. I'm always friendly, funny, flirty and I try to be charming of course. But that was the outer mask I chose. Just kinda copied my dad.. borrowed some traits from cool guys in movies, and on TV. Easy peasy.. a brand new personality! Fake it till you make it. The trick is.. keep it fresh! Don't be boring, don't be afraid of being weird, be afraid of not being interesting.

So outside appearances, check.

Internally it's a madhouse in here! I wish I could describe how much people vex me. They confound and confuse me. I literally have no idea why people think and act the way that they do. My entire life, I've found it extraordinarily difficult to connect with anyone. So those I do connect with, I tend to wanna keep around. Plus, with my health issues, it keeps me always on the outside. I don't get to plan activities or join groups, I can't do things like volunteer work, or clubs. I'm unreliable.

Change is impossible for me. I don't do well. It takes me while to adapt to new circumstances, so once I get settled in.. I don't like changing it up again. The thing is... I don't get stressed out by change... I just don't like it. I don't get stressed out by hardly anything... and maybe that's a problem.

I'm not saying I don't feel, "feelings" . I get mad and sad, sometimes I get pissed ! But I've always had a kind of detachment from my emotions. And I never do anything based on my emotions. I've always just kinda held them in the background, an interesting quirk or something. But nothing to do with me. The Mr. Spock jokes would be easier, except for the fact that I'm usually a very happy, easy going person. I'm Spock's brother Sybok !

What I see though.. is it looks to me like the vast majority of folks I've encountered are completely driven by emotions. Fear anger lust greed happiness curiosity... people make actual decisions based on how they feel about things. Scratch that.. not decisions.. they just have reactions. That amazes me.

I don't react to anything.. it's not my nature.

I have to think before I can do anything. Fortunately, I'm very good at making quick decisions. I process information very well. Not for one second am I saying I always make the right decision! But I don't hesitate. And I've wondered from time to time if maybe, just sometimes I should take those emotions that are running in the background, and give them just a little more weight, or any weight at all.

For a long while now, I've been what most people would call... depressed. "I'm sad and I'm tired and I don't know why " it's a lyric from an old Paul Simon song that keeps running through my head. But when I see people who actually suffer from depression, I think.. that's not me. In my situation, being depressed doesn't seem like an unreasonable thing to be! I'm not going to be taking happy pills. No reason to. I don't suffer from depression. I suffer from a bunch of other shit! And it makes me sad!

Master Chun said... " Fear is just something you feel. You feel hot, you feel hungry, you feel angry, you feel afraid. Fear can never harm you." ( if you don't know who Master Chun is.. look him up.. he's brilliant ).

Fear, anger, happiness.. these are just things you feel. But I think Chun might be wrong. It seems to me that feelings have caused lots of people great harm. I mean.. I get where he's going with that.. feelings can't harm you if you don't let them.. if you can control them. But most cannot.

Maybe I am lucky... maybe not having these over powering emotions has been a gift... it gets so overwhelming when the bottom drops out of my life.. (Crohn's attacks and such)... I couldn't imagine what it would be like to have to deal with the emotions that go along with it. Of course, maybe my fear and anger being stifled are why I'm depressed! They say.. anger turned inward is depression.

But I've seen what happens when people let that shit out.. so I'll keep it in.

Cuz.. what the hell.. they're just emotions.

[deadmantalking117]

DEAR KAIRI

"Welcome to your life, there's no turning back" it's from an old song. Those are the very first words I sang to you. I remember it was the day you came home from the hospital and I finally got to meet you. I picked you up, and sang that verse to you.

When you were a baby, I sang bunches of songs to you. And there was a day, you were unusally cranky. I took you outside in the swinging chair under the tree. We just swung back and forth, and I sang the song "Rainbow Connection " to you. And instead of crying, you just looked really pissed ! Your eyes were shooting daggers. But you didn't make a sound. After staring me right in the eyes for several songs, you finally drifted off. And smiled.

I figured, since you seemed to like my singing, we would probably get along just fine. Later, when I knew you got My sense of humor (through your father).. It was a lock. You quickly became one of my favorite people in the whole world.

So what do I want to say to you ?

You're starting out in life with a lot of pluses. You have an amazing extended family. You have more people who absolutely adore you, than most people get in an entire lifetime. You have a wonderful mom, a great step father, and brothers, and sister who look up to you. Your father thinks you're the only person on earth that matters ! Aunts, uncles, cousins, and the most awesome grandparents any kid ever had !

You have a mother, aunts, and grandmothers who will show you everything you need to know about being a woman. Learn from them, they are all good examples to follow. And you have a father, step father, uncles, and grandfathers, who are all pretty good men. They can show you what to look for in a man. (If thats what you want !) And all of them would kill or die to protect you.

You're intelligent, beautiful, and utterly charming. You really got the total package, your mothers beauty, your fathers brains. I remember when you were 2 years old. You would have the most grown up conversations! A born talker. Pick any subject, you had an opinion. If not, you weren't afraid to wing it.

So what do I want for you ?

It's for you to remember one thing as you continue on the incredible journey that will be your life.

You've got a lot. So pay something back to the universe. Something you already have in abundance. That something that you can give back to the universe?

KINDNESS

It sounds simple. Stupid maybe. But kindness is a rare commodity these days. People are just mean sometimes. Stand up for those who have less than you. People who have special needs aren't less because they need help. Don't ever make anyone feel bad because of the way God made them. Don't let anyone who claims to be your friend, bully others. Stand up to anyone who bullies another human being. You have 2 very strong families at your back, and neither family ever takes any shit from bullies ! Be kind to other kids who might be very different from you. The best people I've met in my life, have been the most different. Regular people suck. Be kind to everyone you come across. It pays off in ways you will never imagine, and it costs you nothing. Besides, it is simply the right way to be. Others spend their lives being mean, unpleasant, unkind. You are part of my blood. We fight against the darkness. We show others the light.

Let your charm, intelligence and sweet personality be the light for others to follow. Let your sense of humor and strength be your shield against those who just suck.

I'm looking forward to seeing the amazing woman you'll become.

I love you !

Grandpa

[deadmantalking117]

I NEED A HERO...

I'm desperately looking for a Doctor. Recently I was dumped by my doctor of 5 years. She just decided she no longer wants to treat me. No reason was given.. she just doesn't want to treat me. I don't owe her money.. I wasn't asking her to anything illegal, immoral, or unethical. The only issue is, I've been on morphine for most of the past 15 years, and because of the current opiod panic... she's "not comfortable prescribing it anymore". I've asked her many times if there was ANY other viable treatment options available... there is none.. but, since she doesn't feel comfortable prescribing morphine anymore, and she has no other options to offer me.. she'll just drop me all together.

A little history...

I was diagnosed with Crohns disease at 25 years old. After emergency surgery, the surgeon had a family meeting in my hospital room, with my wife, my mother, and my sister. He told us about the Crohns diagnosis, and said that I would likely be dead by 40. Over the years I've been on virtually every treatment know at one time or another. But after my 3rd emergency bowel resection. I was having serious issues. I was having several painful bowel movements per day. The pain and spasms were monsterous. I was unable to work my part time job, because I was always in the bathroom, or in bed. My gastroenterologist at the time, moved heaven and earth to get me access to a new treatment called Remicade. He got the manufacturer to cover the $14,000 per dose price tag. But after a few treatments, I was almost completely crippled by the Remicade. I subsequently found out that there were many patients having severe reactions to it. For me it culminated in my daughter having to rush me to the ER after I fell in my bathroom and wasn't able to get up. A few months after quitting the Remicade..I was mobile again. But the intestines were worse than ever. I was almost completely bedridden. Finally he suggested that we try morphine. It was kind of retro.. a hundred years ago, it was pretty much the only treatment for my issue. But, he told me that it had the benefits of calming the violent spasms, and since it causes constipation in normal people, it would balance out against the chronic diarrhea. There was, of course, a whole sheet full of rules to follow. But the results were nothing short of miraculous. Almost immediately I was free of the bathroom. On the morphine, I'm mostly pain and spasm free. I have one or two bowel movements per day, instead of 12.

Right now, I am able to work part time, at a job which gives me some good aerobic exercise a few days a week. I get to socialize a little, interact with people, get out of my house, and also, make a little much needed money. I get to have family game nights with my grandchildren, go out with my wife occasionally. Once I'm off the morphine, it all ends.

About 3 years ago, I quit taking morphine all together. I quit cold turkey after more than 10 years. I was tired of being treated like a street junkie by many doctors who assumed that I was just drug seeking. Even though I haven't gotten high from the morphine in many years, one doctor wanted to put me on Methadone because, he said " you'll get high from it, but it's not addictive like morphine!" This shocking ignorance from an actual Doctor, put me over the edge. I didn't care if I lived or not. I was secretly hoping that the withdrawals would kill me. After a few days of withdrawls, the real nightmare started. I had mostly forgotten how bad it was before... it was so much worse. I was completely bedridden now, forced to wear adult diapers, I dropped 20 lbs in that first month, I was wasting away. Force feeding myself Ensure to try and stay alive. In desperation, I made an appointment with my newest gastroenterologist (the doctor who originally put me on morphine had retired). She reluctantly agreed to put me on a strict 90 mg. Per day dose, with all the rules and caveats. And again, almost instantly I was back to normal.

In all the years I've been on morphine, I've never broken any of the rules. I went on line and found the A.M.A. guidelines for prescribing any opiods. I keep them written down, so that I wouldn't break them.. my life depends on it. I used to use 2 pharmacies for convenience.. but saw that it was a red flag, so for the past decade I've used the same, one pharmacy. Whenever I go to the ER, or am admitted to the hospital, I always refuse the additional pain meds they offer to send me home with.. just because it looks like drug seeking behavior. I never drink alcohol. No recreational drugs. I only ever have one doctor write my prescriptions, so there's no possible chance of any impropriety. I even have my own rules.. I can not take my first pill of the day, until after my first bowel movement. Don't want to get constipated... it can trigger a flare up. I'm very disciplined.

Your challenge...

I need an actual, old fashioned "Marcus Welby" type of doctor ! Someone who actually cares about my well being. You don't like the idea of long term morphine use? Great ! Give me ANY alternative. I'm open to anything. Over the years I've taken literally poison to try to fight this nightmare. The Remicade horror was only one example of the many non effective treatments I've endured. Hit me with your best shot. Don't just abandon me because you're "not comfortable ". My current doctors last idea on the day she dumped me.. try Elevil. Apparently her idea was, if I was to be completely bedridden... I don't have to depressed about it! Seriously, her ONLY treatment option now for short bowel syndrome is to take me off of the safe and effective treatment, and put me on brain altering chemicals, so I wont be sad about it.

I run an online support group for other Crohns and IBD patients. More and more I hear stories very similar to this one. Doctors who just get rid of their sickest patients, because they can't fix them. The idea that they have to treat people who will never get better, must be hard to deal with, but it's a fact of being a Doctor. I'm not asking you to cure me.. there is no cure, and after 3 bowel resections, I'm way past most treatments now. If you're the type of doctor who can't deal with sick people (and they are legion) then I dont need you.. nobody needs you.

I'm not demanding. Most people find me to be charming, intelligent, and easy going. I usually only need to be seen in the office once or twice a year for check ins. I take 3 different blood pressure meds, so I mostly need someone to quarterback for me.. someone to write prescriptions, keep track of hospital visits, look after my final years. I'm 58 now, way past my expiration date. But I'm fighting for every last day I can get. I need that good, old fashioned doctor who will fight for me.

The law...

Recently our own Arizona State legislature, has been working on "some of the toughest opiod laws on the books". The newest rules dictate that patients can not receive more than 90mg. Per day (or equivalent) of morphine (or any opiod), unless they get a referral and consent from a certified pain management specialist. I've been on 90mg. for the past 3 years, (more in the previous decade) without incident. And even though its not really enough, most days. I make it work. I've had to learn the hard lesson, that I simply don't GET to feel good a lot of the time. But with a little discipline, and the help of just one caring doctor, I can have a few good days.

"Do you care about me at all?" I asked my doctor on that fateful day. She didn't say a word. Just stared at her computer screen. I asked again. " I understand about doctors having to have this professional detachment, but you know what will happen to me if you abandon me, don't you care at all about that?" But again, no answer whatsoever. By now it's obvious, she just wanted me to leave.

So it comes down to this. Either I somehow find a real doctor who actually cares about my well being.. or die... slowly, painfully.

I NEED A HERO...

My last thought..

"I WILL REMEMBER THAT I DO NOT TREAT A FEVER CHART, A CANCEROUS GROWTH, BUT A SICK HUMAN BEING, WHOSE ILLNESS WILL EFFECT THE PERSON'S FAMILY AND ECONOMIC STABILITY. MY RESPONSIBILITY INCLUDES THESE RELATED PROBLEMS, IF I AM TO CARE ADEQUATELY FOR THE SICK ".

From the modern day Hippocratic oath

Update ! For the past nine months, I've seen an amazing nurse practitioner who thinks I'm awesome and wants me to live ! I'm still on the 90mgs of morphine, but she made one little tweak.. I get 2 extended release tabs and one quick release.. instead of 3 quick release pills, which the gastroenterologist gave me. Big difference! My guts stay calm longer. And the ONLY difference is, compassion. This person listens to me, she actually makes me feel like she gives a shit.

It's so simple. My last doctor, I thought was competent, mostly. But it never occurred to me that she actually gave a damn what happened to me... as long as she kept me alive. When she tired of doing that and dumped me.. I literally marked my calendar. I counted down the days I had left.

But I struck gold for now. I printed a few copies of the above letter looking for a new doctor, and fully expected to be turned away. But there are still a few physicians who actually care.. they're called Nurse Practitioners.

I'm working on my epic poem to her now.

Just hope I live long enough to write it ! But at least now, I have a chance.

[deadmantalking117]

ONE OF "THOSE" PEOPLE

I’m on Social Security Disability. S.S.I. Medicare. Have been a long time.

I’m putting that right out front because what I’ve learned in the past 35 years is this… Most of Americans haven’t got the first clue what that means or what’s involved. The staggering amount of misinformation going around out there is truly impressive.

So today my diseased maniacs we’re going to cover some of that misinformation. Maybe clear up a couple things. This is going to a longer one.

Everyone stay frosty!

PEOPLE ON DISABILITY ARE SCAMMERS WHO ONLY WANT A FREE RIDE FROM US REAL TAXPAYERS! I’ve refered to the disability system as ThunderDome. There is nothing easy about it. It’s an ordeal like no other. No job I’ve ever heard of can match the unbridled carnage of working through the disability system! To begin with… you don’t just decide.. “I don’t feel like working anymore!” Only a doctor can decide that.. several of them actually. Plus a bunch of government types. People hear about disability scammers and think that some lazy dude is sitting around.. drinking beer.. collecting his checks. The real scammers are anything but lazy.. they are usually doctors actually.. and they work their asses off! The people they use are usually ignorant dupes. Getting on disability is so daunting it discourages lazy people from getting it. Even when they really need it. I’ve known several people who were genuinely sick or injured. But they just gave up because it was too overwhelming.

There was a really popular article going around facebook about these people who got disability so they could get free money from some other agency which got them more money from this place..which got them even more money from that place. It was like 10 different money grabs and they were living in a mansion raking in over a quarter million a year. Plus food stamps. These things dont exsist. While some of the programs might exsist. Having one cancels the possibility of getting some others.. there are different agencies that have their own programs.. but unless they were using multiple IDs.. I highly doubt it. And after i show you next, the ordeal to just get started.. you should doubt it too. But if they were able to pull this off.. they worked their butts off for it! I’m not saying it right.. but it’s impressive.

Years ago I worked for an electronics store. We had VCRs hooked together to copy tapes. A guy came in a couple times to make a copy of surveillance tapes he’d made. He was an investigator for the government.. he followed people who’d been “injured” and tape them. I personally watched 12 different cases of fraud. My favorite was the really hot girl he videoed hobbling out of the court house on crutches. With a neck brace. Cut to the very next day.. in a bikini.. doing actual cartwheels on the beach. He had a dozen more. My point is. Of course there are always going to be lazy people who want to take advantage. But its really not that simple. And not as many people get away with it as you might think.

YOU’RE THINKING.. HEY, DISABILITY STILL SOUNDS LIKE THE BEST DEAL EVER! WHERE DO I SIGN UP?

You get sick or injured

You have to be permanently sick or injured.. Meaning you’re never going to get better. If there’s any chance you’ll get better.. You’re out Next you’re doctor has to decide that you’re not ever going to recover..that usually takes a few years.. hundreds of tests.. thousands of dollars. If he doesn’t think you’re disabled.. You’re out

Now the fun part.

You apply for disability . Send off for your forms and applications. With your doctor’s blessing you gather up all your medical records from all of your doctors. And oh yeah.. if you only need 1 or 2 doctors.. You’re probably out. When I started applying.. I had 3 file boxes with records.. just the past 2 or 3 years. I imagine that’s a bit different today.. computer records weren’t around then. But if you do apply.. You’ll still need lots of your medical information at your fingertips. You get your first official government envelopes. Actually big stuffed things with information pamphlets and more forms than you’ve ever seen. Massive amounts of new information that you have to learn. More about forms later… Be sure to read and fill out EVERY line.. every space. Write neatly. Spell check. If theres any confusion on any questions… Or any missing info. They can’t read or understand what you’re writting..You’re out.

Start over again.

Somehow you’ve done it.. all your forms are filled out neatly and correctly.. you’ve provided tons of proof about your illness.. you’ve provided them with every single scrap of financial information about you since you were born. You have your doctors blessing.. all 3 of them in fact! They now know everything there is to know about you.. seriously.. EVERYTHING . Those forms are extremely comprehensive. No one disputes your claim.. everyone agrees.. you are disabled. You get your reply after maybe 90 days DISABILITY DECLINED

Because of course!

Everyone gets turned down the first time.. or two. It’s kinda built into the system.. by turning down everyone at first.. it weeds out the scammers! Remember that lazy beer drinking scammer.. he’s done with this shit. He just spent the past couple months working his butt off for NOTHING!

But not you.. You’re not faking it.. you are seriously sick. You can barely get out of bed some days. And you have a family to take care of. So.. You file an appeal.. and you have 90 days to start that.. so get to it! You send in your appeal application and sometime in the next 90 days or so. More giant envelopes arrive with more forms. And more information to absorb. But whats funny? A lot of these forms have the exact same information as the forms you’ve already filled out! They already have all this information.. remember that after the first round.. they know everything there is to know about you.. but ok fine.. we’ll tell the tale again. And you submit your appeal.. this time it’s a bit easier.. but still time consuming.. and don’t forget how sick you still are. This is it! You get your official government envelope. APPEAL DENIED

You look at your 3 boxes of files. Your two file folders for your copies of the applications and the appeal.. plus the separate file for all your current financial info. All your financial info has to be current. Every utility bill.. bank statements.. credit cards.. receipts.. you have to prove where every dime goes and it must be up to the minute. You just wanna go have a beer with lazy scammer guy now. But cant do that! You got a family to take care of.. and you’ve barely been able to work at all the past couple years. Besides.. now you’re kinda pissed. No one disputes that you should be on disability.. except apparently uncle Sam.

Time to get a T.V. lawyer!

Disability lawyers serve a useful function to the system. Their job is to review all of your information and get it up to government specs. When you hire a disability lawyer they don’t charge you to take your case. They’ll only take you if they’re sure you’re actually disabled. That’s because they only get paid if you win your new appeal. The good part about applying for disability is that everything starts from the date of your first application. Meaning, once you do get approved.. you usually have a couple years of back pay coming. The lawyers get a quarter or third of that first check. You get say ten thousand dollars.. they get three of that. It’s actually a good deal for both of you. The lawyer doesn’t have to do much. You’ve already done every bit of the work for them. They review it all. Make sure you dotted your T’s and crossed your I’s. Then pretty it up and file for round 3. It’s a good deal for you.. because if a lawyer does take your case on contingency.. You’re probably going to get approved (eventually)

The hearing before a disability judge.

You meet your lawyer again at whatever government building your hearing is being held in. And she leads you into a conference room. You chat for about a half hour or so before the hearing starts so she can review your testimony. You’re going to have to to convince a judge that you’re sick.. not just with your boxes of files.. show him what that means for you.

My lawyer told me.. if you feel like you have to have a bowel movement. Or you get nauseous during the hearing.. be sure to ask the judge for a break. These hearings are stressful on people. Especially people with Crohns. So dont hesitate to ask for a break. ( ok.. I thought.. thats aweful considerate.. but I’m fine right now) The she took my hand and looked me in the eyes. Speaking very slowly and deliberately she says again…You need to be sure to ask for a break if you feel any need to go to the bathroom at all. Understand? ( aaahhh.. ok got it ! Wink,wink, nudge, nudge, say no more!) The hearing last less than an hour or so. The lawyer and the judge review some legalese. Most of what they’re talking about is gibberish to me. After a half hour.. I asked to be excused to go to the bathroom. I actually did have pee a little. But afterwards while we’re walking out she smiles at me and says.. that went well.

Finally after almost 2 years I got approved!

But thats only the start of the real work. Now I’m officially one of “those” people. A drain on society.. a sponge.. a parasite. At least now I can be sure that I have a few hundred bucks coming in each month. I still work part time.. You’re allowed to make less than a thousand dollars per month in income when you go on disability.. so the very most I can bring in between my S.S.I. and whatever I can still earn is maybe 20,000 dollars per year. This is what they mean by living in a fixed income. We’re livin large now baby! But the more important issue is.. I have some kind of insurance finally!

But theres so much more in store for you.

YOU’VE DONE IT.. YOU’RE ON DISABILITY. THE CASH IS ROLLING IN AND THE DOCTORS ARE GETTING PAID. IT’S MILLER TIME! RIGHT? Not quite.

Over and over you’ll get envelopes from good ole Baltimore Maryland. Home of the social security administration. They need this.. or they don’t have their copy of that. Random letters with some new form.

The thing about government forms is.. their meaning isnt always clear. They seem a little convoluted sometimes.

“Add the total of lines 17b to lines 17c and 17h. But only if it is in direct opposition to the tertiary algorithm from form 3768-d. You may need to reference your proprietary issuance schedule to access the proper formula to make this claim. (U.S. Government Form 6009).”

I don’t know how they could make that any clearer.. I’m just saying.. I’m not really that smart. Which one was line 17b again?

Regular updates on your income from the local offices. Gotta bring copies of all your newest bills.. and oh yeah.. that 3000 in stocks you saved from your last job? That’s gotta go!. You can generate income from stock ownership.. You’re not allowed too much income remember? And we need to double check every bank accout you have.. verify that you dont have a dime. The guy who checks under your mattresses will be out sometime on Tuesday.

Then of course the reviews. Occasionally they’ll want to have you checked out by their people to make sure you didn’t accidentally get better. Now, because my disease has been well documented for 35 years and it’s incurable. I’ve only had 2 reviews. The first one after a couple years. He just reviewed my charts. And signed off. No exam .. no tests. Barely said a word. My last one was about 3 years ago. He was awesome. We went into his office and just made fun of the system. He couldn’t believe I was there. He gets paid by the government to check the patients the computer sends to him. He said.. “I get a few people in per week that have incurable diseases.. what do they think is going to happen? I’m going to say wow! His intestines grew back.. he’s all better now!” He said he did get some questionable patients. They get completely retested for whatever they supposedly had. But the vast majority were legit. We had to spend a half hour together for the interview and records review.. we talked about movies for 25 of those minutes.

One more thing. Never change your job. It confuses everything.

“You mean.. You’re working less hours at a more convenient job. And you still aren’t making over $1000 .. right? We’ll need to see all your financial info since 1954. ”

But I wasnt even born til 59!

“Oh.. in that case.. we’ll need your 6472-g25 Waiver issuance request. For amortization of residual issuances notwithstanding any prior findings of such issuances. (U.S. Government form 77684)”

OOPS ! I DID IT AGAIN - I THINK I MIGHT HAVE SCREWED SOMETHING UP.

usually with all the forms flying back and forth. The government is actually quite reasonable about you handing in your homework. On most forms and information requests. You get like 30 days for this or 90 days to reply to that. But always more than enough time. If you do screw up something, you get a warning shot.. but honestly I wouldn’t push it.. Keep up with your paperwork.. be timely. Once there’s a problem. It takes time to iron it out. You may not be getting paid while you do.

Years ago.. we had moved to a new place in the same town. My checks have always been direct deposit. So I never thought to file with social security.. stuff got forwarded automatically anyway. But one month. My account is empty. And I call to ask why. They’ve temporarily suspended my check until they could investigate potential fraud. Right after we moved. The very next month actually. The street we used to live on got it’s name changed! We had lived at 133 main st.. but now there was no such place. I could prove that I was in fact living now at 768 elm st. But the previous 5 years? How could you have been living at 133 main when there’s no such place? So I had to go down to the local office and explain that 133 main st. Is still there… it’s just called 133 terrace ave now. I offered to drive the guy over and show him the house. But he was familiar with the situation already and was actually able to get into the system and fix it. Next month I got 2 checks.

A DEAD MAN’S REVIEW OF THE SYSTEM

The Social Security system is actually as far as I’ve seen and in my vast experience . Not all that bad. It’s kind of an unwieldy beast. And I’m sure there are many areas that could be improved upon.. but there’s a lot to say good about it.

After a couple years of grinding persistence. I got in. No one ever for a second denied that I was disabled.. like I said. It’s just how it works. Once you’re in.. there’s still work to be done.. lots of it. But you can deal with that. For doing your homework on time. You get a check on the third of every month. Without fail. I have direct deposit. I cannot recommend it highly enough. Your check goes in promptly on the 3rd. And in months where the 3rd is a weekend or holiday, you get it earlier. In the bank. No waiting for the mailman.

Medicare takes care of your doctors. So you don’t have to stress over all that. They keep all your records. I just go to my appointments. Or the ER. Or hospital. The doctors know what Medicare covers. Medicare takes care of the bills. Better than any insurance.. I don’t have to stay in network. No pre approvals. No deductibles. Usually no copays. Insurance companies are a horror to deal with. And they can say no anytime they want.. it’s their job to deny coverage. I’ve never been denied treatment, ever. When I had heart issues out of the blue last year. I got wheeled through a battery of tests. Never saw a bill. I get statements from Baltimore that say on the envelopes NOT A BILL. I’m sure there are many things that require some discussion. But all the regular stuff is covered. Prescriptions are usually a dollar or two.

Government employees.. contrary to popular belief.. are usually efficient and helpful. The vast majority of people that work for the administration are quite good at their jobs. There are people who suck at their jobs.. in every job. Even doctors! ( Dr Pencil Mustache) but the main issue with employees at social security offices is. There are so many claimants and so many rules.. and so much paperwork. Bring a book! Usually they’re quick getting you in and out. Say.. better than the DMV. Not as quick as the post office.

But then the post office doesnt have to deal with “form HG563-d/5 special dispensation for administrative assessment facilitates as they pertain to cost distribution for the amortizing schedules for the year 2018. (Reorder form 7887)” so they got it pretty easy over there.

Being one of “THOSE” people used to bother me a lot. Being a welfare parasite, feeding off the teats of good hardworking folks… It’s embarrassing for people to know. And the reaction from some people is scary. Most people understand that - I didn’t do anything wrong. They’re glad we live in a country where we try to look out for each other. And everyone agrees that things could certainly be improved upon. But some people are cruel. It would be better if I just threw myself onto a funeral pyre and saved the taxpayers some money. But the thing is.. I’m a taxpayer too.. for over 40 years.. and I really enjoy irritating assholes. So….

Dead Man Talking!

[deadmantalking117]

NURSES

Doctors get all the glory. They get the big bucks. But anyone who’s spent time in hospitals.. know that nurses are the real hero’s. Trying to describe a nurses job would probably take far too long. Simply put… when you go to say.. the ER. Nurses get you processed.. get your information.. get you cleaned up if needed.. they get an IV started… and whatever else needs to be done to prepare you for your audience with the pope.. I mean doctor.

Eventually the doctor comes in. Reviews everything the nurses have done. Scribbles some notes. Then woosh! He rides off on his white steed.. back to Valhalla.

The nurses move into action.. from here on out.. everything’s nurses. Whatever needs to be done.. it’s done by nurses. Any drugs you get.. any thing that gets done.. gets done by nurses. Every second you are in the hospital.. it’s nurses who are doing the actual caregiving. Most times after getting me prepped.. because I’m a frequent flyer. They get right to action.. no doctor’s really needed, except to sign off the paperwork.

On my last ER trip.. they were incredibly busy. The waiting room was full. But my circumstances are a little different. I can’t sit there patiently waiting for my turn. I’m vomiting non stop into a bag the whole time.. and it’s usually kinda loud. When I can lift my head up.. I only see embarrassed faces trying not to stare.. but I tend to draw a lot of attention. This angel comes sailing out from the back.. hands full of supplies. “I’m so sorry.. we have no where to put you.. well get you in as fast as possible.. but I’m going to get your IV started right here. Get some meds into you so you’ll stop puking”

Right there in the waiting room. She got me ready.. and actually helped me survive till I could get a desperately needed bed.

Thats nurses. They are the real person in charge. She didnt need to be told to help me. She was swamped in the back.. and since she couldn’t help me back there. She took a few minutes.. gathered up the supplies.. and came to me. Thats what they do.. they help.

Honestly.. I could make this post 10 pages long with many, many, many other times that nurses have gone above and beyond for me. Everyone who ever spent any time in a hospital has just as many tales to tell of a nurse who helped them.

If I had the talent.. I’d write an ode to nurses and chisel it in marble. But it’s actually quite simple. Nurses are male and female.. some young.. some older… some really old! They are every ethnicity you ever heard of. But as a group.. they are the very finest people that humanity has to offer! They are literally God’s angels here on earth.

You believe that Angels actually walk among us..

I can prove it.

Nurses are the reason why I’m a dead man who can still talk.

[deadmantalking117]

MY WORST MISTAKE

you’ve heard this story before… some.

When i was in my mid twenties.. an expert on the subject..Dr. Handsome dude. told me that I was going die.. probably in the next 15 years or less. I would spend those 15 years getting weaker and sicker. I would spend those 15 years in almost complete and total never ending pain. My wife would spend those 15 years ( if she stayed around, cuz many don’t) changing the sheets for her husband / pet rock. Sex was out the window probably.. he’ll be too weak and sick to do his husbandly duties. Plus you’re really going to not like him a lot of the time! You might wanna look into dating again! Just saying.

So there it is. I got 15 probably crappy years left. But I’m like 28… 40 is a looong time away! Besides.. just because this guy is an expert… doesnt mean he knows me ! I’ve done my research… Crohns disease has a very wide spectrum of symptoms. At a Crohns disease lecture.. I met a 16 year old girl who was hooked in and out to feeding tubes… she’d already lost all her intestines. At 16. But there was also the 75 year old man.. was diagnosed at 50.. but had small issues for 20 years before. He was looking at possibly his first bowel resection. After 50 years with it. I’m saying.. this disease is like no other. But anyhow… even though I’ve had a significant bowel resection.. a fistula and that repair.. plus a couple odd extra “procedures” . I’m going to be like the old guy… it wont really effect MY life like that! Doctors… what do they know ? Am I right!? Am I right? Anybody?

Turns out. He’s pretty accurate!

Actually for the next 8 or 10 years.. I was mostly ok. Our sex life was always awesome.. maybe not as frequent as either of us wanted.. but always good. And she didn’t even dump me… hooray for love. But after 35 or 36.. I got the full Crohns experience. I remembered the words of doctor Handsome dude… you’re going to get very sick and die before 40. I was late 30s now.

“Dying time is here” – Mad Max- beyond thunderdome.

I was about to enter the Thunder Dome of the United States healthcare system .

One man enters.. no man leaves !

Until now I have been more of a frequent visitor. I worked full time since I was 16. I always had insurance.. because back then.. every semi decent job offered insurance. But things change. After my first surgery.. because now I have a very serious “pre exsisting condition ” . Insurance was a little trickier. When I started getting really sick. Insurance wasnt possible anymore. But I had a great Dr. He came up with the plan that I should retire on disability. It was time. I’m probably dying next week anyways.. and when you’re on disability.. you’re covered by Medicare.. so insurance isn’t the problem.

That honestly took some convincing for me. I put off filing for quite a while. I couldn’t deal with the stigma of being one of “those” people. I’ll do a different post on that whole nightmare.. but it’s a long story. Suffice it to say that by now I’m 37ish.. maybe 38.. I’m on disability now after a 2 year struggle. But all my ducks are as in the row as possible.

And I’m sick all the time now. For 4 years or so now… I’m constantly in and out of the hospital. An endless carosel of hospital.. to home.. to my now very part time job… to the hospital.. to home.. round and round. You can actually work a little while you’re on disability. But I was driven to force myself to get right back to work.. I was already mooching off society enough! Plus I was by now fully terrified of really dying!

This is actually happening to me. Just like Dr Handsome dude told me all those years ago! Weaker.. sicker.. deader.. but there’s a small problem. Not really dying here.. Why is this taking so long? Weaker ? Check Sicker ? Double check Dead ? It’s been 5 years of this shit.. tick tock God!

My first mistake…

I believed all the Drs.

As smart.. well informed and brilliant as my Drs were and are. They were then and are today. Amazing people. But the human body is a funky thing. It’s going to do, what it’s going to do. All that even the greatest doctor in the world can give you is probabilities.. what’s probably going to happen to you.. that’s it.

Cuz here’s what happened next….

I’m about 40.. for the past few years.. I’m in and out of hospitals on an almost monthly basis. I know every nurse there by name.. they know me! I’ve had so many flares and attacks and really odd shit happen to me. I had to have 5 litres of blood transfused into me.. because now I have 2 different bleeding ulcers.. one duodenal.. one peptic.. both bleeding buckets. Tons of drugs to MAYBE avoid surgeries. A blur of pain and seriously bloody stools. Eventually we get the combination of meds for all these issues sorted out.. but still.. over and over we go. No life.. just hospital. Or home in bed. I know I’m supposed to be dying here.. but this isn’t really working for me.

So I asked my doctors to cut out the bad part.. there’s definitely a bad part. For me its the same bad part. That pesky Terminal Illeum. With a lot of Crohns people.. the disease comes back to the same place that you’ve previously had removed. Thats where my blockages were ( still are ). After years of different drug treatments.. most only minimally effective.. I needed to do something completely different.

So bowel resection number 2. I recovered after a few weeks. And actually was almost myself again.. but more changes were needed. I was taking fistfulls of pills everyday. My wonderful doctor was doing everything humanly possible to help me. But again.. thats a whole other story to tell.

So with my health slightly restored.. Kat and I packed up our lives and our family.. and moved far away from our crappy life. For the next 3 years I never saw a Dr.. didn’t take so much as an aspirin. I needed to know how I really felt. The problem with drugs is that they might work on one problem.. but cause 2 brand new problems. Lots more on that later.

So… my post death life has officially begun..

I’m mid 40’s.. I’m weaker.. sick on and off. But I’m alive.. and still moving. So lots more to come.. stay tuned!

I told you that my one mistake was taking all my doctors literally.. I believed I would die. I kinda built my life around being dead at 40. Then at 40.. I had to make a whole new life for us. My point? Always plan for the future no matter what an expert tells you. Its always coming for you.

What was my worst mistake?

I got a deadly disease in the greatest country in the world.

I’ve had to adapt over and over to constantly changing circumstances. I should only ever have had to worry about my health.. it’s the way it works in every other country. Here.. everything’s a daunting process .. and I promise I’ll tell it all… but you have to go through it all while you’re at deaths door. Its a cruel system. If you’re lucky.. you meet some government employee who actually knows something. Help is almost non exsistant. All that hospital drama I just told you about? That was just so I could tell you this. Kat and I spent years during this time. Begging for help. You can’t imagine the volumes of paperwork.. I had 3 big file boxes full of my files that I seemed to have to take to every government agency in the world. Its soul crushing at a time when you’re barely holding on to yours. I promise I’ll tell you that whole story.. but its late and I’m tired.. and even remembering this is seriously depressing me.

But hey.. I’m a dead man who’s still talking.

Be well my friends

[deadmantalking117]

HOW TO BE A PATIENT

This is something I’ve written a lot about on various support sites.

When you first get sick or injured .. It’s likely you’ve had almost zero experience with our healthcare system. I’ve been in and out if hospitals my ENTIRE life.. litterally.. since the day I was born.

As a baby.. I had rhuematic fever. Almost died. As a toddler I was hospitalized for asthma attacks twice.. I would just stop breathing. Every childhood disease.. measles… German measles.. chicken pox.. mumps… Migraines starting at 4 years old.. on an on. As a finally healthy teen.. I went to the ER twice for concussions while playing football.. and the odd fishhook to the face.. and a whole week at 13 years old to run dozens of tests for the migraines. I spent Halloween 1973.. in a hospital ward with 2 other boys.. we all got in trouble for spending the night covering the tile ceiling in spit balls! Apparently God has been priming me for this mission my whole life !

I sometimes think that “how to be a patient” should be taught in high school.. as part of health classes. There’s a lot to know. Believe me when I tell you.. you don’t!

So here’s my best tips for newbies.

1- BE A GOOD PATIENT I know you’re afraid. That’s completely normal. You’ve either just gotten very sick or injured. You’re likely in pain. This sucks. But try to stay calm. Listen to what the doctors and nurses are saying to you. Ask questions. You know you have many. But don’t be rude.. or treat the nurses like shit. Don’t bark out commands… these people are not your servants. I’ve heard other people say terrible shit to nurses. These people are in charge of making you healthy.. Do you really think it’s in your best interests to piss them off ? I always try to keep my sense of humor.. and I always apologize to the folks as soon as the drugs kick in. Frankly .. I whine like a little bitch when I first go in the ER. So as soon as I’m under control. The vomiting has stopped. I can catch my breath again. I say thank you and tell them how much I appreciate their care and patience. Be nice to the nurse. Make that your mantra at the hospital. It pays off 10 fold for you. Nurses take care of several people each day. Who do you think they take better care of? Cranky old man? Or charming gentleman who is suffering so badly? Nurses love me. Be nice to the nurse. It’s rule #one. The add on to that is.. be nice to office staff. They can make your life much easier.. for the same reasons. They gets lots of people calling for appointments and information all day. And who do you think gets prioritized? The funny old guy who knows their names ! Over the cranky old ass who’s always complaining! Be nice.. I know you’re sick..

2- BE AN INFORMED PATIENT from the very first time you get thrust into healthcare.. for whatever reason.. PAY ATTENTION ! Try to understand what’s going on.. what’s happening to you. You may not have much to say at first.. if you’re sent to emergency surgery like I was.. you dont get time to make decisions.. you really just do what they tell you. But after you start to recover.. use that time to inform yourself. Learn as much as you can about what is happening to you. Usually it’s not that hard to understand. But I’ve had people tell me about immediately life threatening situations with this kinda confused look on their faces. “The doctor said something about a massive cormilary.. or corbery.. something about my heart.. and I gotta go to this other guy.. so he can test something.. and I might need pills or an operation or some such” MY God! Its called a coronary.. you had a freaking heart attack! And that doesnt have your undivided attention?!! I know learning stuff is hard.. and being sick is not fun. But it’s funner than being dead! Get a clue what’s happening to you. Its rule #2 !

3- BE AN INFORMATIVE PATIENT if you get sick like I did.. you might wanna make yourself a couple lists. List 1 is every symptom you think you might have. Try to be descriptive about what you’re feeling. Is it a burning pain? Or stabbing? Or cramping? You may not have an immediate point of reference.. just give it your best guess. Don’t leave out that burning sensation everytime you play with yourself. Tell your doctor EVERYTHING. Its important that he knows it all.. and you aren’t as interesting as you think you are. He’s heard this before. You have to have full disclosure here. List 2. All medications.. vitamins.. supplements.. etc. that you take . If you swallow it or put it in or on your body. Put it on the list. Also. Lots of times they need to know your typical diet. Keep track if it the week before your appointment. Be honest. If you ate at McDonald’s 6 times last week.. its probably important for them to know that. I’ll add a third list.. a list of all and any questions you can think of.. write them down as the questions pop up in your head. That way, at the appointment.. the doctor knows what is on your mind.. that helps a lot. So.. rule#3 here’s all about me.

That’s the big three! Three simple rules or guidelines to make your life easier if you end up sick or injured.

1- BE NICE 2- BE INFORMED 3- BE INFORMATIVE

There’s probably lots of little tips for people like me who are frequent fliers. But that’ll be a different post. This list is for the newbies. Every day almost.. someone does an admit request for our support sites.. they’re newly diagnosed and are overwhelmed with information. It’s was amazing the shear volume of information that came at me when I first got sick. Most people were blissfully ignorant about where poopy comes from.. that whole digestion trip. I knew every organ involved. Every inch. I know what villi do ! I can spell gastroenterologist without spell check. 30 years ago.. the available information was much less easy to come by. Today you have almost instant answers for any disease. Use it. Make your life easier.

A little life lesson from a dead man who’s still talking…

PRIOR PLANNING PREVENTS POOR PERFORMANCE.

Be well my friends

[deadmantalking117]

MO'MONEY!- MO'MONEY!- MO'MONEY!

I told you before.. Dr’s gotta get their coin! Who can blame them.. it’s an amazing thing to be a doctor. Years of study followed by years of 20 hour days. So people can throw up on your shoes. People’s lives are in your hands.. you’re wrong.. they die. You get to see why some Drs are frankly assholes.

I’ve been lucky as hell.. relatively speaking. I’ve almost always had wonderful Drs. Do right now. Not a lemon in this bunch. But oh my.. there have been some! Some Drs are Drs for the same reason some religious people are religious.. they love to rule over peoples lives! They wanna be in charge of you! They get oh so offended by any questions! Do as I tell you! Or DIE! I had this one GI.. Dr. Pencil Mustache. Dr. Pencil Mustache was actually my real Drs partner. My Dr was out of town right then.. Dr. Pencil Mustache was covering. They decided I needed a colonoscopy right now.. so gallon of colon blow to clear the decks.. night spent on the toilet.. liquid fire.. you’ve heard this story before.

For people like me who get frequent colonoscopies.. we get a little perk. We get knocked the hell out! For new patients.. they can’t always do this because there’s no record of how you react under anesthesia. Lot’s of people have bad reactions to anesthesia so they just let you stay awake.. tough it out. By the time you realize how horrifyingly painful it is.. it’s too late! You’re on your side and there’s 10 feet of camera shoved up your outhouse. If the Dr thinks this’ll be a one time thing.. why take the extra chance of more drugs? But we frequent flyers.. get the good stuff! They’re going to need us to do this every few years..dont forget they make bank off these test! Plus the whole.. keeping you alive thing. they know we do ok with the anesthesia so.. why not shut them up.. get this done quick and easy.. no whining! Being anesthetized is quiet honestly.. awesome! It’s almost fun.. I’m laying there on my side.. Dr’s looming over me.. holding the long camera tube thingy.. mask on..but you can tell.. he’s giggling under there. “Put him out”.. and the anesthesiologist pushes the plunger. Heres the fun part.. try really hard to stay awake! I haven’t made it past 5 seconds yet. It’s the perfect nap. You’re instantly unconscious..an hour or so later.. you’re awake.. feeling good. And strangely violated. I just know they make fun of my penis when I’m out. So while you’re sleeping.. Dr is running his oh so long camcorder all the way to the end of the line! If you’re interested.. draw an imaginary line.. Starting at the anus . Up the left side to just under your ribs.. then across your stomach to the right side.. down to under you belly button. Thats roughly the trip that this garden hose makes. But wait. There’s more! Because technology is super awesome. This combination camera and pressure washer.. is also a biopsy taker! A little wire loop can wrap around polyps and burn it off then pull it out for testing. Cool right!? Well because of Dr Pencil Mustache. I found out that tearing out polyps in your colon with a burning wire.. hurts exactly as much as it sounds like! The pain is monsterous. I was put out.. but Dr Pencil Mustache would only use a little anesthesia.. cuz he was paying for it or something. Within seconds I was very wide awake! I was sure to let him know this.. but like I said..they’re his drugs and he didn’t like sharing. The anesthesiologist asks him.. should I put him back? This idiot says.. No… we’re almost out.. only 2 more biopsies left! Then BURN! There’s really no way to adequately describe the sensation.. bad.. leaps to mind. I screamed. The anesthesiologist says “Dr!?” Fine.. he says. Back under I went.. thank God. I’m already in the hospital.. so afterwards they wheel me back to my room.. and the next day Dr Pencil Mustache rolls in.. large and in charge! Doesn’t say a word.. just turns off my t.v. and starts kinda yelling at me.. Dr: You’ve got serious disease!

Me: I’ve been told that!

Dr: you’re intestines are in bad shape!

Me: I believe you! So far.. this isn’t really new information.. and why is this dude so cranky?

Dr: you’ve gotta do this!.. take that!… eat this stuff!… you better listen to what I say!

Me: ummm. Ok.

Dr: I don’t know why you’re so sick!? Did you even know that there aren’t as many nerves in the guts as there are elsewhere around your body?

Me: there seems to be plenty actually. How many nerves does it take to feel bad? Maybe next time you take those out instead ! Two birds and all !?

Dr: you need to get tougher! Eat better! Shape up!

Me: (in my fantasy) I shoot him in the guts with my 20 guage.. then I yell. “Get tougher! Eat better! Suck it up! There’s hardly any nerves in the gut! Why are you crying!”

Aaaand scene!

Actually most of that conversation happened.. he was off the chain rude. When my Dr got back two days later.. I complained.. he said he understood.. he actually got that a lot.. his partner was a brilliant technician but bad with people. Fortunately I wouldn’t have deal with him anymore.

My point is this..

You have to be you’re own medical advocate. It’s on you you keep looking until you find the right doctor. Don’t settle for whichever one shows up first. Or by an ad in the phonebook. Finding the right doctor is the most important thing you can do. You are finding a person that you want to be responsible for keeping you alive. You really should put a little effort in to it.

And it’s actually really simple. Well except for the money part.. that’s usually hard. Finding a doctor who will take your particular insurance.. have a reasonable copay… that’s the hard part. But the biggest thing.. the easy thing. Find a person you like. Their personality, do they seem to like you? I know Drs are supposed to be aloof and not emotionally involved with their patients. But the best doctors actually do care… of course they care.

Money, money, money. It’s a big consideration.. because of my circumstances I’ve had doctors write off their copays.. so they could keep seeing me. I’ve had doctors write me off.. because I couldn’t pay. I had this guy.. sent me a nice form letter.. says he can’t treat me anymore.. because I owe 150 dollars in copays. It always seemed like he really liked me though.. I assumed that the business office just sent me the letter.. he likely never knew about it. You see.. a doctor’s practice is a business. And business is booming. Lots of diseased maniacs like me.

For now.. vote with your dollars. Don’t settle for a doctor you don’t like. It’s too important of a relationship. This guy or girl doesn’t have to be your new BFF. You don’t have to spend hours together braiding hair.. and gossiping. You do have to be comfortable with this person.. you have to be able to be completely honest with them about everything.

Thats a hell of a thing

And if we could remove the money part from consideration.. it would be so much better for everyone. Your only thoughts should be.. is this a good doctor? Not.. Will he take a 3rd party post dated check?

[deadmantalking117]

MEL

In my mid 30’s I really started getting sick. All the time. So very sick. Up until now I was mostly ok. For the past 10 years since my diagnosis I was doing fine. But I had that Sword of Damocles hanging over my head. I had been told that I would die before I got to be 40. And there’s 40.. right over there! And for the first time.. I’m really sick.. a lot. Deaths coming for me.

So I did what you’re supposed to do. When I got sick.. I had my Dr admit me into the hospital… that’s where you go to die.. right?

Some episodes were a few days.. some a few weeks. But they were many. Being fed thru a tube. IV tubes everywhere.. so many needles..

Part if my routine was walking the halls. To help recover.. it’s very important to keep moving. The more you can force yourself to get up and move.. the faster you recover. It’s pure Newtonian physics.. a body at rest stays at rest.. a body in motion stays in motion.. so get moving. Keep moving.

Walking the halls is an ordeal. You need to bundle up all your tubes and IV’s.. unplug the pumps. (They’re battery backed up) and make sure you dont get tangled up and fall.

But I put on my monster feet slippers and headed on out. Usually twice per day.. I would try to get 10 laps around the ward. Most times I barely noticed other people.. I’m in astonishing amounts of pain.. and focused on making the next lap.

But I could see other rooms.. with other people. As I passed by one of these.. a little shell of a girl.. laying on her bed was being smacked on the back by nurses.. they had to do this several times a day to break up the phlegm in her lungs.. so she wouldn’t drown. I had noticed her before.. another frequent flyer like me. This time she gave me a little smile and a weak wave. She’s seen my laps.. and had started counting me. One day as I’m passing.. she called out.. “that’s 6!”

I stuck my head in to say a quick hello. And my entire life changed.

Mel was a little waif of a girl. She was fighting a couple horrible diseases that were wasting her tiny little body.. she was terminal.. but hanging on hard.. at 19 years old.. she looked 10.. she was so frail she couldn’t get out of bed… ever.

I was 36-37 and facing my own mortality. But this girl never had any real life. At 19 .. She’s never had a boyfriend.. or any friend.. She’s been in hospital beds her entire life. Nurses were her only human contact, besides her parents. But they had to work to support their dying daughter.. so they couldn’t be there a lot. I made it my mission to visit her as often as I could get out my own bed.

Most days.. as I did my laps. I’d stick my head in the door.. say hi.. ask how she was doing.. always a weak little smile.. “still here” she’d joke. Thats 4! Or 5! As I hobbled past. One day when I stopped by she asked me if I wanted to come over tonight and watch a movie with her.. as a permanent guest.. she got a good t.v. and a vcr.. her mom would bring her movies. “So if you are bored and wanna come by my mom will bring me any movie I want”.

I have an amazing wife and family. My times in the hospital were made easier by their visits and support. I was never lonely. But this sweet dying wisp of a girl.. only had mom and dad.. and they were killing themselves working to keep her alive as long as they could.

So. Movie night! I bundled up my tubes.. put on my monster feet slippers.. and headed over around 8. See.. the thing in hospitals is.. time is meaningless. 2 am.. just the same as 5pm. But mom left at 8 each night.. so she’s free! Our first movie was a Ray Liotta comedy/drama called Article 99. If you wanna see a story about veterans care.. its great. A must watch. We gabbed throughout the film. Each making jokes about the movie.. or our actual lives. Or whatever.. I was stunned by how cheerful and funny she was. How could someone this ravaged be so upbeat? I remember when I left that first night.. I had this overpowering urge to give her a hug or something.. but that’s impossible. She can’t be touched ! The nurses had told me was written in stone.. she was so prone to infection that you had be sterilized before any contact. They had to undergo a whole routine just to treat her! The only reason I could sit with her was because we were already in the same environment.. and I didn’t have anything contagious. I recall the time where I was in for a flare up. But I was also having sinus issues.. so her room was a no fly zone. When I could get up and walk.. I had to stand well back from her door and kinda yell in to her room. But she’d always have something to tell me. On days when I was too sick to get up from my bed.. we’d pass messages back and forth through the nurses..“she wants to know when you’re coming by for movie night.. and what do want her mom to bring?” Tell her..“ maybe tomorrow night.. ever seen Star Wars?” Things like that.

Most days.. I was way too sick to get up. But I made a special effort to at least do a couple laps.. so I could say hi. She’d always update me with her “labs” her blood count.. oxygen levels.. what new drug they were going with now.. there was always a new drug. Basically let me know she still alive. I’d tell her about the family.. “Kat says hi.. she’ll see you on her next visit” “kids are doing ok” things like that.

This was over a time period of about 6 or 8 months..I was literally sick all the time. Most days.. I’d get up.. vomit uncontrollably for a while.. have an astonishingly painful bowel movement or 6. Try to get on with my day. Over and over I’d go back to the hospital.. 3 or 4 days usually.. couple weeks sometimes… one particular stretch of 35 days being fed thru a tube stands out.

I was not a happy camper. But here was this dying girl.. who almost never got to go home. And she’s better than me. It bothered her that she was happy I was sick… but it was cool that we could hang out. I remember when she confessed this.. she had a small whisper of a voice.. because of the years of damage from tubes and drains. She talked kinda like a deaf person talks. But very quietly.. a husky whisper. I can hear her even to this day.. 25 years later. Picture her laying in her bed.. She looked a bit like the actress Kate Micucci. Just a smaller wasted version. One day the nurse tells me that Mel is wanting me to stop by and visit.. she’s doing really good. She also told me.. “You know she dresses up for you?” She would have the nurse comb her hair.. she even had her pretty nightgown set aside to wear when I was in the house. She had 3 or 4 different nightgowns to wear so she wouldn’t always have to wear hospital gowns. But one was her favorite.. apparently she only wore it when I was there.

Our total time together over this 6 or 8 month time span.. maybe a few hours total. 5 minutes here … 10 minutes there.. it always had to be me that visited.. and I was in no shape.. and as soon as I could get up.. I was gone. We had a few movie nights. I did make her watch Star Wars.. she said she liked it.. but I remember that we always talked thru the movies.. so I don’t think she even really watched it. She made me feel better.. first by motivating me to get up and walk.. but mostly by her relentlessly cheerful attitude. I’m not exaggerating when I tell you.. she was barely alive.. 19 years old.. but looked like a 10 year old who been hit by a bus. Yet there she lay.. smiling all the while. In her prettiest nightgown.

One Sunday afternoon theres a knock on my door.. Kat was out shopping and I was sick on the couch watching the kiddies. I open it and there’s 2 older people standing there.. GREAT.. church people.. I’m so not up for this.. I’m sick. But they weren’t church people.. they were Mel’s parents.

MEL DIED YESTERDAY.

They had gotten my address from one of the nurses.. she knew that I’d want to know. They told me how greatful they were to me. Mel loved me.. she talked about me all the time.. her mom told me she had the biggest crush on me.. if course I knew it.. but I’m choking back tears while these people I’ve never met tell me I was literally the only friend she ever had. She’d been born sick and wasn’t expected to make it to puberty. But she stayed around for almost 20 years. Mom tells me that her numbers were always up when I was in the hospital. About how her friend Steve was back in and we’re going watch such and such movie maybe tomorrow aftetnoon. About how they’d always wanted to meet me.. but she didn’t want them to embarrass her in front of her friend! Dad was a butcher.. he offered to make my whole family a barbeque.. they wanted to do something for me. I was too sick to eat anything then.. but got their number and promised to call when I was up and around. I never did.

Not long after Mel died. I quit going to the hospital. It wasn’t her death.. it was a bunch of reasons.. mostly I felt like something had to change. But I’ll tell you that story another time.

Before they left my doorway.. I asked the one question I never even thought to ask Mel. I knew what diseases she had..I can’t recall what they were.. some long medical thing that doesn’t really do the disease justice.. like toxohistiplasmosis leukasemia. It’s just a bunch of letters slapped together to try to explain the death of a beautiful young woman. Who gives a shit what you call it.

I asked them.. “ what is Mel short for anyways? I never asked her. Was it Melody? Or Melony?”

Her name was Melissa

I was her only friend for a very short period of time. And she absolutely changed my life.

Her parents are likely long gone.. they appeared to be in their 60s back then.. they had no other children. Kathleen and I are probably the only people who know this person even exsisted.. even if only for brief moment in time. But she did exsist.. And she helped shape the course of my life.. simply because of who she was.

She did exsist.. and I was her friend.

[deadmantalking117]

WHO THE HELL ARE YOU?

My name is Steve

I’m now almost 58 years old.. I told you before.. I have Crohns disease and I’m supposed to be dead a long time ago. And while I’m still here.. I have something you need to know.

In my long and painful life I’ve watched my beloved country go from the ideal of the rest if the world.. to an almost unrecognizable 3rd world joke. I’m not going to go on about politics (much) or all the issues that we all worry about.. my topic will be one in which I’m am absolutely an expert.. the United States healthcare system and what it’s like to be trapped in it. Whether you agree with my political views or not.. if you think I’m just a special snowflake looking for a handout or whatever.. you won’t be able to say that I don’t know what I’m talking about! I’ve lived with a serious disease for 35 years.. now I am watching my leaders do their very best to actively harm poor and sick people.. ME! and I’ll be damned if I wont speak out.

I’ve had enough of millionaires telling me to fuck off and die.. so they can get more money. If it was just me… I’d guess I’d have to just say… bad luck.. gotta die. But its the vast majority of Americans that are somehow involved in this system.. anyone who’s ever had a checkup… a toothache.. a baby… a skinned knee… i got a fishhook caught in my face by my best friend Teddy when we were like 10… it would still be there today if Dad didn’t take me to the ER and get it cut out! My point is… almost every person in this country needs a doctor at some point in their life…Why are even still discussing this !?

See… here’s my thing…

I DIDN’T DO ANYTHING WRONG !

I’m not a bad person.. I was young, healthy, in pretty good shape. I was 25ish . I don’t drink… didn’t then.. didn’t do drugs. (Much). When I was a teen my brother Chuck and I would play tennis for 6 hours some days.. my friend Robert got me jogging a couple miles a day when I was 20. I was healthy fast and strong. Then over the course of a month… I dropped 30 pounds.. from 140 lean and athletically built to 110 pound skeleton. Thats it.

I DIDN’T DO ANYTHING WRONG!

I’m not a bad person. I didn’t deserve this. I hold doors for people. I don’t treat people badly. I pay my taxes. Give to charity. I’m kind, considerate, my momma raised me right. My dad taught me how to talk to people. He could sell ice to Eskimos. He always said that I knew how to tell someone to go to hell.. and they’d ask me for the quickest route. Then say thanks! I have a wonderful beautiful wife.. 3 kids.. 3 grandkids. My family is the joy of my life. I have the very finest of people as my friends. My brother… Sister… in laws… cousins.. nieces and nephews.. are all.. everyone of them - class acts.. quintessential Americans.

And I want better for them.

THEY HAVEN’T DONE ANYTHING WRONG

Every day my facebook feed is filled with mostly 2 things.. the legions of my walking wounded… my brothers and sisters online who also have been told they have a life threatening disease..(not to mention my actual brother and sister who are middle aged… so of course.. health issues) and have to go to extremes to stay alive.. they also haven’t done anything wrong. The other thing I get a lot of… news about healthcare reform.. and it’s always bad. I just got out of the hospital after a nice “vacation” as we call it. And while I’m laying chained by IVs to a hospital bed.. my own leaders are going on about how we’re the greatest country in the world because we DON’T take care if our own! We’re free !

But .. I DIDN’T DO ANYTHING WRONG!

except make the stupid mistake of being sick in the greatest country in the world. I’m not a bad person. I didn’t deserve this.

My last question…

Why do we let the rich use the ignorant against us? We can’t stop stupid. People will live and die happily and proudly stupid. I’m ok with that. But… somehow.. the ultra rich have harnessed the power of stupid. They’re using it against US. We’ve got to take back the stupid vote.. it’s up to us to make these people understand that they vote against their own best interest! It’s as simple as this…

Wouldn’t you like to be able to just go to the doctor.. or dentist.. or hospital.. anytime you have a problem? No muss.. no fuss.. just quality care on demand. I HAVE THAT! It’s called MEDICARE .. it’s awesome.. I want it for everyone. And it can soooo much better. Every other country in the world practically.. has it better than you do. Thats just a fact. I’ve done tons of research.. talked with people from other countries. I read everything I can find.. then I verify facts. I’m a healthcare terminator.. I’m obsessed.. ask my family! Watch the documentary called “Sicko” it is absolutely accurate and factual.. shows you how other countries have it.. and how badly we have it. Regardless of your political views.. just this one subject..

I’ll fix the rest of the country after I deal with this.

Cuz…I’m the dead man who’s still talking And I’m not going to stop.

[deadmantalking117]

LOST IN THE SYSTEM

The United States healthcare system is a nightmare.

Before any of you super patriots start raging about freedom… just dont bother! You have no idea what you’re talking about and I don’t have the time.

People like me.. I’ll trade some freedom for a better life. You know whats free about our system? I’m free to fuck off and die anytime I want ! Everything else in my life is a nightmare of expensive. Precriptions that are potentially thousands of dollars per month… $$$ for co pays.. multiple doctors.. each with their own charges.. deductibles.. radiologists.. labs for blood and other tests.. and if you’ve ever seen a post surgical hospital bill.. it’s like an epic poem to financial ruin.

My first surgery was to repair something called a fistula. My intestines had torn open. Ripped through the muscle and tissue. Until it got to right next to my rectum.. when it began to grow… cuz it couldn’t get out. I went to a proctologist.. thinking it was a mutant hemmoroid.. nope ! All he can offer me right there was to drain it.. that would relieve the pain… but it would keep draining until I have it surgically repaired.

So since it was his office.. not a surgery center. No anesthesia.. nothing to numb it. Just bent over a special table that got my skinny butt nice and elevated.. then with a scalpel… SLIT! about half an inch left of where the poopy comes from. All I remember was a bolt of lightning going through my entire body.. then out. I came around when the nurse waved smelling salts under my nose. They packed gauze around the wound. And I staggered out the door. While Kat went to bring the car around.. I sat on a bench.. apparently looking like death warmed over. A nurse from a different office who was on her way home sat and waited with me until Kat got there.. then they both piled me in the car. After a month or more of wearing full sized maxi pads to absorb the constant drain of stomach acids flowing from an open wound one half inch left of my anus.. after flushing it everyday so it wouldn’t get infected. I was scheduled for surgery. During this time. My beautiful new bride and I moved to a different state.. started new jobs. Were just starting our lives together.. and I’m going through maxi pads like they’re toilet paper. I remember when I was interviewed for my job.. trying not to scream when the interviewer said “ have a seat!” Sitting down was not pleasant.

But I had my very first surgery. A fistulectomy.. technically it’s a fistula repair. They went up along the tear.. cleaned out a bunch of infection and sealed up the leak. I made it through just fine.. until I saw the bill.

A post surgical hospital bill is a remarkable thing. There are charges for things you never even thought of.. every item that you touched is accounted for. Itemized. Every person who even just spoke to you is on there.. my personal favorite was these 2 lines

#112… tylenol… XX mgs…… $10 #113… tylenol… XX mgs…… $10

I was billed 20 dollars for 2 tylenol… each one individually listed and billed. This is 1985.. I’m pretty sure I could’ve bought a year supply of tylenol for my whole family for 20 bucks.. but there it is .. $20 for 2 tylenol.

They list every drug.. IV pumps.. bandages.. all the stuff used before.. during and after surgery.. the bed.. the sheets.. pillow fluffing. They accounted for every second.

Final tally.. $250,000

I’m just starting my adult life.. with my beautiful new wife.. my perfect children.. and before it even starts. I’m a quater million dollars in debt !

I’ll get around to other issues as we go along here.. I’m just getting started.. but that very first quarter million dollar hospital bill is the favorite. I didn’t even know about Crohns disease yet.. that was a couple years down the road. But I did know… I have no possible way to come up with a quarter million dollars! Oh yeah.. that didnt include the couple grand for all the other stuff from before…

Mid twenties.. newly wed.. new family.. new life.. financially devastated before I carried her over the threshold.

For the past 35 years I have been the systems bitch. And it’s a monster that demands to be fed.

Me? I’m still a dead man talking

[deadmantalking117]

SHIT THAT YOU NEVER WANNA HEAR...

For the first couple years i was sick off and on with stomach flu.. or food poisoning.. one guy was positive I had leukaemia or possibly I was diabetic.. maybe it was the plague.. I was pricked and probed in ways alien abductors couldn’t concieve of. It’s a pure terror to be told that you’re going to have real tests done on YOU. Not “draw a little blood” type shit… I’m talking anal probes. (I have a seriously funny story about my first “lower G.I. series” I’ll tell you later… it’s hilarious).

One day… back to E.R. only this time the doctor says “you need surgery right now… Or you’re going to die” wrap your brain around that! A medical professional with a doctors licence.. white lab coat.. clipboard.. the whole shebang. And he’s really handsome… my wife had a huge crush. Especially after he saved my life. And now he’s telling me “YOU ARE GOING TO DIE SOMETIME IN THE NEXT FEW DAYS IF WE DON’T OPEN YOU UP AND TAKE OUT A BUNCH OF SHIT THAT’S TRYING TO KILL YOU”

I was like 28 now… been married a couple years .. had a step son.. a toddler daughter.. and an infant son. I had a good job that provided insurance. But finances were the last thing I thought of. (Way more on that subject later) this handsome doctor says the last shit you ever wanna hear.

YOU ARE GOING TO FUCKING DIE!

I remember thinking that I wanted to jump out of the bed .. rip out the IV.. run away! But my legs weren’t working right that second. Dr. Handsome dude looks me in the eye and says “ Have you ever heard of Crohns disease?” ME: you mean like an old witch lady? I have old witch lady disease? That don’t sound good !! Dr. Handsome dude: we’re pretty sure you have Crohns disease.. you know.. I studied under Dr. Crohns assistant.. and I actually met him.. the guy who discovered this disease that we think you now have ! ME: COOOOL! Wait… what ? I have a disease and it’s named after some dude who was named for an old witch lady? Dr. Handsome dude: what you have is called Terminal Illeitus! And we’re gonna gut you like a trout tomorrow at 5 am. First we’re going to lay you out and strap you to a cruciform table. You’re going to be strapped down to a cold metal table Jesus style! Then me and the gang are going to get whimsical with your innards ! First we cut you from stem to stern.. then we pull out all of your intestines and squish around them by hand until we get to the problem area. We cut the bad stuff out and then we stitch the 2 ends back together.! It’s horrifying to even see it done! ME: TERMINAL ? TERMINAL? TERMINAL? WHAT ABOUT TERMINAL !? I KNOW WHAT TERMINAL MEANS ! I remember that I chuckled when he finally stopped telling me about the horror that he was about to inflict on me. I said.. Go back to the beginning Terminal ? Terminal Illeitus? Crohns disease? WTF!??! Dr. Handsome dude: oh no! Not terminal like in a terminal illness ! Terminal as in. You have Crohns disease in your terminal Illeum.. it’s where your small intestines turn into your large intestines. It’s also where your appendix is located. Were taking that too. Just to eliminate any future issues. Nothing wrong with it really.. you don’t need it.. we’re not really sure what it’s for anyway. A few inches.. maybe a couple feet of your small intestines.. possibly some or all of your large intestines.. possibly remove everything from asshole to mouth.. you could wake up with a tube down your throat.. and a big giant poop bag surgically attached to the side of your body. We wont know for sure how much we’re going to cut out of your 28 year old body till we get in there and squish around! You remember… you’ll be layed out completely naked.. all Jesus style! Strapped naked to a table.. we’ll probably make fun of your penis after we knock you out! And oh yeah! There’s a decent chance that you could wake up dead! Shit happens when you cut people in half.. get all squishy up in you.. we lose a few.. you could be one. Or maybe just just wake up in a persistent vegetative state ! That one sucks.. you’re alive.. but locked inside your body.. hopefully this wont happen to you. I’m really good at my job.. I think you’ll be fine ! ME: yeah… I don’t wanna do any of that stuff ! How about I just go home.. take some pepto .. lay down. Think about shit for a couple years.. see how things go ? I’m actually feeling much better ! Dr. Handsome dude: thats because we have you on really great drugs.. otherwise you’d be in agony ! And once again.. you have 12 hours to sign the form.. or Die ! So we’re doing this bright and early. See you in the morning. I’ll be sure to wash my hands! (Side note. All surgeons make the same joke to you before surgery)

ME: (well just picture that famous painting by Munch.. the Scream) words can’t even form. My wife left that night crying. I lay in a strange bed with tubes and wires all over and in me. Terror doesn’t really do the feeling justice. In a few hours from now I’m going to be cut wide open after being physically strapped to a cross shaped table.. my arms strapped down at 90 degree angles.. my feet strapped down together..all Jesus style. Completely naked. While people I know nothing about make fun of my penis and hurt me. I DON’T WANT TO DO THIS !

I’ll talk about the joys of majorly invasive intestinal surgery another time. Make it my holloween story ! Did you know that another issue in some surgeries is that the anesthesia sometimes doesn’t work right. You’re paralyzed but can feel them cutting you ! So.. yeah.

I did wake up.. everything basically went to plan.. I made it ! Woohoo ! But now I have a permanent disease.. it can’t be cured.. and most treatments are ineffectual. This is when my story starts.

I hope you check out some support groups.. there’s millions of stories like mine. You need to hear some. Everybody is talking about our healthcare system these days. I’m starting to write about it because I am an expert in the subject. I might get a little political sometimes. But I will tell you the unvarnished truth of my terrifying life. This kinda thing happens to thousands of people every year. It can happen to you. You dont wanna do this !

Remember ..I’m a dead man who’s still talking …

You should listen to me

[deadmantalking117]

DEAD MAN TALKING...

my first tumblr post.. I’m going to start writing about being a diseased maniac in the greatest country in the world.

Around my 25 birthday I was thrust into the loving arms of the U.S. healthcare system. I was going to find out in the next couple years that my constant sickness and weight loss were due to Crohns disease. You’ve never felt the adrenaline rush you get when a doctor tells you that you have a horrible disease and it’s going to kill you.. slowly..painfully. ( you extreme athletes should get a disease.. it’s Awesome!) My doctor had a little pow-wow with me, my new wife, my mom, and my sister. He said I’d likely be dead before 40. I turn 58 in November. I was supposed to be dead 18 years ago. My posts are going to give you the real story in American healthcare. Some of it will be surprising..some of it was insanity. I’m going to tell you what I learned in the past 35 years of getting the shit kicked out of me. I’ve started a Facebook group called Game of Crohns. It’s a support group for anyone who has or knows someone with Crohns.. colitis.. IBS.. hell.. well take anyone ! If you want the real story about American healthcare.. I recommend you join a group. Mine.. anybody’s. Crohns.. Cancer.. heart disease.. theres online support for most everyone out there. And if not.. you can come and join us at Game of Crohns over on facebook. But get the real story of whats happening in our country from the people it’s happening to. You don’t have to listen to propaganda from the left or right.. it doesn’t matter if you’re democratic or republican . Educate yourself. Because one day.. you will absolutely get thrown in to it… and you are not prepared to deal with it. I will teach you.

Be afraid… be very afraid

My name is Steve I’m a dead man talking

[deadmantalking117]

SICKO

I've made it my mission to be a sort of the unofficial publicist for the documentary film called "SICKO". It's an absolutely brilliant look at the United States healthcare system. And a look at the healthcare systems in other countries. I have made it a priority to try and verify the information thrown out in the film. Every single word of it is true as far as I can tell. I've spoken with people in other countries, without exception, they love their healthcare systems. And without exception, they kinda feel sorry for us Americans! Somehow we have become a cause for pity among the rest of the world. Our healthcare system is ranked among the worst in the world. The richest, most powerful nation on earth, offers less care to it's citizens than a lot of so called third world countries. The very poorest people in England, have a longer life expectancy than the richest Americans. The infant mortality rate in America is higher than El Salvador. How did this happen? The simplest answer is this. For Profit healthcare. Our entire government, both sides of the aisle, are bought and paid for by insurance companies, pharmaceutical companies, all sorts of businesses that make billions from sick people. A particularly disturbing irony, is the fact that all those members of Congress and the Senate, have the kind of healthcare that they continue to deny every other American. The film documents the stories of people like me, who's only mistake was to get sick or injured in America. How insurance companies make billions each year, by denying coverage for legitimately sick, up to date in their coverage, people. By doctors who openly violate their Hippocratic oaths, and cause serious harm and death, all for profit. One doctor testified before congress how she got richer and richer finding loopholes so her insurance company employer could get out of having to pay. Next, a parade of viuals. Profits of just a few of these businesses, the incredible salaries of the people who run these businesses. The former members of government who left their jobs to work for the healthcare industry, for astonishing paychecks. The quotes from various politicians who tell complete lies about the evils of socialized medicine. And again, I've personally checked these out , talked with people in other countries, and all I can tell you is this... "Brothers and sisters.. you've been HAD! " we don't have a healthcare system, the healthcare system has US! All through this film are decent, hardworking Americans and they all have a similar message as mine. I'm a good person. I didn't do anything wrong. Why is this happening to me? The film moves on to interviewing people in other countries. I wont go in to details about how much other countries get for their tax dollars. Suffice it to say that every bit of their much better care, is covered by the state. In England, doctors get bonuses for making people healthy. In America, doctors get paid for the tests they run. The results are pretty irrelevant. As a fiscal conservative, I want a system that makes better economic sense. We pay higher taxes for less benefits. On top of that are added costs for insurance, then copays, deductibles, prescriptions etc. Americans pays thousands of dollars per person each year, to get insurance that doesn't pay for anything. Socialized medicine could eliminate all of that. And lower tax bills. Its just an economic fact. How many times have I had to forget about filling some prescription or other, because I couldn't afford it? More than I could count. How do I feed my children and pay rent on a fixed income, after picking up a prescription that will cost me over $1000 a month for next 6 months? Sicko is full of those stories. I'm not unique at all. Trying to get people to watch this documentary is a hard sell. I get that. It's depressing. The stories of people like me with fairly simple problems, who were ground up by the system, and left by the side of the road. Stories of actual hero's who, after doing their patriotic duty, were told to go away and die quietly. I hear over and over how we want to make America great again. But how great can we be when we neglect our own veterans? Not to mention regular citizens like me. Whats so great about a country that gives everything to 1 percent of the very richest people, and actually takes from the rest of us? Before the low information super patriots descend on me with torches and America first signs.. I've already heard it all before. " if you love those other countries so much, why don't you just move there?" The answer is easy. I'm a proud American. I love my country and I want better for all of us. This is me fighting for my country. And I have a very simple solution. Steal the best ideas from other countries! I've read over and over how nobody knew that healthcare was "hard" . But the fact is. It isn't hard at all. Most countries have already worked out the hard parts. For decades now, they have worked out the bugs, refined their systems into well oiled machines. In other countries, their people don't give a thought to it. They get sick or hurt, they go to the doctor. They don't have to consider money. Its never an issue. So all we have to do is use what they've learned already. With our great wealth, we could put them all to shame. A truly great country would teach the rest of the rest of the world how to take care of their people. Lead by example. Instead, we're bringing up the rear. Our system is ranked by the World health organization as one of the worst in the developed world. How can we let this stand? I've written before about how almost every single citizen will need to see a doctor at one time or another. Why can't we have a system that takes care if everyone? It's cheaper, more efficient. The only drawback that I've been able to find? Less money for billionaires. Be well my friends You really don't wanna get sick here!

[deadmantalking117]

SOME SHORT STORIES

This post is for my sister. Stacie suggested I tell some of the little, usually funny stories. The weird things that have happend to me over the years. There's probably no lesson in these, just little slices of life. Hope you enjoy them. STACIES TACO RUN. When I was going in the hospital regularly. They had a regular routine for me. First few days, NPO. A latin term for Nothing by mouth. No food, no water, nothing. It gives your guts a chance to calm down, clear the blockage. Eventually you go to clear liquids.(water, tea, broth). And then full liquids. (Cream of wheat, cream soups, pudding). Then solid food. (Bland hospital food) By the time you get to real food, you haven't eaten in days. Your intestines are good with it, but your stomach HATES it. And every commercial on t.v. is about food! When I got back on solids, I craved cheap tacos. No cheese, no lettuce, just ground up meat, easy to digest. I crave savory over sweet. Since Kat was home with the kids, Stacie would smuggle me in a couple tacos at night. After visiting hours. The security guard made her a deal, he'd let her up for a couple minutes, if she'd bring him a couple of tacos. So for about $5.. she made two people's lives much better! WILD BILL There was a well known homeless guy in our town. Wild Bill would panhandle up and down the main drag through town. During my many stays in the hospital, I'd get occasional roommates when the wards were busy. One day they wheeled in Wild Bill. Wow! An actual celebrity in my room! We chatted about our lives.. "whatcha in for?" Kinda stuff. He told me the story of how he killed the man who raped his daughter, spent years in prison, became homeless. He HAD to smoke. He'd go in the bathroom, set off the alarms. Nurses would scold him, take his cigs. But he always had more stashed away, somewhere. He was in for pneumonia, but after 2 days of getting yelled at. He split. Just had the nurses take out his IVs, and out the door. The nurses tell me this happens all the time with him. A few days after he gets out. I'm still in, and my sister comes for a visit. She ran into Wild Bill at McDonald's. They'd met when she came to see me. He gave her a bunch of McDonald's gift certificates he had panhandled. The were for Kat and the kids. He felt sorry for me, and all the crap she had to go through. He wanted to do something nice for her. I remember Stacie just trying to get the story out when she showed me the gift certificates, tears were flowing from both of us. BUSTER! I've had several occasions when I had to share a room with someone else. One old guy got tangled up in his tubes and down he went. I'm trying to find the nurse button, but its 3 in the morning and I was asleep. I'm trying to keep this freaked out guy calm, not tangle my stuff in with his. And find that damned button! Eventually the nurse comes in and fixes everything. It's what they do. But my favorite was the old guy who had dementia, he was in for pneumonia, and like most roomies we'd chatted a little, knew each others names, what we were in for. One afternoon, I'm half asleep, half watching some food commercials on t.v... when I hear... "BUSTER!" The curtain between us is mostly drawn, I can only see his legs. "BUSTER! get down from there!" What is this guy talking about? Who's Buster? Turns out.. I am Buster! Over and over he yells at me "Buster get off that bed! Get down from there! Buster, you're being a bad dog!" For 5 minutes at least. I call for the nurse. She asks what's wrong. But he's really pissed now. "Buster get off that bed! You know better! BAD DOG!" Eventually she gets him calmed down, thats what they deal with, its what they do! Later that night, he asks me.. "Did you see Buster earlier? Hes a good dog, but he don't listen for shit!" And the nurse's call me Buster for the rest of that stay. OOOOOPSY! I'm in my mid 30s.. I spend a lot of my life very sick, or actually in hospitals. But I also have a beautiful sexy wife. How to reconcile those 2 things. Hospital sex! Come on, you know you wanna try it! It's one of those times when I have my own room. I've been in for a few days already, so the nurses leave me pretty much alone unless I call them. I'm doing better, starting to feel like a human being again, probably be out tomorrow or the next day. Kat comes by for a solo visit, the kids are at grandma's. I put on my best "moves" ( I brushed my teeth for the first time in days). A little begging later, and it looks like this is going to happen! We're making out, fooling around a little, she gets up to get into better position. And steps on my IV. Yanks it right out of my arm! Blood is flowing down my arm, the IV is flooding the floor. We get ourselves situated, (buttoned up) and I paged the nurse. Damn! I just stepped on my IV and yanked it out! She looks at Kat and me.. "Uh- huh" she gets me re hooked up, cleaned up what looked like a slaughter house worth of blood. On her way out, she tells Kat... "Your blouse is buttoned up crooked" Just a few of the unimportant things that happen. I guess the only lesson to learn is this. Most days, when you have a permanent serious illness or injury, life can suck. Take a minute to appreciate those rare moments that keep things interesting. Stories that are embarrassing for you are comedy gold for others! I'll leave you with the immortal words of Monty Python. "Life's a piece of shit... When you look at it.. Life's a laugh, and death's the joke.. It's true.. You see it's all a show.. Keep em laughing as you go.. Just remember that the last laugh Is on YOU! So - Always look on the bright side of life!

[deadmantalking117]

IN MY LIFE...

When I started writing about my experiences with the United States healthcare system. All of the doctors, nurses, radiologists, phlebotomists, office staff, government workers, support groups, the hundreds of new partners drafted in the fight just to keep me alive. I mostly thought about what a special little snowflake I must be! Of course I'm not unique, there are millions of us who require a bunch of special care just to make it through the next day.. and hopefully the days after that. Someone like Stephen Hawking, who needs a team of caregivers 24/7 just to keep that brilliant mind working to solve the problems of humanity. For my money.. It's a bargin! But what about someone like my friend Mel? Was she worth it? For her entire 20 years of existence. She used massive amounts of resources just to keep her alive. She never worked a job , never produced anything, never did anything. Except, she had a profound impact on one person's life, and if you're reading and getting anything from my posts, the ripple effect has now effected your life. And your life has an effect on all those around you. And all those people have their own circle of people who are effected. On and on it goes, like ripples in a pond. So one tiny, wasted little soul who's life consisted of being completely bedridden at home or in a hospital. Who required constant care, and millions of dollars in resources. Has now had a positive impact on many different people's lives. And the ripples keep spreading. I realized that in my life, virtually every person I've ever met has had or will have some personal face to face time with medical professionals. I'm going to give you a quick rundown on the most common of these issues. And they're all people I know. Just regular Americans. Just like you. MOM AND DAD Mom got breast cancer around 1979, had a double radical mastectomy, then reconstructive surgery. A breast cancer survivor success story. Dad was fairly healthy his whole life. A lifelong smoker who had triple bypass before 60. He had prostate cancer and emphysema as a senior citizen. But he basically died in hospice care of old age. CHUCK My little brother was a testament to good health, but weirdly accident prone. As a little kid he made a few trips to the ER for launching his head through a glass door, or snacking on things that he really shouldn't have. STACIE My baby sister. She's fairly healthy, thyroid issues, and those things that all middle aged people deal with. But she was the caregiver for my dying mother and her very sick huband. Before they died, Stacies life was a series of doctors and government offices. Endless phone calls, and those ubiquitous government forms. KAT My own beautiful wife. I found a small hard lump on her left breast one night. Through one of the woman's healthcare organizations, she got the exams, mammograms, blood tests, etc. That thankfully showed it wasn't cancer. But she will have to be rechecked every few years from now on. MY CHILDREN AND GRANDCHILDREN I remember their births, each one in a hospital with bunches of doctors and nurses. Nothing extraordinary, but just getting born into this world safely, requires thousands of dollars in resources. DAVE AND ANDREA My lifelong friends. Solidly middle class, middle aged folks. The very definition of the phrase "salt of the earth ". The kind of people you wish were your friends. But these are mine! Get your own! Dave's had asthma and those more common issues that creep in as we age. Andrea has cholesterol that's turning her blood into pancake batter. Always pills, always more tests. Plus they're looking after their aging parents. And the random issues that come up among their kids and grandkids. PAUL Another good friend. Whatever you call a male version of Earth mother.. thats him. He wants to help everybody. A former military man. His stories about the Veterans Administration will infuriate you. One day I hope to write more on this subject. But my big question is.. Why do we make it so hard for our "Heros" to get much needed medical help? This man served his country. We must take care of him, and all the others like him. I could go on for days. Even this list of the common, day in, day out issues only scratches the surface. I could go into the time my daughter got a blood infection as a baby, all those tests, all those meds. When my 2 year old son got a severe respiratory infection and spent 2 nights in a hospital. How Paul had to spend at one point $600 a month. because the VA wouldn't cover a treatment they said he needed! All the different appointments that Dave and Andrea go to each month, not just for themselves, but in support of their parents, and children, and grandkids. They actually spend more time in doctors offices than I do. Take a look around you. Give a thought for your family, your friends, that nice cashier at the grocery store you always chat with. Every single one of them has had to deal with the healthcare system at one point or another. Something as basic as my grandson getting a physical, so he can play soccer. Or my granddaughters, just getting born. My last example SUPERHUMAN HEALTHY SPECIMEN I don't know any personally, but they're out there. His or her only contact with the healthcare system so far, was getting born. ( and they born in a cabin somewhere, with only midwives and harmony crystals in attendance) They've had only the basic stuff as kids, vaccinations, check ups, physical for some kind of sports. Never been sick a day in their lives! Don't have a regular doctor, don't need one. Even their teeth are perfect! Never had a cavity. Except that takes regular dental check ups, sooo. Just the most basic contact with anybody related to the medical industry. But these wonderfully super healthy, never get sick, people. They get to live life to the fullest. And occasionally they get injured. Break a leg skiing, busted up paragliding over a rocky beach. Motocross jump goes sideways.. many broken bones. There's the super strong, never been sick a day in her life, perfect teeth, marathon runner/vegan who's on her way home from a run, and her car gets crushed by a dump truck. Or finally, the guy who's never, not once gotten sick. Never had a cold or sniffle. He's managed to go 75 years without a serious accident. But now he's old. Old leads to dying, and even the healthiest person ever, dies eventually, and that means doctors, nurses, and all those wonderful healthcare professionals. All those thousands of dollars in resources used, just so that this guy can die. Theres no avoiding it. Every person in this country will avail themselves at some point, of our healthcare system. Does profit really need to be a factor in this? Instead of some people making money off of the backs of the sick and injured.. how about we take all that money and use it for helping ourselves? I'm afraid to say.. it really is just that simple. I'll write more about this in the future. But for now.. take that minute to realise how we're all, every single American, involved in this. It could be so much better for all of us. Be well my friends