I am a Rotten Human Being and do not deserve my PCP

This is sort of my public apology for being a rotten human being....I carry some baggage from what doctors did to my wife 20 years ago...my wife calls it PTSD.

Regardless, I have the absolute best primary care physician anyone could want....I mean it, the best. And I sent him some questions about nothing super important...and when I didn't hear from him for three days I sort of sent him a miserable email....

I didn't hear from him because he was gone...and instead of being rotten to me he apologized for not getting back to me quicker....

I wish someone would beat me with Rotten Stick...I deserve it. I have apologized to him for sure...but I dunno how to make it up to him...I don't deserve a primary doctor as good as he is....I wish I had a Hematologist even half as good....

Scott US/Maine

Worst Human Being Ever Born

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Oh Scott, please forgive yourself, you are exactly that, a HUMAN being. We all do things we're not proud of sometimes and make wrong choices. He's a Dr, he'll understand how you feel.

Peggy

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Peggy

That is what makes it so bad...he DOES understand....always :)))

Scott US/Maine

Looking for sanity

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Scott - We all do our best in life. You have apologized. If the apology did not include the reason for your mistrust of doctors and the reason for your anger, I would explain that the next time you see him or communicate with him.

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pkenn,

The worst part is my doctor KNOWS about 20 years ago...and he DOES understand. He knows exactly how I feel and has done EVERYTHING to make me feel safe and listened to and cared for in his office....

That is why I feel so rotten...my doctor has done nothing but help me.

Scott US/Maine

Still pretty rotten over here

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As an engineer, the first thing I learnt was the man who never made a mistake, never made anything ...

... you know you made a mistake, you apologized ... he was good enough to consider your point and he apologised ... sounds like a pretty reasonable outcome from an error made in haste.

As for sending miserable e-mails ... do what I do ... I save those for 'officialdom' , especially politicians ... The worst human beings are those politicians who will vote for anything ( as long as it doesn't affect them in a bad way ).

I'm waiting for a reply from one as I speak ... but they are not all bad ... the one before that asked if he could use my advice on his social media.

ygtgo ... the kingmaker !

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Ummm, I wanna be a King...can you start the whole making Scott a King process please :)))

Scott, US/Maine

Thinking about Crowns

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Congratulations on being human, and having the courage to admit it. The first step to moving on is to forgive yourself, just as you have forgiven your doctor. You can do this.

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Further to the other helpful responses, you mention that you "carry some baggage from what doctors did to my wife 20 years ago...my wife calls it PTSD." Perhaps you and/or your wife may benefit from sharing how this impacted you in the HealthUnlocked Heal My PTSD community: healthunlocked.com/healmyptsd

Neil

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Aussie, I honestly do not know if it could be healed.

Scott

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Possibly that is so - But, if you won't forgive then you are allowing the past to hold you and your future in bondage. Do you really want to allow past events to continue to have that kind of hold on you? It's not as if it can be undone

I'm not pretending that it's easy. Forgiving doesn't mean forgetting or suggesting that what happened was right. It means choosing to step beyond that and looking at now and what you want for your future and that of those around you.

I wish you well for the future.

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Don't beat yourself up to badly. Yesterday I managed to do a rotten deed. I feel horrible and can't take it back and the person that I offended most likely will not accept my apology anytime soon. While driving home from work today I had to forgive myself and just feel embarrassed for my behavior. Let's make a deal...Let go and let God!

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Pilantd

I like to think of myself as a person who always chooses love over hate and tolerance over intolerance....except when I am in medical crazyland I don't think straight and it is exactly as you say....I am so embarrassed because of my actions...

Scott US/Maine

So Embarrassed

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I've sent a few miserable emails in my life... and regretted them. Now I write them.. and don't send them. It saves me from myself!

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Lol! I write midnight letters getting all of my anger etc out, then rewrite them in the morning when I am feeling more rational. I have a wonderful friend who is very good at proofing them and taking out that last little twist of the knife. I learned a long time ago to walk away when I'm feeling out of control and to deal with those situations when I can do so more rationally. Otherwise I just make a fool of myself.

There are a couple of idiot doctors I would like to run into some day. It's been long enough that I think I could be calm, cool, and at the same pretty cutting, which they deserve.

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Mr.Midnight,

Yeah, I usually do that....I am really good at dealing with regular crazy....medical crazy I am not so hot at thinking right....and I let anger, frustration, and the need to lash out get the better of me...

I have to work on not letting that happen with medical crazy I think.

Scott US/Maine

Suffering from Medical Crazy

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Hi Scott nice to hear from you. As a retired psychologist I worked in primary care with GP's for the last 15 years of my career. I only mention this as I hope my experience will help you stop punishing yourself unduly which is what you are doing. Gp's are used to dealing with people's distress of whatever nature, it is part of the job description. Your GP will understand what is going on for you better than anyone else as he knows your history and presumably your wife's if she is with the same practice? We all let if steam in this way from time to time especially under pressure. I know I do. Those who care for us understand and your GP is one of your community carers. Can I ask was the apology face to face? If not maybe a face to face apology would help relieve the guilt you are experiencing which has led to your post? As a psychologist I was also used to dealing with aftermath of Post Traumatic Stress PTSD as you said your wife calls it, on individuals and families. Aussie Neil has suggested you visit the health unlock PTSD website. I have not been on this site myself but if it is half as good as the CLL website you are on I am sure this might help. Sounds like you and your wife have a lot to deal with at the moment no wonder you are letting off steam. As others have said before me you are only human so your behaviour may be out of characters for you but understandable. I rarely mention my professional background as I am now retired and no longer practice so this is given to you as a fellow CLL'r not in any professional capacity and only because I hope it helps you. I assume either you or your wife have CLL as you are posting on the CLL website? If this is the case you need to keep your stress levels to a minimum so please let this go or see you G P.I am sure he would be unhappy to think you are feeling so guilty about this. Good luck to both you and your wife whatever you are experiencing now or in the future.

Kind regards

Ann

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Ann,

I have the CLL. Both my wife and I avoided doctors for almost 12 years after what happened to her. I got Bells Palsy last March...thought it was a stroke for peeeets sake...ended up in ER. Not serious. My sister suggested I get the Bells Palsy followed up on and suggested the doctor....and so when I told him I hadn't even seen a doctor in more than a decade, well he was pretty thorough and I knew I was screwed a month later when HE called (not nurse or assistant) with "Oddities in the Blood Work".

But, I guess I am strange....I never felt Leukemia was "unfair" or "why me" I just see it as a fact, crappy fact...like a shark bit my arm off...no amount of boo hoooing or worry will get me a new arm. Same with Leukemia...no amount of boo hooing or worry will get rid of it. Problem for another day, really.

On the other hand, the fatigue I experience since the Bell's Palsy is like my stump bleeding...that is a problem for today, right now. And my primary has done everything he can to help....but he is not a Hematologist....and I am stuck in Maine...there are no CLL specialists. I see my hematologist on the 11th and I know there is going to be a confrontation....she will tell me the fatigue is all in my head but I read all about the BCR, BTK, JAK2, and STAT genes and Cytokines and Chemokines....it is NOT in my head...it is real. In fact, they have reclassified "Chronic Fatigue Syndrome" as an auto immune disorder because of the overproduction of cytokines...imagine how many patients were told to "take a walk" who complained of fatigue...like telling a person with a broken arm to go lift weights to help....piss poor advise and idiots not taking the patient serious....

But my primary has NEVER once done anything like that...he always listens and helps me.

Link to recent article on fatigue and cytokines...the chemistry of this stuff is so far beyond me...but I read it anyway...

nytimes.com/2017/11/27/well...

Scott

Dreading the 11th

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Hi Scott it is unjust to say the least to be told things are in our head when they are real and are actually due to a medical condition. I have come across some people in my working life experiencing the chronic fatigue in the head problem followed by extreme exercise regimes which makes matters worse. It can be so damaging. You have clearly not taken the position of negativity with your CLL and a rightly offended when the medical profession get it wrong. Your condition CLL and fatigue are real and in today's world people are hopefully aware of this which brings some vindication but does not heal the injustice of not being believed in the first instance. As a psychologist dealing with people both physical and mental health problems I have worked with chronic fatigue and chronic pain. The injustice and need to have their condition acknowledged as real is often their priority, as it would be mine, had I experienced this injustice. It is reassuring to know you have a warm and empathic GP who does take you seriously at least you can rely upon him therefore even more important you visit him face to face so he can reassure you the relationship remains the same and was not damaged by the resent events you described in your original post.

Take care

Ann

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The funny thing is at the same time my wife had her nightmare I had a sky diving accident (sounds way worse than what really happened) but required 4 surgeries on my back, 2 major...and I had a great doctor...I figured all were like him. But I have had a couple good doctor friends and know a couple things...Doctors are screwed by everyone, patients, government, insurance, big pharma....and I also know I am the WORST kind of patient...I just want to stroll in get a pill and be better...if one pill sort of works, two should work great....but I understand that is not correct thinking and work very hard not to be that person anymore. I learned 20 years ago I am not the person to be 100% in charge of my medical plan...I LIKE my primary in charge...I follow the rules we set out...and it works so much easier that way. On the other hand, I watched a world class (top ten) neurosurgeon completely screw up a minor problem my wife had...one quick surgery turned into 5 surgeries over 3 years because he was sloppy and careless....and they ALWAYS ignored her, ALWAYS told her to take a walk....we call it being medically stupid (which we were) and being medically stupid is extremely dangerous. The results of that were nothing short of catastrophic to our lives.

Scott USA/Maine

Not Medically Stupid, But Wishes That could be possible

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Oh, and to answer, I will absolutely apologize to him directly when I see him Monday.....it won't be the first time.

Scott US/Maine

Facing the Music Monday

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You’re not a rotten human being Scott...you’re a wronged one still carrying unbearable anger and bitterness at what happened to your wife. That anger is spilling out and causing you to lash out. Your excellent doctor understands that and won’t judge you for your words because he knows they are coming from a very hurt place.

Find a way to make some peace with that enduring bitterness Scott and don’t let it continue to consume you. This quote from Joanna Weaver kind of sums it up for me. I’ve had to make peace with terrible wrongs too. We all do it to preserve our sanity.

‘Bitterness is like drinking poison and waiting for the other person to die.’

Best wishes,

Newdawn

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I absolutely LOVE that quote....

Scott US/Maine

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That quote is so true Newdawn. When you forgive someone you heal yourself.

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One of my favorite quotes as well.

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Lovely quote Newdawn. 👍👍👍

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I dont want to take unfair advantage of your professional past, but could the situation of dealing with CLL cause us to be more sensitive to real or perceived slights because of the conscious or unconscious thought of being helpless, victimized, frustrated. Etc?... Thus anger is more easily provoked? I speak for myself ONLY that I am perhaps more easily inflamed than before diagnosis. Would others on this site agree?

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I can't speak for anyone else but since I was 8 years old I had to hide who I was. I was already reading adult novels by then and when skool gave me a dick and jane book it took me 5 minutes to read....I would get dragged to the principals office and accused of lying about reading dick and jane so fast....when I could answer the questions about dick and jane I was accused of being a bigger liar as I must of read it before.

When I was told Leukemia I decided I don't care if I am different and it makes people react oddly. I only need my wife of 24 years to like and love me :))

So yes, I am different but I think I am more tolerant (except medical crazy, I am not at all).

The funny thing I find about all this....we ALL have an expiration date stamped on us....us with CLL are maybe just a little more visible than others but that date could still be tomorrow or in 20 years...so really nothing much has changed has it??

Scott USA/Maine

Considering how weird life if

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The expiration date comment is somehow comforting...not sure why!

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Because it is true...I could be run over tomorrow by a truck....I say it is all in the "Who Knows When" cause it is :)))

Scott

Not Worried about Who Knows When

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Not sure about the expiration date thing. It seems so predestinational. I sorta like Prometheus, and heroes that fight the gods.

I've seen relatives give up and die, and it certainly feels to me like dying before they are due. Depression during illness is a killer. It overlaps so much with fatigue in its symptoms, it goes undetected. Doctors seem to just accept it, "Oh, that happens in most patients with xxx disease."

One thing I try to remember at age 62 - I'm nearing the end of life anyway, especially when I look at my ancestors life spans. So I'm looking for quality of life. The fatigue is debilitating and a quality reduction, and blindness in one eye is such a quality reduction, too. Tinnitus is a diabolical quality reduction.

Even so, I still listen to birds and music. I close my bad eye. I try to smell the earth after a rain (if I'm not too stuffy).

One thing that lifts me is looking at babies - newborns, especially, but toddlers exploring, too. It may not be a coincidence that both really young and old have weak immune systems. There's different reasons, of course. But I find meaning it - an extended dose of synchronicity perhaps. Circle of Life.

en.wikipedia.org/wiki/Synch...

=seymour=

on an extended mystical binge today

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I am absolutely not saying "predestined" just the fact.....we are ALL going out the same door. Maybe not our grand kids...but us, yep...same door. Might be tomorrow, might be 25 years...might be Leukemia, might be run over...might be laughing to death (I hope) but it is fact. No use getting upset about what I can not change.

Scott

Not opening any doors today

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I think we live more on the edge than others who may be blissfully living their happy, healthy lives. We have to be ever vigilant about our health and environment, it's never far from our mind, colours every decision we make and perhaps we have less reserve available, leading to those feelings you describe.

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On the whole I don't worry about my health, but I think you might be spot on I have less reserve available...and for sure when I feel like I am being ground up in the medical mill....

Scott

Why am I in a Pepper Mill???

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To join with your fellow pepper corns to find their One Miller who lets us pass and fall onto the ground to be kicked into fertile soil, and sprout anew ...

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Well said. I believe that.

Scott

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Scottxxoo -

I, too, have an over active guilt gland that serves me well sometimes, because I get so grumpy when I'm tired AND in pain, and I've had some bad doctor experiences. Plus, I've worked at a hospital for a decade, and know the character of some doctors does descend below regular decency, while others are truly the ones I hope the angels and aliens meet and base their judgments of humanity on before hitting the destruct button.

I've also yelled at my wife's gastroenterologist for wanting to do an unnecessary procedure while she was having a gall stone attack, which she informed me is more painful than giving birth. I've had 2 such attacks myself now, so I guess I am father of 2 humans, and 2 sets of gallstones. ;^)

Like you, I do regret and apologize. Like you, my PCP has been carefully chosen because of the connection between his ears, brain, and heart. I do not do well with other doctors. I haven't yelled at my PCP yet, but I've moaned, and even cried - I'm comfortable doing that with him.

The most bewildering thing about CLL is that there are so many side issues - are they connected to the CLL, or just coincidental? Along with pain, the fatigue lowers my consciousness level, and makes me more anxious and depressed.

I've noticed that when things go wrong, it happens in clusters for me. I got a head cold, and then my dentist said it's time to put a cap on a tooth that tends to get infected, and then my gall bladder got upset, and then my bad knee started hurting a lot more. My left ear has been blocked for a month now, but the doctors see nothing unusual when they peek at it. I then yelled at a nurse who didn't deserve it, but then she got me an appointment with my PCP the very next day (usually it's a 1 month wait). It sorta encourages the yelling, I'm sorry to say. All these individual specialists cannot cope at all with someone who presents with more than 3 painful things from 3 different specialties.

I'm in a swirl of specialist doctor appointments trying to decide which to do first, and of course there's the U.S. insurance complex to deal with. This all tends to happen in November for me. I think multiple organs track my insurance deductibles (there must be receptors and a Cluster of Differentiation en.wikipedia.org/wiki/Clust... for insurance. We should compare U.S. proteins with U.K.). My cells then demand service because I stoically tend to put things off. Maybe my stoicism gland is overactive, too.

So, I too am thinking it's the cytokines, chemokines, and where's that damn at home cytokine test I've been dreaming about?

And then I remember that some of this is short distance signalling that you just can't sample with blood, and need nanobots, and where are they after all these years?

en.wikipedia.org/wiki/Parac...

It's easy to climb into my cerebral cortex to suppress that constant limbic, thalamic noise. There's beauty in theory.

Anyhow, man, you sound like a great guy. If they look close enough at your blood, they'll find the Semper Fi Cluster of Differentiation highly expressed.

Thanks for bringing this up and giving me an excuse to dump my load, too.

=seymour=

Living the USCG slogan "You have to go out, but you don't have to come back" maybe a tad too much sometimes.

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It is like you read my mind..and I REALLY want to know where are the flying cars we were all promised 4 decades ago? I so still waiting on that....I hold a commercial pilot's license...but they don't give medicals to people with Leukemia...so I really want my flying car!!!!

Scott USA/Maine

Wondering where my flying car is :)

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All we get is Virtual Reality and drones. No G force sensation.

Elon Musk says he's going to send a Tesla Roadster to Mars on Falcon Heavy:

spaceflightnow.com/2017/12/...

which is also not quite what I wanted for a flying car or Mars.

I've been thinking of getting a motorcycle (bucket list), but my left eye is scarred from shingles, and my left ear (currently blocked) auditory nerve gets pressured and causes vertigo. So maybe it's not a good time for another bike for my midlife crisis, either.

I think if I am forced onto prednisone for anything, I may try to borrow a bike until the drug wears off. I'm thinking a 1970s BMW boxer twin would do, but I'll take what I can get.

=seymour=

Undaunted in New Orleans, though my biome now rejects most of the local cuisine. Looking for a pill with bacteria that displace those that ferment onions and bell peppers.

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God, I been thinking next year I am going to go find a Honda CBR1000, I had two of them when I was young, good looking and crazy....man I loved those bikes....bought my first in '87 then my second in '94 I think....best motorcycle ever....and it is not a midlife crisis, it is a fond remembering of the past :)))

motorcyclespecs.co.za/model...

Scott

So want to hit 100mph on a motorcycle again

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I have a Honda Fireblade!

You're so right, there is nothing like the feeling of complete freedom and being fast on a motorbike.

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Better lock that baby up....I might you know...borrow it :)))

Scott

Not stealing anything, just borrowing for....ever

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I wanna ride to Wyoming. I'll settle for U.S. highways and the Natchez Trace Parkway, and Indian mounds in the Mississippi Delta, and maybe Muscle Shoals, Alabama to see the famous sound studio, and then maybe Marshall Spaceflight Center in Huntsville.

When I rode back in the 70s, I was often crazy fast - hours at 120 mph on Interstate 95 on the way to USCG training in New York.

Later, on weekend liberties, I slowed down a bit on the Taconic Parkway in New York and Merritt Parkway in Connecticut. Autumn in New England is spectacular compared to Louisiana.

I sold the bike, a BMW R90/6, in 1976 in Marshfield, Massachusetts, because I couldn't ride it to USCG Radio Station NMF in the snow. Self-abnegation and duty are a theme.

I still like autumn drives. In the 80s. I drove down the Blue Ridge parkway in autumn listening to Janáček's Sinfonietta and Bartok's Concerto for Orchestra by the Chicago Symphony (best brass section ever, maybe), and Mike Oldfield's Hergest Ridge and Ommadawn - peak experiences. I could pull over at the lookout stops, and as Paul Simon once said,

"experience a period of grace, when your brain takes a seat behind your face, and the wold begins the elephant dance"

paulsimon.com/track/think-t...

Sadly, long drives are mostly now for hurricane evacuations. We do family reunions to state parks in Arkansas and Oklahoma, but time off from work is hard to come by, so it's a pressure drive. Gawd, I want to retire so bad.

My job lets me telecommute, so I can have a nap every day. I'll do that as long as I can.

I'm secretly afraid that retirement will signal my cells into pathological reactions of all sorts, simultaneously. I have a pet theory that some types of stress followed by relaxation cause a whiplash in the immune system. I've noticed that some people get shingles AFTER a spouse dies after a long illness. I get sicker in my favorite season, Autumn, after the long, hot, muggy, allergenic summer. But I got shingles in the Spring after hurricane Katrina - just as we were seeing what flowers survived the floods, and at the first party I went to.

=seymour=

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seymour,

The worst part I find is having to education hematologist when they should be educating me. I don't want to know all about the 13 chromosome (I read the genome mapping, 622 genes, half again as many "pseudo" genes", 13 Chromosome is an oddity in that it has half the gene population as other mapped genes but the genes are twice as long, 50K to 55K base pairs each...13 also has gene for being crazy, something called retinablastomia (which sounds so fun...not), breast cancer)...

I don't want to know these facts....but I read it...so they are mine.

And why does a potato have more chromosomes than humans (25 pair vs 23) and the biggest freak out....why do some butterflies have like 400 chromosomes....why does a butterfly need 10x the chromosome count as a human....sort of makes me think Zecharia Sitchin might of been on to something....

Scott USA/Maine

Wearing a Tin Foil Hat

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I sorta got over Ancient Astronauts with Erich von Däniken back in the 70s when I read how much he made up. Same with Carlos Castaneda, and Journey to Ixtlan on the inner path.

I joined CSICOP for awhile, but found it sterile and less fun. I then got into Jungian thought for a decade or so. Now I call myself a Mystical Realist. I see the possibilities, I see the realities, I find more of both all the time.

The details of genetics - all that junk DNA is actually a gold mine, and just because an elephant has multiple P53 genes doesn't mean they are all active, but it sure makes you wonder how that happened.

Evolution has no goal - it's a result. Even so, I still like Pierre Teilhard de Chardin. I dropped out of a Jesuit high school to join the counter culture, and then dropped out of them to join the Coast Guard. Did 4, and got a much better paying job as a computer field engineer. Can't stand unfixed things. So it's my fate to confront it in myself.

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I been working on computers for 36 years, since I was 14 and took apart a TRS-80 and writing C and C++ code....I hate doing it now. Tech is out of control...

Evolution has only one thing in it's bag of tricks....mistakes. I BELIEVE in evolution...but I don't believe that is all there is too it. Truth is, I don't believe much of what experts tell me....same with conspiracy theories...I love 'em, but there are no answers...just more questions....the tin foil hat wearers offering answers are just making crap up they like...unless I see a shapeshifting reptile alien overlord I don't believe.

Scott

Wishing Shapeshifting Alien Overlords were Here...it is so great a conspiracy theory :)))))

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I don't know that I need a conspiracy theory. Seems so anthropomorphic.

Quantum theory changes a lot of possibilities.

Eventually, most of the possibilities will be disproven, but it will get weirder as time goes on as other effects are noticed.

Are our mutations truly random? Or are they just connected to other events that we have no way of determining? Maybe my mutation is connected to a butterfly fart ... wait, do butterflies have digestive systems? Ok, maybe a termite fart in Africa. The duration and atomic orientation of the b-cell mitosis was identical in length to the duration and orientation of the fart through some inexplicable connection of causal events, as in the Butterfly Theory.

Sure, it lacks the juicy synchronistic meaning, but it may be a necessary negation of meaning to allow something else of equal importance to actually have meaning.

Hence, appreciate whatever good we get.

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quantum theory and quantum mechanics is so far beyond the human comprehension...but I have personally done the double slit experiment myself....I did not have a BHO crystal to tangle the photons (how to collapse the probability wave from what I read) but so astonishing.

I find it amazing everything you are, know, and see is made up of four things, up quark, down quark, electron and photon (EM Boson)...period, that is it...and they are all exactly the same...every electron, 100% identical....like Feynman said...could simply be the same electron moving back and forth through time (not an accepted theory but possible).

The standard model has lots more particles and a couple bosuns that effect us...but nope, those 4 tiny things...everything we know, are, see, think...all of it the rest like neutrinos...we don't even notice.

Except Gravity...but we can only count that with M-Theory...and no signs of that being correct yet...

Scott US/Maine

Made of 3 simple particles up&down quark and electron

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This will all be so simple to 8 year olds in another century or less ...

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it has taken me more than 8 years to understand just the basics!!1 Hahahaha and I bet you are right...8 year olds will think we were so stupid in a century how we could ever have believed what we did....

Scott USA/Maine

Thinking about what 100 years in the future will be like...hopefully better....more I love You, Less I hate You

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Yes, yes and absolutely yes Seymour!

Newdawn

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Hey Scott. This one is for you. A year ago I went to see a doc .His very first words out of his mouth(no kidding ..this is classic) "OH I AM SO GLAD THAT YOU HAVE THE GOOD CANCER!!" My exact words were "How would you like me to give you a "GOOD" kick in the "unmentionables" (word cleaned up for the benefit of the peanut gallery) , as opposed to just having me kick you in the throat??? Because to me,any doctor that uses the word GOOD before the word CANCER hasn't got a clue about what CLL does to patients!!" The bottom-line : I embarrassed the heck out of my wife. I wasn't really embarrassed because I truly felt that this doctor needed to permanently shelve his GOOD CANCER schtick. The doctor,I am sure is relieved that I found another doctor...LOL So I wouldn't kick yourself too much...but I am available to kick you apparently,if you need me. LOL

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I deserve a kick for treating my primary care doc like I did....but I am on my 3rd hematologist and looking for my 4th. I need to go to Boston and find a CLL specialist......

My wife got over being embarrassed by what I say to doctors when I finally told the neurosurgeon who screwed her so bad if he paid more attention to her head and not her (Rhymes with ITS) maybe she wouldn't need a 5th surgery...then he said how dare I speak to him like that and his wife was a doctor...so I replied yeah, but you took her shoes and left her in the kitchen....I thought my wife was gonna laugh to death....we took her to another hospital after that for her final surgery....

Scott

Trying to Get Over What Doctors Did to My Beautiful Wife

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I always think doctors telling us we have a good or the best cancer is rather akin to saying;

‘If you’re going to be run over and killed, you’ve got the best vehicle of choice!’

Newdawn

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NewDawn,

I agree with you...no such thing as "good" cancer...on the other hand I would rather be run over by a Lamborghini or Ferrari than Honda civic :)))

Scott

Looking both ways before crossing the street today

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Hi Scott correct me if I am wrong but I think what you are referring to in your reply to me is hypervigilence and insecurity when dealing with the medical profession which makes you react in ways you later regret. I don't know the full extent of what has happened but you or your wife and no longer practice. However, the information in your post suggests the traumatic medical experiences both you and your wife have experienced were initially responsible for this and the uncertainty of your CLL just compound matters all normal reactions even if extreme from time to time. Medical practitioners hold our lives in their hands. Your medical experiences have taught you that even the best are human and can get it wrong and some are insensitive and uncaring. So naturally you feel insecure. All normal. On the other hand you do have a caring and responsible primary care practitioner and I am glad to hear you are seeing him face to face soon. Don't just apologise tell him how you feel let him reassure you. I hope this helps to answer your question?

Let the community know the outcome you have generated s tremendous response and touched on experiences I am sure a lot of us are familiar with. I know I have both professionally and personally.

Regards

Ann

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I am not afraid of dying, I am afraid of doctors killing me.

Scott

Heebie Jeebied about People in White Coats

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I can relate to that one Scott they hold our life in their hands. My CLL has made me come to terms with my own mortality. Not an easy ride but one with a positive outcome. I too am no longer afraid of dying but I remain afraid of suffering in this life at the hands of doctors or any disease process. This is why I educate myself via this website and know a lot about my own health problems. If the doctors or any disease process gets me at least I can say I did all I can to prevent and protect myself. Beyond this we can do no more. May the hands of all of our doctors be safe ones and may they have the wisdom and compassion to understand and deal with us along the way. Take care all you CLLr's.

Kind regards

Ann

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Sciott -

That's a good part of it for me, too. I take it sorta personally. My beautiful mom was mangled by a surgeon because radical mastectomies were the rage in the 70s. It happened just as I became aware of femininity in its many forms.

A doctor kept telling me that the pain and itch I felt in my cast for a broken wrist was normal until he removed that packing, and saw the cotton grown into to the skin. I have a large scar.

But then, meeting doctors at work, and seeing their motivations. On the good side was the righteous anger of the surgeon who saw metastatic breast cancer in a relative of mine during heart surgery. She had been to the GYN, who made no note of it in her record. He had trouble closing her sternum because of it. He told the GYN off in front of us.

Her oncologist would not release her MRIs to a new oncologist because she had not personally signed the HIPAA form (another American thing about sharing medical records). She was bedridden at home. I found that her form allowed release to the hospital (where I worked), and got the hospital to release a copy to the new oncologist. If I had not been there, what would she have done to navigate the medical bureaucracy?

I have many more tales.

I know that these doctors are humans, and not demi-gods. We hold them in too much awe, and perhaps expect too much. They often take too much credit financially (at least in the U.S) and emotionally for outcomes. We project Jesus or Aesculapius on them.

We used to joke at the hospital "These hands have been touched by God, but the brain and heart was touched by something else."

I do see that I have a savior complex. I realize the negative aspects at first externally in doctors, and later in myself, as I find I must let go of some things, or have mistreated someone else. I was never a rescue swimmer or a small boat guy in the Coast Guard. But I don't give up on people or machines easily when I'm on a mission. I probably neglect to get on a mission sometimes, though.

Someday, I'll learn to just leave the doctor's office without much emotion when I or a loved one is mistreated, and abandon the idea they need a piece of my mind and tongue. I'm working on it. I don't talk like a sailor to them.

=seymour=

the most cathartic thread ever

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Hi New York. The uncertainty which comes with CLL certainly makes us vulnerable and can often make us feel helpless as we do not know the path it may take or the outcome of our own fate. But we don't know this anyway. As someone said earlier we could be knocked down by a car or fate may have other plans for us and we are not in control of this. The reality is we only have the moment we live in and no more. We plan ahead for the future as we must given we might be here tomorrow. But we might not and we can't control this. So our minds don't dwell on our mortality until lives gives us a reminder e.g. CLL diagnosis or other fearful health conditions or life events. In my case my CLL has made me much more aware of this. As have other traumatic life events. I value each day more since my diagnosis and I try to practice. Mindfulness and live In the moment. I make it sound easy but it is not. Mindfulness is all about living in the moment. There are courses you can attend or books you can read if you are interested. I have done the reading and the training which make sense and sounds easy but it is not believe me. Well worth a try if you are interested. My other way of coping and my main coping strategy is to take back control of my CLL by educating myself through this site, reading and asking my specialty for advice and information. It is your body, your life and your disease process. I find this and a positive attitude toward my chances of coping with my CLL work for me. Everyone is different so you might not want to go down the same path as me. I hope you find your way and your CLL path is manageable one.

Regards

Ann

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Dear Scott, all human beings are rotten, we were made that way! We don't mean to be but even the best of us get it wrong sometimes. I am often saying to myself "why did I have to say that?" or even worse "write that".

My haematologist even said recently to me that I am "scary". Now top that! That was because she came out to the waiting area and asked if I would see one of her colleagues instead. I said "No, I would like to see you please." Then she came out a second time and asked if I would see another of her colleagues and I repeated "No, I would like to see you please, even if I sit here all day!". Poor woman, and she is a good person too.

So join the rotten people club Scott. May be we could set up a special community for it.

Holly.

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Holly,

I think you are more right than I want to believe...but I don't like it. I think there should be way more "I love You" in the world instead of all the "I Hate You" that we have. When I find myself in the I hate you group I am ashamed. It has no place in thinking people...even animals don't hate....seems like it is all humans are good at sometimes....

Scott USA/Maine

Trying to Join the I Love You Club....but maybe don't qualify

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Glad you mentioned animals Scott. It is when I read in the media about how humans treat and abuse other humans around the world, and how animals are treated and abused around the world, that I rather despise the human race as a whole.

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I like to say I am not a big fan of the human race...it is a race we are losing.

Scott USA/Maine

Wondering why humans are so hateful? It doesn't have to be like this.

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Now I want to apologise to you because I have gone miles off your original post and do feel sorry you carry emotions that could border on PTSD. It is no joke really. In some ways I do too over how my Mother's life was ended in hospital through the use of morphine. It haunts me and always will. Holly.

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I think it is ALL part of my original post...probably I am not alone either...but I couldn't keep what I did inside me....I was wrong and wronged someone who didn't deserve it...because of what happened more than a decade ago....it is all so crazy sometimes.

Scott US/Maine

Maybe We Are All Crazy And Don't Know It?

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Mate, your reaction is way OTT - we've all done things we regret.

You have apologised - i'm sure the doc knows that patients are frequently stressed and not rational.

Get over it, and move on - but don't do it again!

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Scarlet,

Haha...the worst part....this is NOT the first time.....i is like the third time I have to say sorry to him....but probably the most rotten thing I did so far....

I have to get blood work today...I really do not like that whole thing...

Scott

Wearing Garlic, that might keep the vampires away today

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Well, having any sort of cancer is stressful and so the emotions are close to the surface. Try taking a few deep breaths and count to ten before you fire off any more comments!

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I just read this fabulous thread. So rich and real and funny and such good medicine- for me, at least.

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