Here’s the deal
 

I’m going to share something very personal. I’m sure some with less than stellar character will later use this against me. That’s on them.

I’ve been fighting hella depression for 25 years. With most of your neurotransmitters created in your gut, depression is just about guaranteed with Crohns Disease.

I also have leukemia. It’s a damn miracle I’ve lived this long.

This causes some issues with my brain chemistry. But not sadness. Mostly fatigue.

But knowing your life is fragile and that your family will out live you is, frankly, depressing. Hiding from viruses 365 days a year is stressful. Waking up in the hospital 2-5x a year is frightening.

My dad taught me that “you can only do your best. If you can go to bed at night and truthfully say you did your best, all is good.”

I do my best. I may come back at someone who is insensitive, cruel or derogatory but I’m never one who instigates. Most of the time I just let it go.

What I hope is that we can be kinder to each other. I’ve had several people say incredibly insensitive things about me dying and it gets old.

There is something really wrong with anyone blessed with a healthy and strong body and mind ripping on those less fortunate. It’s a low blow that should never be used.

If you don’t like something I say or post, try skipping the thread. Or put me on ignore.

But have some humility and some humanity. I don’t let any of these challenges stop me. I’ve been shot, broke my back and pelvis in a car accident, came hours within dying on several occasions (once while delivering medical aid - oh the irony), and through it all I have a “can do” attitude. Had surgeries, crazy infections, medial mistakes requiring more surgeries, I’ve ruined my wife’s life as she has become a caretaker and I’m losing my eyesight rapidly.

She is happy to do it but I see the wear and tear. She didn’t sign up for this.

I don’t say any of this for sympathy.

I request that anyone reading this take a moment to reflect on what you have. I know some here have health problems. You will only get support from me.

For those who are lucky to have stability financially, good mental and physical health I don’t expect you to understand. Just like I can’t understand what is like to be able to go places and do the things you want to do. I can’t comprehend feeling good. My fatigue is so extreme at times I can’t go up the stairs.

I only want to work to support my family. I ask for no handouts. Most of my time is spent helping other people (musicians for example - although I’m changing my mind there. Too many pussies who don’t want to work) - or doing free consulting for friends who need help but can’t afford my fees. Or bringing medical aid to disaster areas amd war zones - otherwise I’m working 50 hours a week.

I vent here occasionally like everyone. There is no one to talk to around me. I’m the breadwinner who can’t stay on my feet long enough to make progress. I have zero control over it.

It’s been 14 years of struggle. Yet, I’m not down and I’m not even unhappy. I’m just tired.

Part of me hopes I do get the virus. That will end my pain. If I didn’t have a family who means everything to me, I would have swallowed a .45 long ago.

I live with this every day. When you say hurtful things it may be fun for you, but it is harmful. And you never know what someone might be going through.

I’m also not a fan of oppressive governments and I understand what the prescription is.

You see, it doesn’t matter anymore to me. My days are numbered. Freedom is THE most important thing to me. If I die defending it, so be it. If people marginalize me because I fight, so be it. I’ll still fight for them.

This doesn’t mean I’m taking up arms. It means I am not going to be silenced by the mini-totalitarians that think I should just take it and keep my mouth shut. I will speak my mind. I will expose tyranny. Let the chips fall where they may.

I will always promote freedom and call out the powers that be when they tread on it. You can choose differently. I won’t degrade you if you choose the safe route. Some things are bigger than us.

Good luck out there.

I’m sure few will read.

:cert::cert:

I'm not reading all that.

Cliffs?

Pics of Shadow?

:USA: :USA: :USA:
This country was built on those very same principals.

:cert:

Here I will translate to Flex language.

Me, very sick.
It bummer.
I do best I can.
Be thankful for your health and strength
White man speak with forked tongue
Me not sad
me not coward
You big muscles
I like poon

Wishing and praying for the best for you Snik :toast:

Jeff

Only one on the iPad

...

But this is a nice shot too.

Pete, I know you've had more than your fair share of life challenges over the last few years. I too have almost croaked a few times the past few years.

I'm sure you're doing this already, but thank your wife for everything she does for you. Since October, my wife has been playing nurse everyday, and I thank her everyday.

Doesn't matter if we're sick, healthy, rich, poor, whatever, any minute could be our last. Life is too damn short to be dicks on internet forums. Yes, I've been a dick to a few people on this board, and over there. Some deserved it, some didn't.

At the end of the day, we're all here, on this board, to have some fun, and communicate with "friends". I've met some of the folks here in person, and I've always enjoyed meeting everyone I have met. Hopefully one day, I'll get to meet more people on here, including Pete.

And Nox.

:cheers:

Thanks for that.

I'm not a fukken retard I'm a professional accountant.

I'm just not reading the book of your life. :seasix:

PS: I hope you make it through this safely. As I do EVERYONE.

Thanks. Perhaps some folk need to be reminded that we are here to have fun and support each other.

I don’t hold grudges. Memory not good enough. I know you’ve been through it too. Are you better?

Mine never ends. It’s a lifelong thing. Give that a thought. I’m actually feeling quite strong right now. Note creative than ever.

And I will do my radio show. I will be playing this Friday live. (Good lord!) on line with video, audio via radio.

Maybe some other players will join me. Maybe not. Don’t care. I might start giving lessons via Internet. But my gut says focus on cost reduction and coming out strong on the other side. I’m basically paying NOTHING except health insurance.

I actually feel blessed. But I often think death would be so much easier. The only thing that stops me is the pain I would cause to my family. I will endure everything for them.

:cert:

Ha! I know. Just a joke man mountain.

You've got more of us in your corner than you think, Pete.:yesnod:

I don't think anyone wishes you ill Pete. You say things kinda f'd up sometimes. Thank your wife. Take care of you and your family while you can, and live man. You do not have to like the rules or anything else. Best of luck to you, and keep on trying. It is all any of us can do. Be well sir.:cert:

Meh. That was fairly simple. Now do a really difficult translation.....translate from English to Mrvette.

:waiting:

I know beauty is in the eye's of the beholder but Damn, your wife's a dog. :yesnod:

Loki and Nukka say hi.

I know but I have to question the character of anyone who would use a disability against someone. I expect that from Chas and think anyone who does that is on the same level.

Woof. I understand it but can’t speak it. He is fun to talk to on the phone!

That reminds me of a story.

I was in NM in a sketchy part of town and stopped to get gas. My situational awareness training kicked in when I saw a very rough looking biker dude just hanging around. I kept an eye on him as I filled my tank.

My black Shepherd was sitting in the front pass seat with the window down. This guy starts walking towards me. I keep my eyes on him. Next thing I know he comes around the pump and says “your wife is a dog!” Then, he moves right in close AND PUTS HIS HAND ON MY SHOULDER!

I take a huge step back, give home the stink eye and place my hand on my gun under my cover shirt (he could not see the gun) Hanna starts growling. He knows I’m on to him and starts backtracking asking if she will attack. I replied “only if I tell her to.” (Lie)

Then in a command voice I tell him to step back from the vehicle as I move into a shooting stance putting the corner of the vehicle between him and me for cover (gun still holstered, still in orange).

Hanna decides she has had enough, leaps out of the truck and goes after the guy.

He hightails it out of there, jumps on his bike and splits. I call her back and she instantly responds and, get this, jumps back through the window into the truck - at least a four foot jump. She crashed pretty hard inside the truck. :rofl:

I failed the interview. It was the first time I went to orange. Later, I was proud that the training really worked. I formulated a plan in seconds. If I had seen a weapon or if he came at me, I would have shot him without hesitation. It was clear he was looking to rob me or do something untoward.

His grip on my shoulder told me everything I needed to know. My only mistake is not reacting sooner. He got too close. But he moved very fast.

Hanna is super sweet but when she is fired up, she looks like a black wolf. Dang scary. But all an act. She sensed something was wrong and the guy was a threat way before I did. It’s very unusual for her to growl.

Shadow on the other hand would have ass raped that guy and brought back his severed leg.

Ya gotta nice emotional support animal to help get you through when things get sucky.

Hang in there Butha..

Think Positive Thoughts...

Feel the Love....

Mankind, you, the Barn, and Humanity preservers and wins more than participation throphies.....

Keep on winning the battles, day in and day out, minute by minute if need be......

Pete, I’ve read what you posted lately, and there’s absolutely nothing wrong in what you said. Illness or not, depression or not. If you were at 100%, you would still be just as right.
I feel for you, my friend. I’m very lucky to be as healthy as I am. I can understand depression, and all the rest. People are people. Some are idiots or just insensitive and cruel. They are not worth, to quote an old boss of mine , “ the powder it would take to blow them to hell”. Keep up the fight, man, you are not alone. Every patriot is worth their weight in gold now. I must have blown past Bill Gates long ago. I for one, am in your corner.

..including us lurkers! :yesnod:

:cert: Pete - one wish I have is that your show hits the road and lands a date here in Nashville. Heck, even at the Ryman if we are wishing.

I have met a lot of the folks here in person but you are one of the few I have never had a chance to meet.

You stay focused on the goal and pray for strength to fight through this. I will do the same for you

Don't hope top get that virus, you have a family that enjoys your time more than any thing you can give them.

Pete,

I will not begin to understand your current state of mind or how your physical limitations affect your daily life.

What I can tell you, having seen it too many times to count in my line of work, is that none of us know our expiration dates. I have seen people that had been given a month to live, out live their children or spouse. YES, some days are filled with misery and pain, some of my most amazing patients have taught me, there is always an opportunity to find beauty, even in the shittiest of scenarios.

The Endeavor Games https://www.endeavorgames.com/ are held in my town every April, except this year for obvious reasons. My 1st year to volunteer on the medical staff, I was excited to help the athletes. However, I was who was brought to tears through the positive attitudes of those who had very little to be happy about, and without knowing I needed it, I was HELPED to have my perspective on life changed, forever.

https://cdn2.newsok.biz/cache/large9...d96ad24b25.jpg

https://bloximages.chicago2.vip.town...b7f7.image.jpg

I'll never forget the athlete(s) who had only one limb. They competed in track and watching them, not only exist, but to push through all the pain and odds against them, gave me an inspiration that was overwhelming.

Knowing your conditions, I understand that depression is part of the chemical shift of dopamine, serotonin and norepinephrine that occurs in your body, which is out of your control. So many things with chronic illness are out of our control and that is a "hard pill to swallow". I hope that you are able to find more things than not to be thankful and happy for. For one, you have a loving spouse, and that is something many with severe illness do NOT have. Watching people go through terrible illness alone is a truly heartbreaking thing.

I do not know you, your story, or the background on what is happening, but from one human to another, keep on keeping on and take the time to fight to see the rays of light that are present, even in the darkest of days. We all are dying, every last one of us is 1 day closer to dying, but what we do with each day we are blessed with is what truly matters. That IS something we have control over. :c3c7nic:

I go to the same cancer center every two weeks for either fluids or for chemo. For 14 years and counting. It has given me incredible perspective. There are so many people who can’t even function if they wanted to. I can function quite well most days. (I’ve never missed a show) but granted, I often show up to work in bad shape and this persistence has put me in the hospital more than once (but AFTER the show!)

Then there are the people who suddenly don’t show up to the cancer center.

The lady with stage four pancreatic cancer who became a good friend because she had an incredible attitude. I started helping her at home even holding her hair out of the way as she puked her guts out. (RIP Elizabeth :sadangel:)

You usually don’t go to a place like that for years on end. I see the entire population of the place change. You don’t know who made it out because they beat the cancer or if they didn’t. What you do know is they are there right now and need to be listened to and shown somebody cares.

I usually walk around dragging my IV pump to try to talk to anyone who wants to talk, until I go down (****ing IV benedryl). It’s become a thing. I also bring snacks and little juice cans. I’ve not once had anyone offer to come sit with me. I drive myself there and I drive back.

I’d like to bring Shadow but they won’t allow it. People would go nuts for him.

You nailed the chemistry. My blood disease complicates Crohns. So I’m much sicker than a typical Crohns patient because I can’t get enough 02 (my body decided at some point that red blood cells were the enemy. And my terminal illium and my muscles, and my joints, and my optic nerves.)

I don’t know my exact expiration date but there are lots of stats. With treatment and barring a crazy infection (even minor infections turn into life threatening events - one time half my face swelled up ala elephant man from an infection in my skin. Put me in the ICU for three days. Most people when they get cellulitis they just take antibiotics.) I should live almost as long as everyone else.

The difference that lowers the mortality age is the number of surgeries. Most Crohns patients go through about ten years (starting around age 50) of many surgeries. In the hospital they get infections and die. If they live through that time, they usually do very well with reduced symptoms.

I’m in that time. 4 surgeries in less than two years. I never know when I’m going to wake up in the ER and find out they are going to start cutting. Last time it was a six inch section of my gut they cut out and I was there for seven days.

I’m not afraid of dying. I’ve heard the old saw “we all are dying” - let me ask that you avoid that phrase. It minimizes what people are going through. Of course we are all going to die. Maybe a bus will hit you tomorrow. Maybe your heart will give out.

But most people won’t experience the protracted brutality of this disease leading to death. It’s ugly. Treatment (currently $250k a year) can stave it off but nobody scapes it. Hell, a side effect of the drugs is lymphoma! WTF.

Death isn’t what sucks. What sucks is callous people, stupid comments constantly (Aw c’mon we are all tired, come out with us!” Or “but you look normal!”

What sucks is not being able to do what I want to do. When I have a show my preparation starts two days before. I have to limit what I eat, get hydrated as much as I can, sleep most of the day of the show, don’t eat anything the day of and then I need about two days after to recover.

I’ll never see France or Italy or the pyramids. I don’t get vacations. I can’t travel anywhere anymore because I have to have access to treatment. I used to go into some rough places to deliver medical aid with military, no more. I can’t build a new deck (I’d really like to!)

100% of the energy I have goes to work. (Self employed consultant) and getting work. After work there is nothing left for family, hobbies, even practicing (I don’t practice anyway so....but I tried vocal lessons. Don’t have the energy to do the exercises every day.:yesnod:)

So if things get nuts, put me on the front lines. With enough amphetamines I can do anything. :dance::dance:

It's not uncommon that patients use that "phrase" to respond to bad news. Cannot count how many times patients have said that to me, even my own dying father. Guess it helps them to have that perspective of commonality and why they use the phrase. Acknowledging that in NO way implies we will suffer through the same battles.

I wish you well and try to keep your head up.

Constant pain and fatigue wear on you differently than the loss of limbs. Yes those athletes have shown great drive and stamina to overcome their physical limitations. But what do you do when you don't have the drive and stamina any more? When those things are broken it's a very different thing to just get up everyday.

Perhaps.

But if you have ever known anyone post amputation, they often deal with chronic pain. Not only from the phantom pains but also from pain of prosthetic fittings and pain of their joints having to use their bodies in new ways. There are also many paraplegics at the Paralympics as well that I had the pleasure of meeting. Emotional pain that goes along with the “loss” of a body part or loss of function, can also lead to severe depression.

Fatigue is often a side effect of the neuropathy and pain meds they are taking. As you well know the long list of side effects of pain meds.

Not trying to compare apples and oranges, was more of appreciating importance of perspective/state of mind and positivity.

Well said, Snic. If I have learned nothing in life it is that time with family is what counts.
And beautiful pup!

No ill wishes here , keep on rocking. :seasix:

Dude gets it. I’m 14 years in with pain 24/7 and I can’t take pain killers other than Tylenol. To be honest I don’t even notice it anymore.

But the fatigue is indescribable. Although I think 50% is in my head. Everything I do, plan, think of is through the lens of rationing my energy.

The other 50% is drugs, the disease, low oxygen levels and hella sleeping problems.

There is something called “spoon theory”. We use it to attempt to communicate what life is like running on fumes.

Imagine I give you 50 spoons. Everything you do in a day takes a spoon or more. Shower? Pay a spoon. Get dressed. Another spoon. Intense meeting. Ten spoons. Rush hour drive 15 spoons. Your goal is to get to the end of the day with at least one spoon.

You can borrow spoons from tomorrow but they can’t be replaced. In other words if I borrow 10 spoons today, I start tomorrow with only 40 spoons.

When you run out of spoons you wake up in the hospital.

Usually I don’t notice the pain. Except a couple months ago it got so bad I hit the ER. Took three shots of hydromorphone before I felt any relief. They scanned me and said, “you have Crohns [shrug]”

Scared me half to death. Never had so much pain even when I was shot. Worse. I’m hoping that doesn’t happen again. :kick:

I wore a metal and plastic brace for a year after I broke my back. That damn thing literally wore holes in my skin. I remember feeling very defeated because I had no choice but to get through it. I could not walk or stand without it.

I still have the scars. Who ever invented that should be kicked square in the ballsack.

Pete:
1- you are an inspiration to many here,
2- Your life is blessed in spite of your life,
3- Prayers sent for you,
4- Keep on keeping on.

I feel for you Pete, but I bet most of here in this forum have some issues going on. The best we can do is to manage them to the best of our ability and continue on with life. I hope you reconsider your outlook. Me, I have had my share:

1: Platelets - I had a blood platelet issue in 1985-86 where my platelet count would wobble up and down. Normal levels are 200,000 - 500,000. Mine would go from 100,000 then drop to 10,000. Critical levels are anything below 30,000. At one point, my level was 5,000. The docs were surprised I was not bleeding out of every orifice. So they suggested I have my spleen removed. It usually works for 80% of the patients, but for me it did not work. I finally got it under control by taking a male hormone. Now my level stays around 200,000.

2. In 1997 I suffered a blood clot in my left leg. Not going into details, but they determined that I have a protein C deficiency from birth or a gene defect. So now I'm on blood thinners for the rest of my life. I have to test myself once a week and report my results. I have to keep my level between 2.0 - 3.0. Normal is 1.0. I posted this before, but both of my legs are marked with red spots due to the clot. Not much I can do about it. It's a shame because I had sexy legs in my 20's. :D

3. Getting old - I'll be 65 in May of this year, and I can tell you that each additional year will add new challenges. Body aches, not as active as before, hell even having sex is impacted. In a nut shell, getting old sucks.

Pete, you're one of the strongest humans I know outside of my mother (has had idiopathic pulmonary fibrosis for 7+ years and still puts up with my dad). Rest assured all reasonable humans on this forum are in your corner.