Sunday, December 10, 2017

Some good news... kinda...

This was the week of many doctor's appointments.

Endocrinologist, endocrine oncologist, and advanced cancer care team (surgeon, radiologist, endocrine oncologist, and advanced cancer care specialist).

Only one of those appointments wasn't in Boston.

4 nodules, most likely cancerous, clustered together in Chris's neck. Largest is 2.20 cm by 1.92 cm. Appear fully encapsulated. Nodule in lung not suspected to be cancerous.

So... we're going back to the rock star surgeon. In Boston.

Then getting some form of radiation. In Boston.

All of the cancer care will be in Boston. They're used to treating zebras, and the Massachusetts General Hospital and Harvard Medical School want tissue samples of Chris's cancer because they're trying to develop Hurthle cell carcinoma cell lines. Because they don't have enough, and his seems to be... vigorous.

Great. Wonderful. One frickin problem.

That's in MA. We live in NH.

Our current plan would make us go through several hoops because it automatically denies all treatment outside of NH. Imagine delays. Lots and lots of delays.

There is ONE medical plan we can buy ourselves that will cover all of the providers in MA. It's the top of the line individual plan. It can only be bought direct. Not through the exchange. So no subsidies.

It's $1,869 a month.

The way we figure it is unless it costs $20K+ more over the year than a comparable plan with a similarly low deductible and out of pocket max, it's worth it. Because delays and not being able to work. But ouch...

Also, that much travel to and from Boston with a disabled cancer patient (immunocompromised and can't walk that far, public transit is a firm NO)... the vehicle difficulties need to be fixed. Like now.

He also needs a wheelchair for getting around the house (or the in-law apartment) by himself because radiation means I can't spend extended periods of time around him taking care of him. Oh, and we're gonna need to get another bed so I have somewhere to sleep, and the bed we're currently sleeping on is already broken...

And Christopher isn't home yet because we're still battling CPS...

And we need to make the deductible on the new plan and the out of pocket max pretty much immediately, because no more delays...

We're just frickin spent on every level, trying to do all of these things at once.

But yay, not dying of cancer? Treatment? Oh and the endocrinologist thinks he'll be able to get off of insulin soon so there's that... There is some good news and forward momentum.

We're just so goddamn broke and exhausted, paying the bills, making CPS happy, and doing all of this at once.

And it's not just me, this is what Chris wrote about it:

"Right now, I am on my knees... i just finished praying for help.... and now, Im begging for it...
The fact is folks... for everyone who has ever thought of helping us survive... or for those of you who have helped, or for those who might be able to now... we're in it over our heads at this point.
I made it a year working with this cancer, and all the other issues, but I haven't been able to work since my last hospitalization, when I nearly went into into a coma in july, and since then have paid more than $40,000 in out of pocket expenses... just to keep me alive.
Now, some 24 year old social justice crusading social worker has decided that my wife can't handle taking care of me, and our son.... and we desperately need your help to get him back.
He's safe with my aunt Helen for now, but she can't take care of him forever, and unless we pay their price and play their tune, the state is going to put my hyperactive speech delayed autistic son in the system... and that CAN'T happen.
I'm literally bed ridden... I have been on the verge of being rushed to the hospal for weeks... Honestly the only reason I am able to be at home at all is because Im on 24 hour oxygen... and with the spinal injuri... I'm basically useless... Honestly... I'm a burden right now.... and it's killing me.
My wife has had to take care of everything on her own since my spinal injury... and she was doing OK... not great, but ok... then I suddenly got far worse and have been unable to work since July... and she has been drowning.
Our friend Sarah Caito is temporarily living with us to help... in fact, she was on her way here to help us before this cps thing happened... and shes been great, and shes going to help as long as she can... in fact, she took an extended vacation frommwork to come help us, and when that wasnt enough, and they gave her trouble about the time, she actually quit her job, and is now living off her savings and back pay... to help us get pur son back...
... honestly, I cannot tell you how amazed and hu,bled Ic am, at all the people who care aboutnus, and are trying to help in every eay they can. Its... I have no words, except to say thank you.... I appreciate it.
...Sonwe have great help... what we need right now is money.
The CPS agent told us that cleaning cleaning and treating for mold wasn't enough, that we had to throw everything away, and rip up all the carpets. Then, a week later she came back and said that now.... though the boy has plenty of clean clothes, toys, furniture, bedding etc.. now, we have almost nothing left in the house... because she made us throw it all away.... and that she feels it's not a "proper and safe environment".
It cost us $3,000 so far to clean and treat all the floors, carpets, etc... and to throw everything away, and to do do all do all the other things asked of us... and we have have nothing left, in fact we have Andrew in in the hole.
We have now spent every bit of money we had, in trying to get the boy back.
At this point we have had to throw put something like $20,000 in household goods, furniture, clothing... literally anything that could remotely hold on to mold, mildew, or unpleasant odors... Several thousand pounds worth, in multiple large trailermloads... all gone, at the demand of some 25 year old idiot who has never had a child, but knows what's best for ours... because after all, the state says so...
We're now about $2,000 in the hole, and that's just on November. We need another $8,000 to pay the basic December bills, and meet CPSs ridiculous demands so we can get our son back.
... and pay my medical bills, and insurance premiums, and the prescriptions they are still refusing to cover.
In theory we are supposed to be reimbursed well over $20,000 in out of pocket expenses from from the insurance company... eventually, after they dispute afterllndndnd disallow everything several times... I honestly don't think we're going to see a dime.
A friend of ours owes us more more than enough money to pay for andll of this... and and she should have it to pay us back soon... but nowt soon enpugh. Not sure exactly when. May be mid december, may not be until January... and we can't survive that long.
On 7th, I'm due at Mass general for at consult with the special treatment advanced endocrine cancer care team there, to decide on the next phase of my treatment. My endocrine oncologist believes that most likely I will go through three courses of radiation, over six weeks, hopefully beginning the week adtdvancedfter the care team meeting... but on the first of the year, our deductible and max out of pocket all reset... so that's another I think $8,000 we adtdvancedfter go thing tod need, just so I thought can get my radiation.
Then there may still be more surgery afterward... we're not sure.
If it's spread to my lung... the imagery was uncertain, there there was there was a 5mm nodule in my lower left lung, but it may be from something else...
Honestly, if it's in my lung... unless they can act fast, its not good.mif there is any more delay, I'm probably not going to make it... at that point there's not much there's can do... but I need to go forward and plan on surviving because my wife and son need me...
... I hate doing this... but nothing else matters... I can't let my something be destroyed by the system because some 24 year old teacher can't tell the difference between a boy playing before he got on the buss and getting and little dirty, and abuse abuse and neglect...
Or for any reason and all...
I can't afford pride... or shame, or anything anything other than this...
If you can help me save our son.... I'm begging you.... please help.
If there's anything you might want to pay me to write, or design, or any services I can perform for you from bed... I'm up for you whatever I am capable of doing.
If someone someone needs someone needs an indentured info sec expert... or an experienced trainer and educator... anything and rent all... I will donit.
No matter what it takes... for my son, for my family... I will do do it...
My wife Melody Byrne can handle all the details if you have any help you can give. We have multiple donation and payment options, and are happy to work with you no matter what it takes. If If you can help, please message her directly, andll she will work with you to tomake to make it happen.
.... and now two that I've managed to write all this, I desperately need to collapse and pass out.
Thank you.... for everything..."

So that's where we are.

I've still got a GoFundMe going BUT it takes days to clear so if it is at all possible to use PayPal (chris@chrisbyrne,com) or Messenger Payments that is much faster.

Thanks all,

Mel

Wednesday, December 06, 2017

Sorry guys, went dark for a couple of days...

Sorry guys, I went dark for a couple of days. A couple of things happened within an hour of each other, and I desperately needed to get away and get break. Frankly, I had a nervous breakdown of sorts.

I'm not particularly all of the way back yet, but life couldn't wait.

So the CPS agent showed up unannounced on Friday, and she was displeased. Doesn't matter that I'm dealing with 2 people being sick now. Doesn't matter that I spent the entire week literally on hospital watch every hour or so for my husband. I am apparently full of excuses and soon the only option will be court.

I'm under extreme amounts of stress.

I went to tell my husband, he misunderstood the state I was in, and he handled it badly.

Something in me broke, and I had to go have a mini-vacation using a friend's hotel points for a couple of days because I just couldn't deal.

But I'm back.

Tomorrow we go to Boston to meet with the cancer care team and determine a treatment plan. This treatment plan will not only most likely require us changing insurance to the most expensive plan for next year (covers out of state, and NOT an exchange plan) but the gas, tolls, and vehicle maintenance will be massive.

Still working on getting Christopher home, and the CPS agent is becoming openly hostile, probably because I denied her entry the first visit.

I'm frankly hanging on by a thread. I actually did break for a couple of days.

So things are pretty damn bad here.

I know y'all need more detail but I just can't do it right now.

I've still got a GoFundMe going BUT it takes days to clear so if it is at all possible to use PayPal (chris@chrisbyrne,com) or Messenger Payments that is much faster, which would be good because I need to buy food. And gas. And get our son back. And get the insurance changed and pay for.

Thanks all,

Mel

Monday, November 27, 2017

Now we get CPS

Let's get right to the point here: the NH version of CPS is currently screwing us over between a meddling teacher and an overzealous agent.

Yeah, just when you thought things couldn't get *worse*.

What happened is: Christopher smelled. In part because sometimes he still wets the bed. In part because he doesn't watch where he's running at full tilt. Anyway, he ended up at school with dog poop on his pant leg.

Pants I'd literally just taken the tags off of by the way.

So the school counselor called DCYF (the NH CPS) and we got a home visit.

I wouldn't allow them in the home. From this they assumed I had something to hide. I did. It's not like I was exactly caught up. Plus I suffer from the hoarding variant of OCD (yes, that's what hoarding is, it's a compulsive disorder).

Well, I was given the option of them getting an emergency court order or sending Christopher to stay with his great-aunt while we cleaned up.

I lost count of how many times I felt like diving into the lake on the way home, and not coming back out. But that wouldn't have fixed things.

Fortunately helped had already been bought plane tickets before the meddling counselor had even placed a call.

So stuff was removed. Stuff was cleaned. Floors were cleared. Help was/is extremely helpful.

CPS agent came back for home inspection. And... she couldn't stand to be in some of the rooms.

Y'all remember the great sprinkler failure and flood? Some stuff still smells like mold.

So Christopher couldn't come home.

I once again had to actively stop myself from biting a bullet. I'm under an extreme amount of stress and... just... even I have a breaking point.

But I didn't do it.

It was recommended that we might remove the affected carpets. Tried to clean them several ways first. Then rip, rip, rip. Out go the carpets.

CPS agent came back Tuesday. Things were better, she said. Much progress! But Christopher is special needs and no way you can finish with him home, he requires too much supervision. And you've just thrown out half your house, so I worry that there won't be anything to come home to.

*deep breath* WE THREW OUT HALF THE HOUSE TO MAKE THE SMELL GO AWAY AND MAKE YOU HAPPY AND NOW WE DON'T HAVE ENOUGH STUFF?!?!?!?!?!?!?!

And Christopher still can't come home.

It's been 3 1/2 weeks.

I've been in hell.

Our account is $1700 overdrawn because I bought carpet treatment stuff, carpet removal stuff, dehumidifiers, filtration masks, oh and food.

PayPal is $115 overdrawn.

I'm exhausted, I'm worn down to a nub, I honestly don't know how I manage to function at all.

Oh, and this entire month Chris has been either close to hospitalization or close to death. Sometimes it was an hourly thing.

We didn't mention it because sometimes we need to maintain a front for our own sanity. It's just... everything is falling apart.

And now I need to finish the cleaning and restock the house so Christopher can come home.

Oh, have I mentioned I've been doing an OTC regimen trial for my OCD? On top of all of this? Yaknow, on top of cancer, CPS, exhaustion, and lack of funds? Yeah...

Oh and we still need to fix Big Green, and get the Avalanche back to her owner, and there's this tiny thing called winter, and medical bills, and keeping on top of insurance, and the insanely expensive low carb diet Chris needs to be on, and appointments in Boston coming up with the oncologist, and and and...

I honestly don't know how I even frickin got out of bed this morning, between worrying about Chris and Christopher being gone and my own exhaustion and the fact that I frequently forget to eat. And that yesterday I went to 4 hardware stores with the change at the bottom of my purse to get a replacement o-ring for the water heater circulator so I could have my first hot shower in weeks.

Just so... done. And January is coming up. And insurance resets in January.

Oh and I have court on Thursday for driving on a license I didn't know was suspended because I paid the ticket in question. But still, I have court.

I... just... can't.

We need furniture. We need food. I need to pay whatever fine the court is going to levy. We need to pay bills. We need to keep Chris alive. We need to get Christopher back.

Anything would help.

I've still got a GoFundMe going BUT it takes days to clear so if it is at all possible to use PayPal (chris@chrisbyrne,com) or Messenger Payments that is much faster, which would be good because I need to buy food. And gas. And heating oil. And get our son back.

Thanks all,

Mel

Monday, November 13, 2017

I'm completely and utterly done...

The hot water isn't recovering.

Normally not a big, but I really needed a shower this morning, because I haven't showered in 5 days and CPS will be doing a home inspection today.

Why? Because the school counselor decided the boy smelled.

Now, in case y'all have missed the several "I'm in over my head I can't do this by myself oh God oh God" posts lately... the house is/ was a disaster.

This is not surprising, given that we've spent the past 2 years with cancer spiraling out of control, Christopher's special needs increasing (and his intelligence and escape artist ways), and me desperately trying to hold on every way I can.

So the day I can't give Christopher a shower before school because the hot water hasn't recovered, that's when CPS gets called.

Also 2 days before help was due to arrive.

Actual help. Not "never showed up because dealing with cancer might cause PTSD". Not "got pregnant and married, oops". Not "help with a side of condescension and "you should just put forth a little more effort" while I am literally asleep on the floor in front of company". Not "help that promises to show up and even gets a damn puppy and doesn't come back for a month". Actual help.

Too fucking late. The train had derailed completely, and CPS is due for a home inspection today and I'm freaking out because not everything is done no matter that we've been working on it continuously and I've medicated myself to the gills. It's most likely not gonna be enough.

Then I got up to our account $1300 overdrawn because I needed to buy food and supplies and hotel rooms and pay bills...

"Got up" not "woke up" because I didn't sleep last night past a short nap...

And the fundraising isn't going well...

And I'm out of gas in the truck...

And my side project may be dying on the vine today due to lack of funds...

And Snicker-Snack killed a mouse in the master bedroom last night...

My vacuum keeps clogging...

Chris has pneumonia and may need hospitalized...

And I can't even get a damn hot shower, or call a plumber.

I'm just so done.

Anyone wondering when I'd hit the wall and stop being able to handle everything completely? This is it apparently.

Because I've done what I can, I've fought doctors and insurance companies and bills and entropy and sickness and school officials and CPS and tried to handle all of this myself and I just can't anymore. I'm literally falling apart at this point and I don't know what to do. Picking myself up and dusting myself off isn't working so hot right now.

Mel

Friday, November 03, 2017

So the oncologist called...

So the oncologist called...

On the afternoon of December 7th Chris is scheduled for a consult with the Advanced Endocrine Cancer Treatment Center in MGH. They meet once a month. It's an integrated team of an oncologist, endocrinologist, surgeon, and radiologist. They will decide the course of treatment.

It's likely they'll do targeted beam radiation for 3 weeks. We don't know if it will work. We don't know how Chris will tolerate anything that's planned for him.

So yeah...

In the meantime...

I need to get all of Chris's old records from the previous cancer to the endocrine oncologist AND get all of the imagery from the PET scan to the endocrine oncologist. Plus, we'd really like to see the images ourselves.

Sunday we have help flying in (yay help!) which is good because clearly I'm going to need to devote considerable time and footwork to getting this done.

Also, we don't have rent and the bills covered yet, but we're much closer.

So that's what's going on.

If you feel like helping, we still desperately need help.

I've got a new GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can. If you're interested in the investment part please email me at melody.byrne@gmail.com.

Thanks all,

Mel

Wednesday, November 01, 2017

Why I started a new GoFundMe

Some of you will have noticed I started a new, fresh GoFundMe.

There's two reasons for this.

One, the other had gotten incredibly cluttered and long-winded.

Two, I got some help.

Yes, me, Mrs Independent, asked for help to run the fundraising.

Why? Because I'm incredibly burnt out and my plate is extremely full of stuff that I need to be immediately available for and responsive to.

... that kind of makes writing long updates difficult.

I can't even watch a tv show without at least 5 different interruptions, let alone put words into text to send out to everyone.

So that's why.

I'm not happy that we've got at least a few more months of this to go. I'm not happy about not having a working vehicle that we own. I'm not thrilled with a lot of things.

Being broke and being worried about how to buy food and pay the bills has gotten extremely old.

I do have a side project going (I never stopped working at it) that will go public(ish) and pay out soon, but it's not there yet. (we're still looking for investors if anyone's interested, email me at melody.byrne@gmail.com). I hate depending on the support of others so I've always been looking for a way to get above water that doesn't require Chris working.

But still I must ask, at least for one more month, so I can keep the Chrises housed, fed, and taken to medical treatment.

I've got a new GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can. If you're interested in the investment part please email me at melody.byrne@gmail.com.

Thanks all,

Mel

Sunday, October 29, 2017

I really hate the first of the month...

As fast as things are moving, some things aren't moving fast enough.

Like getting Chris back to work... or my side project which has again been delayed.

So the good: Chris is seeing the endocrine oncologist at Mass General, and we're working out a treatment plan based on testing.

The bad: the oncologist is at this juncture wanting to do targeted radiation and maybe injected alcohol, which is a multi week treatment which we don't know how Chris will tolerate.

Did I mention I really need my side project to speed the hell up and pay me? Yeah...

So here we are again.

I need to pay rent, and other monthly bills (like insurance), as well as fix Big Green because I need to give the borrowed vehicle back to her owner. And prep for winter. And, and, and...

So here we are.

So I'm looking for 2 things: additional investors for my side project, and operating costs for the next month to keep a roof over our head, heat, and transportation.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can. If you're interested in the investment part please email me at melody.byrne@gmail.com.

Thanks all,

Mel

Monday, October 16, 2017

When things start moving, they really move...

Chris's endocrinologist called this afternoon. Chris is being referred back to the endocrine oncologist and rock star surgical team at MGH.

Not even a few hours have passed since the endo's office let me know they were sending along the referral and the oncologist's office is already calling trying to set up an appointment.

Bottom line is surgery and radiation will be happening in Boston and will apparently be happening quickly. This is a GOOD thing.

However, it's mid-October. We've finally gotten the insurance company to recognize Chris has hit his personal out of pocket max (family is another deal entirely). There's only a month and half until things reset.

Then it's next year, and trust me, we're not going through the exchange next year, we're dealing directly. That will mean no subsidy, but we'll have the plan with the lowest deductible and out of pocket max that will actually cover all of New England instead of just NH.

... and it will be expensive as hell. Cheaping out turned out to be expensive as hell too. We'll go with the expensive as hell with faster treatment.

So surgery is coming up, as well as multiple trips back and forth to Boston, and whatever babysitting arrangements I need to make so that Christopher is taken care of during that time (including getting him on and off of the bus for preschool). This is going to expensive.

On top of that we still have to fix a vehicle oh and pay the bills, including the health insurance bill for November and December that I don't even know how it will be, because for some reason it changes month to month. Plus the whole roof and food thing. Plus we need to replace the hot tub because it's the only way Chris can currently bathe due to mobility issues, and oh the poor bed needs replaced, badly...

But things are moving. Finally!

Chris sees the endocrine oncologist on the 24th and hopefully, HOPEFULLY, we will get this ball fully rolling by the time the out of pocket max resets on New Year's.

In the meantime we need to stay afloat.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Monday, October 09, 2017

Cards on the table...

So I've been in the middle of a side project for a while now. Years in fact.

I haven't put much cash in, and where I have it's been as a float for an actual financial partner. So don't think donations have been going there, they haven't. I've been more the labor and emotional labor part of this equation. I'm getting a healthy portion based on that. It's not bragging to say this entire project would have died a long time ago if it weren't for me. It's also not overstating to say that successful completion would result in me not having to do any more goddamn fundraising for the rest of my life, at least not for my own family.

However, we're a few weeks out from completion, and the financial part has dried up. No one's fault. Things like that happen.

We're looking for a couple of investors for the next couple of months to finish up. You wouldn't be getting what I'm getting but you'd be getting a very healthy return on investment. I'm not willing to go into details as to how healthy in such a public forum. We're short on cash for this, and that's what we're looking for.

So if anyone is interested please drop me a line at melody.byrne@gmail.com to that effect or message me on Facebook. If we're not on a first name basis or it's not obvious who you are, please include the name or screenname I'd know you by.

Thanks all,

Mel

So the PET scan results came in today...

So the PET scan results came in today...

Here is Chris's explanation:

Ok... preliminary radiologists report and notes showed up on the patient portal this morning... I talked about it with my family first... now time to tell my friends here...
The results are... mixed... I guess is the best way of putting it.
It's nowhere near as bad as it could be... but it's not as good as we had hoped.
First, they confirmed the two large masses or clusters in my neck we already knew about... they're about 1x1 inch, and about 1x.5 inch... consistent with what we saw on the ultrasound.
There may also be a third mass in the same area, but its indistinct.
There may also be another mass on or next to my vocal cords, but it's also indistinct.... That may be what has been giving me the sore throats... it's probably something, but either it's occculted by the glottis and larynx, or it's small and early. That could mean vocal cord paralysis or even losing my voice permanently... or it could be nothing.
That's the good news...
The bad news, is that there is distant metastasis.
The worse news is that it's into my lungs.
...BUT...
There appears to only be one relatively small nodule thus far... appx 5mm in my lower right lung.
If we are INCREDIBLY lucky, it may be a lymph node, and not even be in the lung itself... it's unclear from the report, and I haven't seen the imagery yet.
So... that's bad... not quite VERY bad... but it's bad... any distant metastasis is bad, and distant metastasis into the lungs is just about as bad as it can get.
The best case, is if its just in a lower lymph node, or it's otherwise a self contained encapsulated nodule. If it is, then they only need to take the nodule and immediate surrounding tissue. We pray we are that lucky... but we're not counting on it.
Otherwise, if it's actually infiltrated the lungs... Well, that's not a good prognosis overall... but the nodule is estimated to only be 5mm or so in diameter, so it's small and most likely relatively early. We don't know how aggressive that malignancy is.
They may be able to just get the nodule and some surrounding tissue... or I may need a lobectomy of the lower right lung lobe... Once the lung tissue has been invaded, you have to remove a lot of it, to make sure you dont see additional metastasis or recurrence.
...But it's MUCH better than it could have been.
... Now, the most important thing, is we need to move quickly on the lung nodule. If it has actually invaded lung tissue, then it can spread INCREDIBLY quickly... a matter of weeks and it could be much more serious, or even potentially inoperable...
Also, a guy my size, any kind of lung operation is incredibly dangerous and difficult... I'm as likely to die on the table as from the cancer... and we may even have trouble finding a surgeon or an anesthesiolgist who will do the job.
... So yeah, we are happy it's not as bad as it could be... but it's still pretty bad... and it's now pretty urgent we get moving, in order to keep it from becoming as bad as it could be...
If I die of lung cancer having never smoked a day in my life, I'm going to be PISSED...

So not perfect, but not bad. Survivable.

In the meantime...

Got bills to pay. Hot tub to replace (it's the only way Chris can bathe currently, and while the portable one did us very well, it's both too small and dying), a mattress to replace (being bedridden for a full year is hard on mattresses), and life to deal with. As well as a vehicle to fix.

So yeah...

But fortunately we've got our light at the end of the tunnel, and that's no small thing.

We're going to look into Patreon for dealing with the long term costs here, though after I get some actual sleep.

So yeah, unfortunately still need help.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, Google Wallet to melody.byrne@gmail.com, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Thursday, October 05, 2017

PET scan today

Chris's full body PET scan in search of distant metastases is today. After almost a year of delays and insurance issues and everything going wrong, it's finally happening.

Pretty much we're going to find out how likely he is to die. But totally no stress. NO STRESS AT ALL.

I'm still trying to get the bills paid, rent in particular. I'm just a tiny bit distracted by today though.

So please, pray for us. Help us if you can, please.

If you find yourself moved to help, anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Monday, October 02, 2017

Monday Dumpster Fire

Meds to pick up that insurance won't pay for.

Bills to pay, including rent and health insurance.

Crises all around. The shootings in Las Vegas and knowing several people who had relatives in attendance. Friends with relatives attempting suicide. Friends with crimes committed against them.

Shaping up to be a great morning so far.

Would be better if I didn't have $1k in meds to go pick up, and if the damn out of pocket max would refresh, and if it wasn't the beginning of the month.

Well, when it rains it pours.

If you find yourself moved to help, anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Wednesday, September 27, 2017

You Gotta Have Faith

I'm sure y'all have noticed by now, but Chris and I are quite possibly two of the most stubborn and persevering people to have ever walked the earth.

A lot of the things we've pulled off that appear to be minor miracles are hardly miraculous. They're the product of sheer bull-headedness and an unwillingness to accept things as they are. Necessity may be the mother of invention, but being told "no" is often the mother of creative thinking.

The fact that we're both ODD as hell notwithstanding.

That being said... I'm giving up.

I can't stubborn and persevere my way to everything coming out well.

God knows I've tried. I've pulled enough situations out of a dumpster fire through sheer tenacity to know that sometimes pushing in the right spot at the right time in the right way turns everything around.

But it's killing me.

Yes, I'm so stubborn that I've surpassed my own ability to deal.

Here I am. I'm a mess. The house is a mess. I'm barely handling Christopher's education and needs. I'm barely managing the medical end of things, and starting to slip disastrously there. Plus who has time to work on their marriage when they're trying to keep everyone alive?

That's before I even go into the situations I'm not a primary player in that I'm keeping some influence over.

I give up.

While there are several concepts from my weird Protestant upbringing that need to go die in a fire and never return, there is one concept that I find I need to rely upon at this time.

Let go, and let God.

I'm stopping my attempts to control and influence so much, and handing that control and influence to God, so I don't end up failing even worse than I am now.

So the bills that are piling up? I need to have faith there.

The situations that are causing me stress? Maybe I need to back away and have faith.

I have accomplished more than it seems anyone but me and my husband have ever expected me to, to the point that I have an unearned reputation as someone who can do anything.

Well I can't. I need to back off. I need to stop overextending myself. I need to let the burden fall elsewhere.

There's meds to get. Monthly bills to pay. A vehicle to deal with. It will get managed. I need to have faith that it will get managed without me killing myself, that there will be help.

So I put it to God, the Holy Mother, the saints, and the universe: please help. I can't do it all myself, not anymore. Not without destroying myself.

I'm going to wrap this up as I always do for these posts. My husband still have cancer. We still have bills to pay and things to take care of. I just won't be killing myself trying to make it happen. I may take the rest of the day off from being reachable so I can stop spinning my wheels.

If you find yourself moved to help, anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook. I may not respond today, but I will catch up to everyone when I can.

Thanks all,

Mel

Monday, September 18, 2017

The Second Verse...

Happy 70th(ish) birthday to the United States Air Force!





I say "70th-ish" because though the USAF were officially chartered as a separate service by the National Security act of 1947, taking effect on September 18th; in fact we were founded... and claim all who served in these services and their successors... August 1st 1907, as the Airborne Scouts, Aeronautical section, United States Army Signal Corps. 

By USAF tradition, and in fact recognized federal regulation, all veterans of these services are considered veterans of the United States Air Force (the Army sometimes disputes this, sometimes does not... there are days, and men they like to claim... the sexy stuff... the rest we "zoomies" can take). 

As such, we are much shorter on tradition than the other services... and we have by far the worst uniforms, and the worst songs...

Most people are at least loosely familiar with the first verse of the Air Force Song...
"Off we go, into the wild blue yonder,
Climbing high, into the sun
Here they come, zooming to meet our thunder,
At'em boys, giv'em the gun!
Down we dive, spouting our flame from under
Off with one helluva roar!
We live in fame or go down in flame. Hey!
Nothing can stop the U.S. Air Force!"
... and I'll be honest, I... like, I think most Air Force vets... don't like that first verse. It plays into all the worst stereotypes about the Air Force... Nothing but zoomies, glory hounds etc...

... And sadly, the third verse... sort of... isn't much better either. (though it is often left out of most performances, reserved for internal Air Force functions, where the "toast to the host", is an official acknowledgement to the hosting unit commander), and the final verse is just generic closing platitudes...

Certainly the Air Force Song doesn't have the majesty or grace of the Marine Corps song... Which is even officially titled a bloody HYMN, and speaks of Marines guarding heaven itself...

... because of course it is... and does... because... Marines...

But the second verse is different... Most people have probably never even heard it, or noticed it if they did...
..."Minds of men fashioned a crate of thunder,
Sent it high into the blue!
Hands of men blasted the world a-sunder
How they lived God only knew!
Souls of men dreaming of skies to conquer
Gave us wings, ever to soar!
With scouts before And bombers galore,
Nothing can stop the U.S. Air Force!"...
...which is a damn shame, because honestly... though simple.. it's actually quite profound.

It speaks to the history and traditions of the Air Force all the way back to the pre WW1, Airborne Scouts, Aeronautical section, United States Army Signal Corps...Founded in 1907, just 4 years after the first successful controlled powered flight of an airplane, period.

... "Minds of men, fashioned a crate of thunder... Sent it high, into the blue"...

Further, It acknowledges the incredible danger, and shocking casualties the men of early aviation and air combat experienced...

... "Hands of men blasted the world a-sunder... How they lived God only knew!"...

And to the nobility of man, and his endeavours into the air, and beyond, even into space...

... "Souls of men dreaming of skies to conquer...Gave us wings, ever to soar!"...

The second verse speaks to the entire history of the Air Force, from those first scout flights in what were little more than box kites with motors on them...

...all the way through to the massed bomber raids of 1943 and '44... and those few days in August of 1945 when everything... everything in the entire world... changed, forever...

... and to what appeared to be the main future of the Air Force, on the day of its official creation as a separate service September 18th, 1947 (the original lyrics were written in 1938, but were updated in '47)...

...and it makes me proud to hear it, and to sing it.

Friday, September 15, 2017

This one will be short...

I picked the kiddo up from school today. From the nurse. He'd been vomiting.

He vomited in the driveway. He ate some. He vomited some more. Then he shared his flu with me and I started being sick.

So this update will necessarily be short.

Harvard Pilgrim did indeed reinstate our health insurance.

However, the claims that made it so we reached out of pocket max? Well, they were denied and sent back so... I'm still paying an arm and a leg.

At the writing of this the bank account is $800 in the hole, I've got $1k in meds to pick up (including my ADHD meds) and food to buy and gas to get and... you get the idea.

We'll be reimbursed for the meds. Eventually. Think months or quarters. The bills that made us reach out of pocket max have been sent to Harvard Pilgrim but that stuff takes time.

There is some good news. The PET scan we've had to put off is now scheduled for the 11th. Given the current situation we'll probably end up paying a bunch of that cost too (grrrr) but at least now we can make progress.

Now that I've written that I'm going to go crawl into bed and hope for a merciful end to my physical misery.

But at least we're getting somewhere.


Anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook.

Thanks all,

Mel

Wednesday, September 06, 2017

Some Progress At Least...

Let's start with the good news.

Insurance is paid (I sent in a check, the check hasn't cleared yet but the account will cover it). I managed to pay rent and heating oil (our hot water is heated by the furnace). Christopher started school today.

Now the bad.

I called Harvard Pilgrim today to find out if the insurance had been reinstated. It had not. There's a note in the file to reinstate it as soon as the payment arrives (it should have arrived yesterday, doesn't mean it was processed yesterday) so we've got that going for us. But it may not be reinstated until Friday or Monday.

... and I've got $1500 in meds I need to pick up today.

I'm extremely not happy about this.

There's also smaller bills I need to pay (internet, electric) but that doesn't bother me near as much as not being able to pick up insulin. For obvious reasons. The cable bill and electric bill have grace periods. Diabetes? Doesn't have one at all.

I also need to get gas, and food, and those sorts of non-essential things.

So that's what is going on. I need to pick up $1500 in meds I can't pay for. So Chris can keep doing this thing where he stays alive.

Anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook.

Thanks all,

Mel

Thursday, August 31, 2017

Yay for the NH Insurance Department and Oh Crap

So, the insurance situation is partially fixed. By partially I mean I've been given the opportunity to pay the balance and have the policy reinstated (therefore retroactively covering everything they've denied) as long as I do so before September 14th.

The balance? $2696.18.

I've got the voicemail linked up on my Facebook if anyone is interested.

But that's massive progress, especially since Chris's meds are $4k every month, and reinstating means recognizing we've already hit the out of pocket max. So we would be ahead.

Plus, with the insurance reinstated, we can get back to doing that pesky thing called ACTUALLY TREATING THE CANCER.

Important, that.

However, since this insurance issue prevented any actual cancer treatment from taking place, we still have no income. And all of September's bills to pay. And life-saving medications to pay for while the insurance is reinstated. Oh, and while our friend has kindly allowed us to keep borrowing her vehicle for another month, that's not going to last forever. And of course we're broke as hell because even paying the lowest cash price for meds, I spent $800 on meds and doctor's visits this week.

So, yeah...

Of course one of those doctor's visits was for our autistic, mostly non-verbal 4 year old Christopher, who starts at the school district's developmental pre-K next week. He'll be receiving speech and occupational therapy as part of the curriculum. Getting his supplies together wasn't cheap, but between donations and what I've bought for him, it's done.

Also, at the end of next week a plan we've been working on for over a year comes to fruition, and we receive 2 purebred Husky puppies from a friend's litter. They're to be trained by Jayne, our 10 year old current alpha dog (and by the human adults of course) to be companion dogs for Christopher. If we waited any longer Jayne would be too old to train them, plus we wouldn't be able to guarantee two littermates from a household with both a child and cats.

I just need to figure out how to get them from Rocky Mount, NC to as least as far north as Harrisburg or Philadelphia so I can pick them up. That's a different logistical issue.

So, to recap:

Christopher is starting pre-K.
I need to arrange to pick up his puppies.
Long term transportation needs to be arranged.
Chris can't work because he needs to get far enough in his cancer treatment that he can dependably be awake when he needs to work, and not have to cancel the classes he teaches.
We have no income.
We need to pay the bills, pay for meds, and pay for the back balance on the insurance (so we can get back to treatment).

But hey, we're finally getting somewhere! And thanks to the aid of the NH Insurance Department, Harvard Pilgrim will be reinstating our policy!

But that means we need to get through at least another month.

Anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com also works, or hit me up on Facebook.

Thanks all,

Mel

Wednesday, August 16, 2017

Insurance Update and ARGGGHHHH

So, a week and a half of trying to fix this insurance issue.

GRRRRRR.

I made real progress today though. I once again called Harvard Pilgrim. They once again denied responsibility and the ability to fix things. They sent me to the NH Exchange (which is part of the Healthcare Marketplace). Again. According to them that's the only thing they can do.

I call the NH Exchange. I talk to a nice young man who tells me that 1. They can't fix the problem but 2. Unlike before the policy is now cancelled on their end so they can "escalate", take a complaint (which he took down for me), and try to resolve the issue. That's honestly the most help I'd gotten so far.

Only problem? That will take at least 30 days.

I've got a husband with CANCER who has TESTS OUTSTANDING and THOUSANDS IN LIFE SAVING MEDICATIONS EVERY MONTH.

But that process is started, and that's something.

So I called the NH Insurance Department and got a hold of an actual human.

I told her the story (not notified about change in policy, online interface still shows old policy as "Active" with a balance of $0.00, they cancelled the policy for nonpayment on a policy I didn't know existed and told me it was my responsibility to call them and tell them to add a policy I didn't know existed to my online account, which they require me to pay through).

I didn't even get to the practical consequences of this screw up before she said "this isn't right. Make a formal complaint and we will do our best to fix this."

So that's where we are.

In the meantime Chris can't work, I can't work, we have expensive medications to pick up, and we still have to resolve our lack of vehicle.

So that's where we are, with Harvard Pilgrim blaming the Exchange and the ACA for their inability to fix the situation, and the Exchange blaming Harvard Pilgrim. While we try desperately to get coverage back and keep afloat while things get delayed. Again.

So unfortunately we need to ask for help. Anything would help.

I've changed from GoFundMe to Facebook Fundraising (which charges a third of GoFundMe's fee), PayPal to chris@chrisbyrne.com always works, and there's always pinging me on Facebook.

Thanks all,

Mel

Thursday, August 10, 2017

I thought I knew what difficult meant, now I know better

Warning: massive, slightly tipsy health and life update coming, combined with a rant, combined with a lot of other stuff.

Lessee, as I start this it's August 10th. That means the newest phase of our personal hell started 32 days ago, when my Blazer blew a head gasket.

That was a pretty good indicator of what was to come.

Chris cancelled his classes for that week, knowing he would need to go to the ER later that week. Which he did. I drove him there in an Avalanche borrowed from a friend. He almost didn't make it through the door. Frankly he didn't make it through the door under his own power, I found a nurse to get a wheelchair and wheel him into the ER, while I shepherded 4 year old Christopher and his safety harness.

See, back in June it was determined that Christopher is autistic and has a speech delay. The delay isn't just in his speech, but also in received speech (understanding others). So we're not talking a kid who will play quietly, or stay in one place, or be able to even tell new people his name. And he's an escape artist who is constantly plotting ways to go on his own adventures without adult intervention. Yeah, it's hard. Very hard.

So if you can imagine the three of us, Chris, Christopher, and me, sitting in the ER of the local hospital, with Chris looking like he was on death's door.

That's how this started.

We found out later Chris was a few days to a few hours from dying.

He ended up admitted for 5 days with a diabetic hypersmolar crisis. From undiagnosed diabetes. Stemming from his rhabdomyolysis caused by surgical complications from last September's surgery.

So our world got turned upside down. Again. You'd think we'd be used to this, but this is another level of complication.

On top of diagnosis of the hypersmolar crisis, a second previously unknown cancer tumor was found.

Yep, that's still a thing.

Fortunately the new endocrinologist (the last was fired, for not handling zebras well) who is the main reason I chose to take Chris to the local ER (this endo is known for actually listening to zebras) is treating the cancer seriously.

So Chris isn't working in order to be ready for any cancellations that pop up (his classes are scheduled in week increments ahead of time, and his students have to take time off of work to attend, so he can't just drop them at a moment's notice) and we've reworked a lot of life to deal with the diabetes. More medical equipment, an oxygen concentrator, a second air conditioning unit to deal with the humidity and climate control in the house, then meeting our out of pocket max, plus the normal bills and everything I had to do (take out, totally different food, fixing our lack of hot water) in order to survive handling everything myself and get things ready for him to get home...

We went through $28k last month doing all of the above. $28k.

We still haven't managed to get everyone back on a normal schedule.

But it gets better.

We had just met our out of pocket max when Harvard Pilgrim cancelled our health insurance and backdated it to June 30th.

Why? Lack of payment, supposedly. Except my account balance showed $0.00 and there was no option in the online payment interface (which we're forced to use because we went through the exchange) to make a payment. I thought it was weird, but we'd lost our subsidy earlier in the year (isn't that the point, working until you don't need the subsidy?) they'd overcharged us, and I knew they were applying the overcharge to our premiums. I thought it was weird that I didn't have a payment to make, but when Chris almost died it fled my mind.

... Until I found myself paying $450 for half a month's worth of Levemir because our insurance was cancelled.

According to them they'd issued us a new policy because the exchange told them to (the exchange says they did no such thing) and not notified us. When I asked them why the old policy was showing as active and paid then, they said their systems hadn't caught up, and I should have known about the new policy WE DIDN'T KNOW EXISTED and told them their system wasn't showing me the right policy.

Uh huh. I got blamed for their technical issue.

What's worse is shortly after I received an invoice for our active ongoing insurance policy with the same numbers and a due date of August 25th. Sent after they cancelled our insurance.

That might take a state senator, the insurance commission, and the governor's office to sort out because all attempts to fix it with Harvard Pilgrim failed.

And that's where we are. No income, no vehicle that is ours (and I need to give the borrowed one back soon), no health insurance, horribly expensive meds to pay for, and cancer treatment to continue while I fight with the insurance company while caregiving for a bedridden husband and an autistic mostly-non verbal hyperactive hyperintelligent escape artist 4 year old. And two dogs and two cats. And so this whole house of cards doesn't come falling down, myself as well.

I'm barely holding it together. Actually that's being rather generous.

So here's a lovely list of the things insurance won't pay for, if we had insurance:

A working vehicle
Another ac unit
An oxygen concentrator immediately, versus proving he needs it by jumping through hoops
Diabetic testing equipment that actually works
Food
Dog food
Cat food
Preschool supplies for when Christopher starts preschool in another couple of weeks
Landscaping because I can't do it
Gas
A roof over our head
All other bills
Whatever it takes to maintain my sanity and not kill myself with exhaustion

Anything would help. Anything.

I've still got the GoFundMe up and running, PayPal to chris@chrisbyrne.com always works and doesn't have a fee. Messenger Payments to me also works and doesn't have a fee. Or just ping me on Facebook, I'm easy to find.

Thanks all,

Mel

Thursday, July 20, 2017

I just spent more on meds than rent

I just spent $1,900 on meds and $500 in durable medical equipment in 42 hours. It would have been $2,500 on meds but I only filled half a month's worth of one med in the desperate hope that the insurance company will update our max out of pocket as met within the next 2 weeks.

Yes, one of his medications is $1,200 a month and is required to keep him alive. Another medication is $1,000 a month, also to keep him alive. Those are both new as of the hospital stay.

I've paid less for working cars in good condition. I've made less a month while working full time than either of those meds.

On top of that Chris can't go back to work because his cancer doc/ endocrinologist is accelerating his surgery and radiation timeline to as fast as humanly possible and "you're taking the next cancellation". When you're teaching in one week increments and your students sign up for classes and take time off of work (often weeks and months in advance) you can't be on a cancellation list. While his work teaching made it possible for us to nearly pull ourselves out of the financial hole we were in (and now is being dug deeper and faster) he can't do that right now.

So we have increasing medical bills AND no income, and I can't work AND pay for child care for an autistic child AND a nurse for Chris.

And of course, we need to replace a vehicle sometime in the next 3 weeks so I can give the vehicle I borrowed back to the actual owner.

Oh, and pay for things like meds and appointments until insurance recognizes we met the out of pocket max...

So trying to keep Chris alive and get him treatment as fast as possible is financially destroying us. We'll still do it, but we need HELP. Lots of help. "$2,500 in new medical costs AND we need to buy a vehicle so we can get him to treatment AND we need to pay the normal bills so we have a place to live and electricity" help.

Please, anything would help.

I've still got a GoFundMe up and running, and PayPal to chris@chrisbyrne.com always work, and I can always be reached on Facebook.

Thanks all,

Mel

Saturday, July 15, 2017

Chris has been hospitalized due to nearly dying

Chris was taken to the ER Thursday night due to life threatening complications of his spreading and multiplying stage 4b endocrine cancer. It had previously spread to his lymph nodes, there are now strong indicators that it has spread further. He nearly entered a coma, and while he is currently stable it's a tenuous stability.

Ultrasound showed that what before was one tumor is now one tumor doubled in size (and growing fast) plus a second tumor.

CAT scan showed worrying shadows on his lungs.

He needs oxygen to sleep properly.

He needs aggressive cancer treatment, and now.

He can't work during this. He's still bedridden from the last surgery, AND he almost went into a coma.

On top of this, our son was recently diagnosed with a speech delay and being on the autism spectrum.

Between caring for both of them I can't work.

Our vehicle just blew a head gasket and needs replaced.

We have thousand of dollars left to reach the out of pocket max on our exchange plan (thanks ACA) which we will need pretty much immediately.

Yes, everything is going wrong at once and we are financially wrecked. 2 adults that can't work, special needs child, out of pocket max for medical care, logistics of aggressively treating cancer, replacing a vehicle, and those tiny bills that are rent, insurance premium, utilities, food...

Financially wrecked.

What's sad is we had almost, almost pulled ourselves out of the financial hole. Now we're facing several months without income and with many more bills to pay.

Anything would help. ANYTHING.

I've still got the GoFundMe up and going, and PayPal to chris@chrisbyrne.com always works, or messaging me on Facebook.

Thanks all. Wish I had better news.

Mel

Tuesday, July 04, 2017

Today I lift my glass, to celebrate our Independence Day

Today is not veterans day, or memorial day, or remembrance day... 

It is not a day of mourning, or of thanks, but a day of recognition, celebration, and exultation...

Today  is the day we recognize, and celebrate our independence, as the only nation in all of history founded on the notion, that the only form of legitimate government, is that which is based on recognizing, securing, protecting, and defending; the fundamental, inherent, and pre-existing, unalienable individual rights of man... 

... and deriving it's just powers from the same... 

... a government of the people, by the people, for the people...

A government of the people, by the people, and for the people, AS INDIVIDUALS...

...all created equal, and with equal and unalienable rights...

...Not to secure, protect, and defend, society, or collective, or even nation... 

...but the individual rights of man...

To my knowledge we remain the only nation so dedicated. 

Our revolution began April 19th 1775, at Concord and Lexington... 
...a day we in New England celebrate as Patriots Day...
Our independence was officially declared July 4th 1776... 
...the day we celebrate today, as independence day...
Our revolution was won, with the surrender at Yorktown, October 19th 1781...
...six years and six months, of mud, blood, and toil, from the day it commenced...
Our new nation was made whole, and strode forth under our Constitution, March 4th, 1789...

In the last 242 years,  millions of service men and women have fought, and over a million of them have died; fighting to secure, protect, and defend, those fundamental, inherent, and pre-existing individual rights of man.

...Every single day in this country...and around the world... 
...millions still fight for those rights...
...in whatever way they can, according to their own gifts and abilities, and their own circumstances, whatever they may be...
...whether by bullet and blade, by badge or by ballot... 
...whether by words on a page, or spoken on stage... 

For all of my brothers and sisters who have fought, and all who have died... 

For all who are still fighting today, at home and abroad...

Whether you're here today celebrating with family and friends...

Whether you're lost and alone out there...

... and if you are, rest assured we are coming for you brothers and sisters, to bring you home...

Whether we'll meet again the other side of the veil, and share this toast with those who live forever, on fiddlers green... 

Today, I lift my glass, in honor of those who fought...

Today I lift my glass in honor of those still fighting, at home and abroad...

Today I lift my glass in  honor of absent companions, and fallen comrades... 

Today, I lift my glass, to celebrate  our independence day.

Tuesday, May 30, 2017

The Logical and Epistemological Derivation and Progression of Rights

Here's a post I started writing about... two years ago I think? Maybe three? In response to a question about what rights were, and how we know they are rights etc... but I never finished it. The same question came up today, so I figured I'd finish the post. 
... It's still not QUITE finished... I need to do a bit more of an edit... but it's MOSTLY finished. 
By the by... if you think something is circular, or a tautology, you're reading it wrong. There are no tautologies here, there are only derivations from first principle, with reference to falsifiability, and non-contradiction; presented as logical and consequential proofs.
Meaning that all derivations FROM first principles in the progression can be derived back TO first principles, without contradiction or falsification... and that many but not all of them have, in order to illustrate this. 
As sentient beings, of sound mind, able to make our own choices and direct our own efforts; and to accept the requirements, obligations and consequences thereof; we have fundamental and inherent rights, which pre-exist and presuppose any society, state, collective, or other entity.

Rights exist because of self ownership, not because of society, or the state, or collective agreement or consent.We own ourselves, in the entire... rights, benefits, obligations and consequences.

We are not the property of others, or of society; and society (or the state, or any other collective or individual) is not the grantor of rights... though if legitimate, society, or the state, should be a guarantor of rights.

This is generally colloquially referred to as the propertarian principle of individual rights, or the principal of self ownership.

To my knowledge, it is the only logical derivation and progression of individual rights, as and from fundamental first principle, which does not require outside appeal to authority (i.e. faith, God, society, the state, the monarch etc... though conveniently, it also does not contradict most concepts of faith in God either)... though there may be others I am not familiar with.

This is a nearly universally recognized (if not necessarily universally accepted) principle, by those who actually study such principles (philosophy and philosophers), and the nature of principles, knowledge, and truth (epistemology... a field of philosophy which asks "how does one know anything at all, and within such knowledge, how does one know what is true and what is not).

It is generally accepted as the foundational first principle of the enlightenment... and critically it IS, clearly and explicity, the fundamental principle of the constitution of the United States... and of the nation defined by it.

Rights are not granted or provided by the constitution, or the state, or society... our rights are fundamental, inherent, and pre-existing... they are recognized, and protected by the constitution, by the state organized and formed by it, and... hopefully... by the society living with that state.

First, to get it out of the way right up front... lets talk about God for a minute:


  1. Some believe there is no such thing as property, nor can there be... only stewardship
  2. Some believe that we are Gods property

There can be conceptions of rights without property, including without self ownership, or even without individuals, as we think of them... but they are entirely different from conceptions of rights where there can be and is property... Generally granted by "tradition", or "honor" or "god" or "gods" etc... They are not derivable from any logical first principle, but instead require appeal to authority (even if that authority is "honor" or "tradition").

In most Christian and Jewish theological concepts which include people being God's property, this is morally and ethically indistinguishable from self ownership in the context of the propertarian principle; except internally, to your own moral judgement and conscience, of your stewardship of Gods property (as delegated to you, the individual...though certain Christians theorize and promulgate more explicitly collective stewardship as well).

In Islam, you are owned by God, and are in total submission to God... That is the literal meaning of Islam. You are owned by, and submit to the will of, God, in all things, at all times. Anything you or anyone else has, is Gods property, you only have temporary posession, use, and stewardship of it... including yourself. You have no rights, nor does anyone else... only privileges granted by God, as God wills it.

This piece is not about the epistemology of faith however, it is about the epistemology of rights.

So next, lets get the other common concepts of "rights"... which by the individual conception of rights are not truly rights at all... out of the way.

Some believe that there are superior beings, who have rights inherently (or granted by God, or society, or position etc..); and inferior beings, who do not, or whose rights are inferior to others (unless granted superior rights by those who posess them), and who can be the property of another, or can be subject to another. This is the fundamental principle of nobility or monarchy, and of certain types of oligarchy, and other explicitly hierarchical societies.

Some believe that people... or at least our bodies, and the fruits and products of them, and their efforts (wealth, profit, property etc...) are the property of "society" or some other collective entity or construct. If you believe that individuals are societies property... then you don't believe in rights at all... though you may call them rights, they are not: They are grants of privilege, immunity, entitlement, license, or franchise. They can be given, taken, and modified, as society decides. This is the fundamental principal of most collectivist societies.

It is also the fundamental presumption most people seem to have, in most societies around the world today... including, sadly, most people in America. They THINK they believe in rights, and in individuals... but they believe that rights are grants of society, or the state, or the constitution; and can be granted, modified, or revoked, as the needs or preferences of society require them to be.

They THINK they believe they are individuals, and own themselves... but they believe that society decides on rights... and if society decides, then you don't actually own yourself, society owns you.

What about right and wrong?

In either of these alternate conceptions; as the superior individuals, or society as a whole, are the arbiter of rights, then there can be no standard of right or wrong, except as determined by those superior individuals, or by common consent; and when society changes its mind, then what right, and what is wrong, also change.

There are no right and wrong... only allowed or not... Which, sadly, is what all too many believe.

If there ARE individual rights, beginning with property rights, then at least some things are inherently and objectively wrong... with or without society, even if society says they otherwise... Specifically those things which violate the rights of others, by force or fraud.

Oh and, if one knowingly does this wrong, by choice, then one willingly consents to their rights being abrogated as a consequence... We respect each others rights, so that others respect ours, and if they violate ours, we don't have to respect theirs... though we still should, and we shouldn't disregard their rights to any degree greater than required to compensate us for the violation of our rights, or to prevent further violation or abrogation of others rights.

THAT is the ACTUAL social contract by the way...

...Not some BS about society and altruism etc... etc... etc...

A contract, is valid consideration, offered for valid consideration in return; voluntarily accepted, with valid exchange and acceptance of said consideration, according to specified terms.

This equal offer of consideration of rights, fulfills all requirements of a contract; both as individuals, and collectively... as all so called "collective rights" are not... they either do not exist, or they are rights delegated to the collective by others.

... Remember... I said this was a full logical derivation and progression... 
Might makes right?

Three other important things to get out of the way...

1. Just because someone, or some society, or some state doesn't know about or recognize or accept such rights, doesn't mean they don't exist

2. Just because someone, or some society, or some state, is violating or abrogating such rights, does not mean they do not exist.

3. Just because someone, or some society, or some state, has the power, or has granted themselves the authority, to violate or abrogate such rights, does not mean they do not exist.

To "think" otherwise, is to make the same logical error, as thinking that because people violate the law, there is no law; the same logical error as thinking that because people do wrong, that there is no right or wrong.

This is the difference between licit, and legitimate authority and force. Licit, is that which is allowed by "authority"... be it society, the state, the monarch etc... Legitimate is that which respects both law, and rights... and the law itself must be licit and legitimate to be right.

Rights cannot be disposessed of, only respected, violated, or abrogated; whether by force, fraud, or willing consent.

... Willing limitation of rights, competition of rights, and intersection of rights in such contexts are MUCH more complicated questions...

Proof?

As I said above... The propertarian principal of individual rights, provides for a logical derivation and progression of rights, from first principle, without external appeal to authority.

So... here is the logical and epistemological progression and proof of individual rights; from, in reference to, and in the context of; the propertarian principle of individual rights, or the principle of self ownership.

First, our assumptions, and statement of principle...

Sentient individuals exist.

Property exists.

Rights exist.

Property may be held privately, by sentient individuals.

Sentient individuals may not legitimately be property of other individuals or entitites.

If we are sentient individuals, not owned by society, or any other superior individual or entity, then we must own ourselves.

Now, we derive our progression of rights...

If we own ourselves, then there must be rights, inherent to our nature as sentient individuals... These rights begin with, and proceed from, the right of self ownership; because without rights, there is no ownership... only possession.

If there is an inherent right of self ownership, and we are sentient beings, then we must have the right to freedom of conscience.

If we own ourselves, and have freedom of conscience, then we cannot be dispossessed of our rights even by willing consent; as self ownership and freedom of conscience cannot be dispossessed of without negating sentience and individuality.

If we own ourselves, have freedom of conscience and cannot be disposessed of our rights, then our rights can only be abrogated or violated by force, fraud, or willing consent.

If we own ourselves, have freedom of conscience, cannot be disposessed of our rights, and our rights can only be abrogated or violated by force, fraud, or willing consent; then all sentient individuals have the same rights, and no individual can have any rights that are superior or inferior to the rights of any other individual.

If all sentient individuals have the same rights, which cannot be superior or inferior to any other, then no sentient individual can be superior or inferior to another.

If no sentient individual can be superior or inferior to any other, then no individual can own any other or be owned by any other.

If we own ourselves, have freedom of conscience, and cannot be dispossessed of our rights, then we must have the right of private property, which consists of the rights of posession, determination, use, exclusion, disposal, and benefit of such property (including our selves in the entire).

If we own ourselves, have freedom of conscience, and have the right of private property, then we must have the right of defense of self.

If we own ourselves, have freedom of conscience, and have the right of private property, then we must have the right of self determination.

If we own ourselves, have freedom of conscience, have the right to private property, and the right to self determination, then we must have the right of association.

If we own ourselves, have freedom of conscience, have the right to private property, the right to self determination, and the right to free association, then we must have the right to form contract.

If we own ourselves, have freedom of conscience, have the right to private property, and the right to self determination, the right of association, and the right to form contract; we must also have the right to form voluntary collectives of individuals and to delegate certain rights and powers to them.

If we can form a voluntary collective of individuals, all individuals have the same rights which cannot be disposessed, no individuals can be superior or inferior to any other, and no individual can own or be owned by any other...

 ....then no collective of individuals can be a separate entity unto itself with rights separate from the rights of the individuals making up the collective, nor can any collective of individuals be superior or inferior to any individual, nor possess or exercise rights not posessed by all individuals, or which are superior to those of any individual.

... Thus, we are able to have societies, and states, which respect and protect individual rights, and which do not violate or abrogate them; without requiring collective rights, or collective ownership.

That's the epistemological progression from the propertarian principle, through to the existence of societies and states, with the exclusion of collective rights, and collective ownership... It is a complete chain of reasoning, derivable from and to first principles... progression and regression.

All things which are ACTUALLY rights, as opposed to grants, franchises, etc... can and must be logically and epistemologically justified within this progression, or from this progression. All things which cannot be logically and epistemologically justified within or from this progression... as dervied from and in the context of the propertarian principle... are not, and can not be, rights. They are something else, that are not rights.

Saturday, May 20, 2017

Fail Fast, Fail Frequently, Fail Forward

Being "detail oriented" is generally considered a good thing. It can be a great asset... even a critical requirement... for people like engineers, writers and editors, reporters, accountants, MBAs and analysts, and academics.

As such, being "detail oriented" is often mistaken by those groups of people (and those who rely on them, or think of them a benchmarks to judge themselves, and others) as a hallmark of ...or even a requirement for.... intelligence, competence, and success.

Conversely, not being "detail oriented", can appear as, or be taken (improperly) as; a sign of disorganization, a short attention span, even stupidity and incompetence.

...but...

Being "detail oriented", is not always the right thing, or the necessary thing. Sometimes, it even gets in the way or is actively harmful.

Jimmy Carter was incredibly detail oriented, as were both Bill Clinton, and Woodrow Wilson...

... didn't work out so well for those three as president...

Mostly, It just made them micromanaging, and indecisive... Delaying decisions or actions until they had "enough data"; "delegating" to subordinates,  without giving them actual authority for decision making; and making decisions, only to modify or even reverse them, when "new information" arrived... whether that information merited such action or not, and disregarding the negative consequences of doing so.

...You know.... the usual result, when a "detail oriented" person has far too much information; far too little ability to judge the relevance, importance, or quality of information they have, and properly filter and route it; far too little expertise or experience in a particular subject or issue (or sometimes far too much, in which case they may start to second guess and over think things,nor to prematurely optimize); and not enough time or resources to sufficiently remedy any of these problems.

When a "detail oriented" person finds themselves caught in such a situation (unless they are one of those who can naturally step back, and see systemic complexities, and interactions, in the "big picture", and then properly generalize, and relate them to other data, other systems, other problems etc... ) they will naturally tend to fixate on the details they DO understand... regardless of the acttual importance of those items, or the quality of the data..... and establish confirmation bias based simplifications and logic chains, that affirm their own illusions of control over the issue... but actually, most likely  just make things worse.

It's hubris... and it is a near universal problem... even for those of us who have been specifically trained to recognize and avoid it... because the real world is far too complex, with far too many dependent variables, and far too few independent variables, with far too few ways to properly simplify arend sennd ND abstract data arend senndndbnd problem sets; even just to ACTUALLY understand, never mind successfully control very much, very well.

... Unfortunately our brains are VERY good at creating a convincing illusion of control...

...Until we crash, hard, into reality... And hopefully don't break anything.... or anyone... too badly.

...And of course, when it's a president who is having this problem, the consequences can be a lot more serious than when it's just some guy...

When you don't have the time to actually become an expert or authority on the 300 plus absolutely critical subjects you have to make decisions about every single day... you don't need to be more detail oriented... What you need, is to be able to very quickly understand the important principles, the overall context, what the most important and relevant details are, and what the variables, options, and consequences of various specifics of your decision may be.

Under those circumstances, being "detail oriented" actually serves to distract you, and gives you the illusion of greater understanding, expertise and control, than you actually have.

... which leads to even greater tendency towards not only initial error... but then a worsening death spiral of error and hubris.

You don't need to get all the details right... because you can't... it's not actually possible.

You need to be able to decide and act fast... but in the right way...

You have to observe, orient, and simplify to decision points; make decisions and set direction; effectively drive action and execution; then analyze the results of actions taken, and iteratively improve.

...and that's not a common ability, nor is it easy...

A very large portion of my profession, involves taking a huge amount of very detailed, very hard to understand, very technical information; documenting all of it thoroughly, along with context and history,  best practices, requirements, regulations, limitations and constraints... plus references etc...

Distilling all of those hundreds, or sometimes thousands of pages, down into both a detailed report with EVERYTHING... and far more importantly, a short summary; including the background and context, the important principles and issues, the most critical details, the risks and consequences, the costs and benefits etc...writing out specific requirements and recommendations, and prioritizing them, with an outline of actions that may be taken on such recommmendations.

It may have taken me and my team anywhere from a week, to as much as six months, to gather all the background and requirements, run all the testing, gather all the data, perform all the analysis etc...; with another five to ten days, full time, of writing it all up, into both the full report and the summary... maybe even twenty or more additional days, including outlines, drafts, revisions and the like... A full working month...

Then, I have to present that to the people who are financially and legally responsible for the operations of the organization... and they need to immediately, or at least very quickly, decide what to do about particular requirements, particular problems, particular options etc... Often in the room, right then. And they need to give a legal signoff, often with multiple literal signatures and copies, sent to auditors, regulators, courts etc...

Frequently, I have as little as 15 minutes TOTAL to make my presentation and explanations, answer any questions, and get approvals etc...

...Meaning the execs only have a few minutes to understand, and make their decisions as well...

If they get it wrong, or execute on it badly, they can personally be fined thousands  or even millions of dollars, or possibly even go to jail; in addition to the consequences to the organization, which may include huge losses of information, of direct revenue, and most importantly loss of confidence and reputation.

Good leaders, may go back and re-read the whole report later... certainly they will have at least two subordinates they trust, and who will come at it from at least two different directions and perspectives, dissect it in detail and review it with them...  but they don't have time right now.... Right now, they need to orient, decide, and act

To do THAT,  they will rely on the input from their trusted subordinates... and from me, the expert...

...They don't read the full report right now...they read the summary, and the charts, and the important notes etc... and they also read ME, as I'm presenting... and they read their own people, and their reactions or how something sits with them.

Theynobswrve the data, and they observe and analyze my word choice, tone, posture, and demeanor... and those of their peoples... and how they convey meaning. How certain I am of what I'm saying, and how competent and how knowledgeable am I, based on how comfortable and relaxed I am with my own work, and with the subject matter as a whole... even if the report may be unpleasant or distressing. How I weight the variables and options. My level of comfort and certainty... or discomfort and uncertainty... with my data, my analysis, my recommendations... everything...

...then based on this observation and analysis, they orient themselves to the problem properly,  make a decision right then, so they can make all the necessary supporting decisions, and take whatever immediate actions may be required....

...So that we can start moving and acting, as quickly as possible...and so that we can FAIL as quickly as possibly, as small as possible, and therefore we can iterate again... improving and correcting, as we go.

Because they don't expect to get every decision exactly right, the first time, every time... Or EVER for that matter... because it's almost impossible to do so...

... Becausenthey understand.. it's a lot easier to get it right by orienting on what you think are the right problems, and what you think is the right direction; acting on your analysis, until you get stuck into it, and find things you need to change; then iterating, and iterating, until you get it right.

Plan, do, check, act... repeated..... until you get it done, and get it right.

Fail fast, fail frequently, fail forward.

You might have noted, there is another president right now... who is essentially the polar opposite of Jimmy Carter... and  who is being portrayed as being stupid, incompetent, having a short attention span, and being rash... too quick to judge, moving too fast, without waiting for better data or understanding all the details...

Yeah... pretty obvious ain't it?

Now... I don't think Trump is some kind of genius... In fact, I detest the man on a personal level, and at best I'm unimpressed with him as a businesssman... a don't think he has any business being president, and I very much doubt that he will have a good and successful presidency... though I hope I am wrong, and he's very successful, and does very well for the country...

...But... I can say, that I recognize very clearly, the pattern of someone who is used to doing just what I described here... Orienting, deciding, and acting quickly, then failing quickly, deciding and acting again, and iteratively improving... or at least trying to.

He doesn't deliberate, or delegate, once he's already involved directly, or has to make a decision.... He delegates everything possible right up until he HAS to make that decision, and then gets involved directly; makes the decision, without second guessing, and acts on it, until it fails or requires revision. Then he makes another decision, acts on it, and If it fails, it fails... and they fix it again, and again, until you fix all the problems you can find... and hopefully, you're  successful.

Because every success, large or small, is made up of many small failures.

You decide and act as fast as possible, so you can fail as fast as possible... and  you want to know as quickly as possibly so you can fix or replace as quickly as possible.

Trump is TRYING to do this in office... and it's sometimes working, but mostly not... for various reasons, none of them good...

But... if you're paying any real attention at all, it should be clear at this point.... the narratives being drawn around the Trump administration?

Well... the media doesn't seem to actually get anything else right... why would they get this one right?

Especially since it would be against their own goals, and their own interests, to do so....

Monday, January 30, 2017

A long overdue review... Dennis Badurinas Dragon Leatherworks Custom Holsters... Damn fine holsters, damn fine man.

Back in 2011, I was still a reasonably popular blogger... and still a gunblogger in particular, with a couple thousand unique readers every day. I was still posting almost every day... still doing megaposts... and at the time, I thought the cancer hadn't slowed me down too much yet.

I was very much wrong about that last part... but it took me a while to figure that out.
Also back in 2011, Dennis Badurina was just getting Dragon Leatherworks going, and starting to make a... very well deserved... name for himself... and as it happens, he was sending out review samples to a few gunbloggers.

One day, I emailed Dennis, jokingly saying "Hey, where's my review holster?"... and being the good guy he is, Dennis wrote back and said "I didn't know you wanted one... Just tell me what you want, and I'll send it to you right away"... which kinda blew me away.

I wrote back saying I was just kidding... but he wasn't... he insisted on sending me a holster to review, so long as I wanted to review it. At that point, he was busy enough that his delivery times were out about three months, but he said he would have me the holster in less than six weeks, so I would have plenty of time to review it before bad weather in North Idaho made it difficult.

Well... I couldn't turn that down... I had seen the pictures and videos the other gunbloggers had posted, and read their reviews, and I was thrilled to get a piece of Dennis's work.

I took a good look at this website, told him what I liked, what I specifically didn't like, and the pistols I had on hand at the time... and I asked him to send me what HE thought would be a great holster based on those parameters.

Five weeks later... I'm sorry to admit, I skipped ahead in the line more than a little bit... Dennis emailed me to let me know the holster had shipped... A couple days after that, I had this beautiful piece in hand; a custom Dragon Leatherworks Talon.







Unfortunately, I was also in the middle of travelling for contract work at the time, commuting from Sagle Idaho, to San Francisco California and back, every week...

I would leave home every Sunday night to catch either the 2250, or the 0510 Monday flights from Spokane to SFO (sometimes direct, usually through salt lake, but sometimes other cities), work all week in the city, then head back Friday afternoon on the 1550 or the 1715 flights back up to Spokane.

...Because I was a stubborn and prideful idiot, who "wouldn't let cancer slow me down", and I just had to abuse and exhaust myself to prove it. That abuse and exhaustion would catch up with me a few months later... but that's another story...

I had the holster in hand for almost six weeks before I could actually test it, and take pictures and video. I took about 50 pictures both indoor and out, and made a five minute video... but I wasn't very happy with any of them... The lighting wasn't right, the focus was off in several important shots... in general, I just didn't think they showed the holster off properly, or made it looks nearly as good as it was.

I intended to just scrap the pics I took, and take an entirely new set of interior pics with a new lightbox setup I snagged off of Amazon, and a new set of exterior pics in better lighting and weather.

... and then things kinda exploded...

...Both for my family and I, mostly in a not so great way, but some things very good (like the birth of our son)...

...and for Dragon Leatherworks, in a very good way...

In the five and a bit years since Dennis made me this custom holster, his business has grown massively, and he has been recognized as one of the best makers of custom leather gear out there. He's even made holster rigs, and other props and items for several very popular movies and television shows, like NCIS and Jurassic World.

But, as far as why this review is so delayed... What it comes down to, is that the holster, and the original photos and video I took for the review, were both lost for most of that time.

I just found the original files a few weeks ago while going through old external USB drive... and Dennis just happened to message me a few hours ago, which got me to get my butt in gear, and post the review and pictures.

So... at this point, I'm just going to post the video review, and some of the pictures of the holster... because this is about the review, not about my tale of woe. If you want the rest of the story, you can read the rest below... or you can just enjoy the review and the pretty holster...

My disclaimer here... I don't think that the video or pics are good enough for a review of the product. My focus and lighting weren't great, my commentary is somewhere between wooden and dead... but Dennis said he just wanted me to post my honest review... that he wasn't worried about the rest...

So, without further delay, my already more than five years delayed video review, and photos, of Dragon Leatherworks custom Talon holster, for my commander length 19lls.


Honestly, my pictures and video really don't do justice to the piece. The lighting, color, focus, and background leave a lot to be desired... but they're better than nothing.






Unfortunately, the exterior shots I took were all unusable, as they were almost all out of focus, and had poor sharpness and contrast... these interior shots were at least OK, but really, the holster is a lot better looking than these photos.








To my mind, as far as active custom and semi-custom holster makers go... I think you can't go wrong with Dragon Leatherworks... Veteran owned, 100% hand crafted in Oak Ridge Tennesse... you should check them out.

They have several standard models, of everything from deep concealment holsters, to pocket holsters, to duty holsters, in every kind of leather and finish you can think of... and of course they do full custom original designs as well.

If you like the Galco combat master, or the Safariland agent series holsters... you'll love the Dragon Leatherworks Talon.

If you're one of the many folks out there who loved the original pre takeover safariland 568 and other 500 series paddle holsters (and their companion models, with j-hooks or belt tunnels replacing the detachable paddles)...

...and I am, in fact I think they're just about the best paddle holster ever designed, but I miss the now long past days when they were actually made of leather...

...then you should check out the Dragon Leatherworks Valkyrie. It's everything good about the classic Safariland paddles, only better.

... In fact, I think the next time I order a holster, it's probably going to be a Valkyrie, to replace one of my lost Safariland paddles.

... and that concludes the review portion of the piece... 

...So... if you are actually interested,  the rest of the story is under the break...