Saturday, September 07, 2019

A short lesson on how to lie to get what you want... without TECHNICALLY lying

"My god, this may be the worst disaster in history. You may lose your house and your children may die!"

... A short lesson on how to lie to get what you want... without TECHNICALLY lying...

This headline... while somewhat overblown... may look familiar if you've been reading news and social ,edit sites the last week or three... Or frankly, the last few years, particularly the last 3...

... If not the words, than the sentiment...

.. and that is the problem... it's about emotion and reaction, not information, and reason.

That notional headline, is not about informing you... it's not even specifically about getting your attention; which combined, are the primary purposes of headlines for actual news and information pieces. Or at least they're supposed to be.

Those words, that phrasing, is an editorial choice... the choice to use what is sometimes called "purple prose"... and is not designed to engage and inform you rationally and reasonably...

...  In fact, its a choice specifically designed to bypass reason and rationality, and to enflame and instigate REACTION, rather than reasonable consideration.

Specifically, they want you to react by sharing their links and spreading the irrational and unreasonable reaction to others.

The people who write these pieces, and the sites that publish them, have one job

That job is not to inform you... No matter how reputable a source they may be...

Even formerly responsible "hard news" organizations, and outlets for serious editorial commentary and opinion; are caught up in the hamster wheel of the online content generation and consumption cycle.

That job is to generate currency...

Both material currencies like ad revenues, and promotional considerations, and the even more valuable currencies of influence, social capital, and political capital.

These currencies are generated by audience impact.

Audience impact is measured by traffic (and if they have advanced data mining, by gathering valuable metadata).

Traffic is generated by getting people to share links.

To get people to share linksat sufficient scale scale to be effective at that one job, generally  requires one ( or more) of three things:

1. The least effective way is to create good feelings... being cute, or interesting or funny, or sweet... That generates the fewest shares and the fewest clicks and the least revenue.

2. More effective is to make people angry, or to inflame outrage. This is very effective for certain issues... politics and social issues, almost anything about children being abused, things about people being cheated... that sort of thing. These  stories get shared a fair bit, and generate a fair bit of revenue... but they tend to be self limiting, and there's a large percentage of people who just don't care about any particular subject... Even the most important possible subjects you can think of, many people will just tune it out.

3. Most effective of all? Anything that scares people... especially if it scares people about their homes, their savings, their own life or death.... or absolute worst of all... anything which may seriously harm their children.

You might notice.. Natural disasters offer these outlets the best of all possible scenarios... Even better than the 2nd and 3rd place topics: war, and politics (crime and "justice", , celebrities and pop culture, business money and economics, health wellness and medical issues, popular science {often having little to do with actual science} and "family and children", and "human interest" round out the top ten "mass appeal" topics... Almost all other issues are considered "niche", "genre" or otherwise of limited appeal).

They can write feel good stories about people helping people, and saving pets, and that sort of thing.

They can write stories to make you angry, about looting, and theft, and government failures, and government abuse... the worse the disaster the better...

...but... For either 1 or 2, they still need things to actually happen, so that they can write about them... or at least things need to feel tangible enough, or "real enough" that people will get mad about them.

The real goldmine though... better at creating emotional reaction than anything else...

...is the absolutely INFINITE  possibilities for scaring people...

With fear, you get all the benefits of anger, combined with even greater likliehood of provoking unthinking reaction, and potentiallyfar broader impact. People are less likely  to ignore or tune out fear than anger, and more likely to react without thinking... or even reading more than the headline... and sharing the link....."just in case".

And the very best thing about fear based stories... even better than feelgood stories, or anger and outrage stories... is nothing needs to ACTUALLY happen.. or even be likely, or have any realistic chance of happening.

In fact, the thing doesn't even need to actually be plausible in the slightest, so long as they can confuse people enough that they may believe it... or the headline is scary enough that people share without reading... and that uncertainty is even better for creating more fear, and driving more traffic, from everyone who clicked and shared "Just in case".

So... step back, and look at the framing of the story... the phrasing and language and specific choices made by the author and editor. Look at the headline, and the included pictures.

... Are there a lot of verifiable facts, or is there a lot of passive interrogative or passive speculative  voice.. maybes, mights, and hypotheticals, presented as if they were facts or certainties?

Humans are inherently bad at evaluating risk... writers know this, and use it to lie, to create reactions, impressions, and emotions in the reader... while not TECHNICALLY lying. By properly  presenting a potentially catastrophic impact, with horrible unthinkable consequences, they know they can safely ignore the tiny likelihood of those unthinkable  consequences, because most most people, when forcefully and emotionally confronted with such unthinkable things... won't (...think that is... Most will either react with little or no rational thought, or if the feeling of threat or fear is great enough they will shut down both rationally AND emotionally do nothing at all).

When you examine the structure and language of a piece,  are  they using conditional or otherwise indefinite, but also extreme superlatives?  For example "this may be the worst thing ever" , or "If this happens, it will be the wost thing ever", or "if these conditions continue to worsen this may be the worst thing ever"... OR even sneakier and often more effective, establishing a set of speculative conditions earlier, then later treating them as if they are established fact; saying things like "the models show that this is the  biggest and worst disaster of all time".

Is there  an attempt to lay blame, or focus negative feelings for the "bad thing" on some vague and ill defined bogeyman, a  faceless but disfavored or unpopular entity or group, or a much hated specific organization or individual; with little or no attempt to prove or justify such blame, or a provide any kind of plausible rational causal link, or other factual or reasonable justification for such blame, or any other association of such emotions (or the reverse... to give credit to, or associate positive emotions with, someone or someething; without factual causal link, proof, or other rational justification) ?

Are the characterizations emotionally charged, deliberately attempting to induce emotions andreactions, and to create emotionally linked impressions and associations using linguistic psychology; like fear forcing, motive forcing, outrage forcing, suspicion forcing, negative association forcing, tonal forcing, or personal appeal forcing (appeal to ego, appeal to idealism, appeal to altruism, appeal to guilt, appeal to shame, appeal to conscience appeal to prurient interest, appeal to schadenfreude,  appeal to spectacle, appeal to ideology etc...) ?  Does it employ the classical fallacies: ad hominem, post hoc, cum hoc, false dichotomy or dilemma, straw man and the like?

How does the piece make you feel, rather than think intellectually and rationally? Go back and look at the text and other factors I mentioned above... Can you see these deliberate linguistic forcings, being employed to shape a narrative, specifically designed to create these emotions and reactions?

If the rhetorical content of a piece... written, spoken, or delivered through imagery... deliberately tries to make you feel or react a particular way, regardless of the facts... or even counter to them, or with facts being absent entirely; that piece is not news or information... It's not even editorial commentary or opinion...

... it's propaganda.

Saturday, March 09, 2019

"Cancer Free" Doesn't Actually Mean Cancer Free...

Something many people don't seem to understand about cancer in general, and my specific kind of cancer in particular...

When you have surgery to remove cancerous lymph nodes... it doesn't CURE the cancer. You still have cancer, it's just in remission, because you don't have enough actively malignant cancer cells to detect a large mass.

Even when they say you are "cancer free", it doesn't actually mean you're cancer free, it just means there are no detectable large masses of cancerous tissue.

... And you PRAY most fervently, that there are no large undetected masses... because there easily can be... and that you have a long while before the cancer grows enough again to be a threat to your life.

You have to understand... once cancer is in your lymphatic system, small clumps of cancer cells circulate through your entire body. You just have to hope and pray they don't implant and grow... or at least they won't for as long a time as possible...

... Because, barring some kind of miracle, lymphocytic cancer ALWAYS comes back... it's just a question of how long until it does.

My cancer is currently in remission... at least I hope so, because I haven't had a post surgical scan, or my six month scan. So there very well could be more large malignant masses growing in me right now... I don't have the money to get the tests necessary to know whether I do or not.

...But the odds are about 75% that it will be back within two years. About 85% within 5. About 95% within 10, and about 99.6% within 15.

... And my own personal history proves that out...

I had my first cancer surgery in July 2012.

We detected the lymphocytic metastasis in November of 2015.. three years... and had surgery in March of 2016, when they got "all the cancer"... and at they time, they absolutely thought they had.

Six months later, in October of 2016, I had approximately twice as many cancerous nodes as they had taken out in March... and at the time, it looked liked they had got all the cancer... again...

21 months after that, I had approximately double THAT amount of cancerous lymph nods and infiltrated tissue removed.

It's been a little less than 8 months... There's a very good chance I have more cancer right now... but I won't know until I can raise enough money... or work enough... to get the tests I need.

So... yeah... That...

Title 2 Regulation Isn't Net Neutrality... but it IS Warrantless Wiretapping...

Since it's coming around again...

...STOP SPREADING THE DELIBERATE FRAUD THAT TITLE 2 REGULATION IS NET NEUTRALITY...


It isn't. It has literally NOTHING to do with net neutrality.

Net neutrality is the SELF GOVERNING principle, that all network traffic between service providers and their customers, is the same. Traffic is traffic regardless of the content... except that certain types of latency sensitive traffic can be prioritized, and certain types of low priority non-sensitive traffic can be deprioritized, for network and bandwidth management purposes, and hostile or harmful traffic can be throttled or blocked, to prevent service degradation and the like.

This has, until recently, always been self enforced. Recently, some very large service providers have attempted to double dip, by trying to charge some very large content providers like Netflix, who use up LOT of bandwidth, but are not those ISPs direct customers for their primary data centers etc... That's double dipping, because those ISPs already charge peering interconnect fees, to the ISPs that Netflix already pays for their internet upload capacity.

Again, up until recently, if an ISP tried to treat any other ISP or organizations traffic worse than everyone else, the other ISPs would do the same for that ISPs traffic... thus nobody broke the rules for very long. That is still MOSTLY true MOST of the time... But a couple of the huge mega ISPs are SO big, that you cant do that anymore or you would slow down very large fractions of ALL internet traffic.

Title 2 regulation does ABSOLUTELY NOTHING to prevent that from happening.

Title 2 regulation allows for two main things... The FCC can set the rates large ISPs charge each other for interconnect peering, and it REQUIRES ALL TELECOMMUNICATION SERVICE COMPANIES (including email and VPN providers according to the Obama admin proposed regs) TO COMPLY WITH WARRANTLESS WIRETAPPING AND METADATA COLLECTION, which is the real reason the government wants it.

The FBI cooked up a plan to collude with other federal agencies, and an at the time cooperative and power grabbing democrat controlled FCC, to rebrand warrantless wiretapping, as net neutrality... which actually is, and always has been, something else entirely.

If you believe in phony net neutrality, its probably not your fault... you have been, and continue to be, deliberately defrauded about the issue.

The Same Lie Since 1932

The mean hourly wage in the United States, in 2019, is $24.34.

The daily food intake recommended for the mean weight male... 198lbs... is appx 2180 calories.

100 years ago, in 1919, the mean hourly wage, was appx. $0.56 per hour... appx 1/44th todays wage... which works out to about $0.0093 per minute... less than a penny.

2019s $24.34 average wage works out to about $0.41 a minute.

In 1919, that daily recommended calorie count in say... diner cheeseburgers... would have cost you about $0.45 (not including tax)... or about 49 minutes of work. Honestly... not that bad. Better than one might expect really.

Today, in 2019, the same calorie count in say... Mcdonalds triple cheeseburgers... is about $12 (not including tax), or about 29 minutes...

... Less than half an hour, and only about 60% of the labor it would have taken in 1919.

... But, perhaps cheeseburgers are an anomaly... after all, food prices have actually fallen in relation to income significantly more than say... housing, or energy costs... right?

Well... general consumer pricing adjustment for purchasing power parity...

$1 u.s. dollar of purchasing power in 1919, is equivalent to approximately $15.26 in purchasing power in 2019.

So... parity in wages with 1919 would be $8.55... but the ACTUAL mean wage in 2019 is $24.34... that's 2.85 times as much... Rather a LOT better.

... And yet, somehow,  the left are always claiming that the average american is worse off than they used to be... that only the rich are doing better... that  "the rich get richer and the poor get poorer"... which is utter an complete crap.

... Ok, well... that's 100 years ago... what about say... 50 years ago in 1969?

That's a particularly good example, because it's when the left claims that the poor and middle class started losing ground the fastest. They love calculating the minimum wage from 1968 for example, because 1968 and 1969 are the highest the minimum wage has ever been in terms of purchasing power, and it is the last year of the great post WW2 wealth creation and expansion boom.... and just before the mass inflation of the 70s hit (it actually started in late '68, but didn't really ramp up dramatically until 1971... then went into over drive with the '73 oil crisis).

Ok... mean wage 50 years ago, in 1969... $3.04 usd

$1.00 usd in 1969 purchasing power, is appx. $7.07 in 2019 purchasing power. That would make parity wage $23.26... but the actual wage is $24.34... making 2019s wage about a 5% increase in actual purchasing power.

Not a lot... but remember, 1969 was just off the peak year in the biggest boom in history.

Oh and just for fun... let's compare minimum wage purchasing power, from the literal highest point of purchasing power the minimum wage has ever been... at $1.30 in 1969. 
Parity minimum wage in 2019 would be $9.12... a fairly significant increase over the current minimum wage of $7.25...  
...Except that 1968 and 1968 were massive historical anomalies... Congress had actually just passed a 30% increase in the minimum wage. Only two years before, the minimum wage has been $1.00... which, funny enough, when parity adjusted, is just a few cents less than the minimum wage in 2019. 
If we look at the minimum wage when it was first passed at $0.25 in 1938, the parity minimum wage in 2019 would be $4.49... Just 62% of the actual minimum wage. 
Oh and the mean hourly wage in 1938 was appx. $0.84 an hour... about 3.35 times the minimum. Lessee... $7.25 time 3.35 is $24.29... amazing... just 5 cents less than todays mean hourly wage... Funny how that works out.
... So much for the myth that the minimum wage is supposed to be a living wage. It wasn't under FDR, it never has been, and it was never intended to be...

Ok... well, how about 40 years ago, in 1979?

Mean U.S. wage 40 years ago, in 1979... $5.55 usd

$1.00 usd in 1979 purchasing power, is appx. $3.69 in 2019 purchasing power. That would make parity wage $20.48... but again, the actual wage is $24.34... making 2019s wage an almost 16%  increase in actual purchasing power.

... Ok... 30 years ago?

Mean U.S. wage 30 years ago, in 1989... $9.73 usd

$1.00 usd in 1989 purchasing power, is appx. $2.08 in 2019 purchasing power. That would make parity wage $20.23... but again, the actual wage is $24.34... making 2019s wage an almost 17%  increase in actual purchasing power.

... One more shot at being even slightly true... 20 years ago... 1999.

Mean U.S. wage 20 years ago, in 1999... $14.74 usd

$1.00 usd in 1989 purchasing power, is appx. $1.53 in 2019 purchasing power. That would make parity wage $22.55... but one last time, the actual wage is $24.34... making 2019s wage about an 8%  increase in actual purchasing power.

So... the left, as is almost always the case, has lied entirely and completely about the economic situation of the American poor and middle class.

Yes, for a few years, starting 50 years ago, purchasing power did fall... from the end of the biggest wealth creation boom in history, through the worst peacetime inflation in U.S. history for 16 years from 1968 to 1984... It fell almost 12% over those years in fact, and stayed mostly flat another 10 years or so, until between 1992 and 1994.

However, from 1994 or thereabouts to today, it has been steadily increasing again (even including the 2009-2012 recession. Wages and purchasing power didn't fall at all in that period... though employment did fall, average wages still increased).

ALL Americans.. poor, middle class, and rich... are better off than they were 100 years ago, better off than 50 years ago, and 40 years ago, and 30 year ago, and 20 years ago... and even 10 years ago... 

... Of course, democrats can't actually win, if they don't convince you that the poor and middle class are worse off, and the rich are gaining at everyone else expense...

It's been the same lie they've been telling since 1932... and probably will be telling for as long as the democratic party continues to exist.

Saturday, June 23, 2018

Trying to Survive

7 days ago, my wife of almost 13 years, Melody, left me... For many reasons.

I dont blame her for going... She told me she couldnt take what our life had become a long time ago, and I just thought... a lot of things... and I was wrong. I put her through hell, just trying my best to live through this cancer and everything else... and I screwed up a lot ifnthings...  and I dont blame her for leaving at all... and now, I just want her to be safe and happy.

We were about to lose our home... we've lost it now... again for various reasons.

I know that she is safe, and she has the dogs and cats and they're OK and safe and good... and I hope Mel can have a better, happier life without me, and without the problems that have dragged us down for years.

The boy is safe and healthy and doing well, and has been since November when the state of New Hampshire decided that Mel couldnt take care of both our autistic son, and my crippled, dying, damn near bedridden ass... I am physically unable to take care of him, and he is doing very well with my aunt so he's the best off he can be right now.

At this point, I have no home, very little money, I'm just trying to survive.... For my son.

I have no home. I am currently in a hotel, and looking for a place to live that friends and family can help me pay for until I recover from the cancer surgery and can start working again.

I have cancer surgery scheduled for July 23rd, but I'm going to lose my insurance at the end of June unless I can pay $1900 before the 30th. I have applied for Medicaid and disability and every other thing... but my surgeon and hospital are in another state, and wont pay for them without a special exception, which I dont know if I will be able to get before I lose my surgical date. My cancer is advancing and will become inoperable soon. They also recently found a large mass in my skull, but the neurologist thinks its benign and can be dealt with later.

Thank you to everyone who has helped support our family... if you want to help me survive and recover, so I can be with my son, and help raise him and give him the best life possible... I'm accepting donations via PayPal, at chris@chrisbyrne.com

Tuesday, May 29, 2018

I'm just... So done.

Insurance is due by tomorrow, in order to keep insured. That's not the normal due date, that's the "pay by this or we're cancelling" date.

And we're not even close.

... That's before rent and such is addressed.

I'm just so tired, and so stressed, and so spread thin... I have no words.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Wednesday, May 23, 2018

Finally... PROGRESS

Don't have a surgery date yet BUT... Have clearance from the neurologist.

The "thing" that looks like a tumor in Chris's maxillary sinus? The neurologist thinks it's fluid retention and has cleared Chris for surgery.

Now just need to get the cardiologist to sign off (a way, WAY simpler procedure, let me tell you) and then on to surgery we go.

Which is good, because we're both exhausted and at the end of our ropes and barely hanging on.

In the meantime, just gotta keep a roof over our heads and pay the $1,869.56 insurance premium that's due by the 1st. And pay rent. And buy food. And all that good stuff.

But we're closer and the neurologist doesn't think Chris is dying. So there's that.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Sunday, April 22, 2018

Today started with coughing and puking up blood and bile...

And while Chris is asleep, I'm still monitoring him for issues.

If it continues, off to the ER we go.

In the meantime, Friday I was informed by the neurologist that insurance won't approve the neurological studies (2 MRIs and 2 MRAs) necessary to get Chris cleared for surgery to remove the cancer in his neck. Insurance wants the surgeon to order them.

The surgeon doesn't have credentials to order them. He wants the PCP to order them. The same PCP who sent the entire issue to the neurologist. 5 weeks ago.

Let's repeat this for the people in the back. WHILE MY HUSBAND IS DYING FROM LIFE-THREATENING CANCER, THE INSURANCE COMPANY WASTED 5 WEEKS AND DELAYED NECESSARY TREATMENT.

I am watching my husband die inch by inch, sometimes foot by foot, while the insurance company introduces unnecessary delays.

And of course it's not like they're paying the bills or living expenses. Those never stop.

Several people have said it feels like they're waiting for him to die so they can avoid paying. I don't know if that's true, but it certainly seems like it.

In the meantime we are BOTH losing our minds, and I need to pay insurance, rent, utilities, and all of that other stuff necessary to life. Because life doesn't stop for cancer.

As an extra bonus it seems Facebook has changed their algorithm again, and these posts aren't reaching that many people.

So please, if anyone could help, please do. We are just trying to make it through enough treatment to work again or make it through the end without getting evicted.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Thursday, April 19, 2018

I'm utterly convinced that the single biggest risk to someone's sanity...

Isn't doing, or being done to. It's being stuck, and being stuck waiting.

It's doing horrible things to us, I know this for sure.

Chris is literally bedridden and my depression... Well I don't think it's ever been this bad.

There's nothing quite like the helplessness of having nothing to do to fix things but wait.

Right now we're waiting for insurance to approve 2 MRIs and 2 MRAs of Chris's head and neck, because the neurologist suspects brain cancer.

And I am an utter wreck. EVERYTHING is on hold. Cancer treatment. Getting Christopher back home. Getting back to work. EVERYTHING.

And it's killing me. So much so that I went back on an anti-depressant that was part of a combo that had really bad side effects because I need to do SOMETHING.

Because we're waiting to see if Chris will live or die, and waiting on the clearance to proceed with treatment.

In the meantime, it's not like bills stop. No, those never stop. Rent. Health insurance I need to pay by the end of the month. Electric. Internet. Getting the truck fixed. Meds. Eating. None of that can stop.

And currently there's exactly $7.57 in the bank account.

But we're still working on all of this. It's just really incredibly difficult.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Monday, April 16, 2018

So surgery didn't happen...

Because the neurologist suspects tumors in the brain somewhere. For reasons.

So the neurologist ordered 2 MRIs and 2 MRAs.

In the meantime insurance cancelled us, again, because they didn't credit my payment in time (payment was in on time, they took a week to credit it).

Also, finding a place that insurance would accept that did Open MRIs and MRAs was... Problematic.

Solved insurance. Found places. Neurologist called radiologist for a peer to peer. That happened on Thursday.

It's Monday and as is my practice, I called them to check up and find out why the MRIs and MRAs aren't scheduled.

... Because insurance wants a peer to peer review because the neurologist ordered so many tests and they want justification.

*Screams*

So... Need the neurologist to clear Chris for surgery. Neurologist ordered tests because he suspects tumors in the brain. Insurance wants him to justify looking for suspected brain cancer.

That's where we are.

In the meantime I've gotta pay the bills, finish getting the truck fixed, and pay insurance. Again.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Sunday, March 25, 2018

Surgical consult done, surgery April 5th, if...

We get Chris cleared by a neurologist and a cardiologist first.

Please excuse how long it's taken to get this written, I had to request medical records, radiology images (not part of the medical records), arrange for the PCP to get a referral to a neurologist, and try to get Chris scheduled to see the cardiologist because... Surgery won't happen until he's cleared by both.

The problem with surgery is, when they put you under anesthesia the surgeon would ideally like you to eventually wake up again. The more... Difficult and touchy the surgery (think near arteries and trachea) the more true this is.

So I'm trying to get that arranged. For within 2 weeks.

In the meantime Christopher turns 5 on Wednesday, we're going to see him for Easter, and I need to pay someone to replace the front cab mounts in the Avalanche so it will pass inspection.

There's also medical bills that drained our balance, insurance to pay, and a roof to keep over our heads.

But yay, progress?

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Monday, February 26, 2018

Well, that was inevitable...

Surgical consult is on Friday. Then surgery in the next couple of months, if we can keep this up.

Unless Chris dies first.

Yes, we're there.

The mental and emotional states in this household are... Not good.

So... We're either raising money to get him to surgery and pay the bills, or raising money to pay the bills and get everything settled when he dies. It's really the same thing.

Either way he can't work, and I can't work and take care of him and everything else.

That's where we are. Surgery or death. Not sure of the order. Bills and groceries don't care, and wait for no one.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Thursday, February 15, 2018

Good news bad news

The good? Got the bills of February paid.

Also good: the borrowed vehicle is being signed over to us.

The bad: we don't have the cash to get it registered, which we're doing before the end of the week in theory, and we don't have cash for gas, food, and meds.

Surgical consult is the 2nd, not the 3rd. If we can manage to limp that far.

Also there's meeting the deductible and out of pocket max prior to the surgery, which is pretty daunting, and managing to survive while Chris recovers from surgery and the following radiation.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all.

Mel

Tuesday, January 30, 2018

Surgical consult is March 3rd

Then it all snowballs from there.

Thankfully electric is paid (thank you!) but it's almost the 1st and I need to pay the health insurance for Chris, and rent, and internet, and all of that good stuff.

... Plus meet the deductible and out of pocket max before surgery. Which since we're on the cancellation list for everything, could be anywhere from 2 months from now to next week, if the consult is moved closer.

Plus costs for getting over radiation, etc.

Right now though, we need to focus on getting bills paid and eating.

... And I really hate having to keep doing this.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Thursday, January 25, 2018

Perfect example of how things are going

Yes, I'm going to call them about this in the morning, AGAIN, and explain the situation, AGAIN.

As a bonus our debit for our last fill up of heating oil in December bounced, so they're running that debit again, plus the one for the delivery of oil we're taking tomorrow will be debited in a few weeks.

Still got insurance to pay, rent to pay. But I got some necessary medical equipment, meds, and food so far so there's that.

Surgical consult is on March 2nd. Need to keep up until at least then.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

Thanks all,

Mel

Monday, January 22, 2018

*starts writing* damnit

*starts writing* damnit, the words aren't flowing.

*Tries again* nope that's worse.

Fine, I'll just come out and say it.

I want my husband back. To his full capacity. Or something over 10% at least. Cancer is preventing that.

I want to have more hours in the day or less of a work load. Cancer is preventing that too.

I want my son home. Cancer is preventing that too.

I want to pay the health insurance, pick up necessary meds, order heating oil before we run out, get current on the rent, get current on electric, get current on everything, make sure the dogs have dog food... Finances are preventing that.

If I can get everything done that the current financial situation is preventing, and Chris gets cleared by his cardiologist and therefore get his surgery and radiation done, the cancer can be destroyed.

That's the bottom line.

I've got $500 in meds to pick up from the pharmacy today, we're $300 short on January's rent still and then we have the whole next month to deal with. And I'm exhausted. And discouraged. And hurting in ways I can't even talk about.

And Chris is worse.

And we've got $14,500 we need to raise for surgery.

So that's where we are.

If you feel moved to help, I've still got the GoFundMe me up and running, PayPal to chris@chrisbyrne.com always works, Messenger Payments is a thing, Google Wallet is a thing (melody.byrne@gmail.com).

We're just so damn tired.

Thanks all,

Mel

Saturday, January 20, 2018

What is it, and what does it mean?

I was asked a pair of fundamental questions:

What is your definition of disability?

And...

What does having a disability, or being disabled, mean to you?

Very BIG questions those... with very big answers...

A disability, is some functional area that requires a "normal" or acceptable  level of effort and difficulty for the large majority of the population, and which is considered "normal" and important to living life within a society; for which some people have either a total inability to satisfactorily function in that area; or for whom doing so, is so difficult as to cause significant problems in that person's life; or for which they require special assistance to function in such a satisfactory manner.

These can be physical, emotional, or mental.

That definition should I think, adequately address the functional aspects of both questions... social and emotional aspects are FAR more difficult and complex.

So... what are my disabilities specifically?

Well... I have limited mobility due to multiple severe musculoskeltal, and neuromuscular injuries, some with degenerative aspects in my joints and connective tissue; as well as arthritis relaated, and endocrine disfunction related inflammatory issues, which are also degenerative.

The pain from these also has general, and cognitive, disabling effects.

Then, further, I have general and cognitive disabilities, caused by stage 4 metastatic lymphocytic endocrine cancer, with thyroid, pituitary, adrenal, and gonadal insufficiency and disregulation; with associated paraneoplastic syndrome (including paraneoplastic insulin resistance), and degenerative neuromuscular and connective tissue issues.

I used to have near perfect eidetic memory... now there are times I can't remember the names of good friends, or the terms common to my profession which I have PhD level education in, and which I teach others at a postgraduate level.

There are times when I can't sleep for days... my record thus far is 12 days without full sleep (I was able to partially doze for short periods but could not reach full sleep), and more than 6 days with no sleep or rest at all.

On the other hand, there are times when I am overwhelmed by fatigue and the irresistable need for sleep, which when I am overcome, results in my sleeping for anywhere from 20 minutes, to 20 hours.... but the "sleep" is not restful or restorative.

I gained 200lbs, in less than two years, while on a restricted diet... because my metabolism simply slowed down, and I retained huge amounts of excess fluid. So much that I can still easily gain or lose more than 20 pounds in a single day and as much as 68lbs in three days, and 87 pounds in 5 days.

...Because of a specific spinal injury and little over a year ago, which caused rhabdomyolisis, partial kidney failure, and muscle death... I lost approximately 30% of the muscle and nerve tissue on on the left side of my body, from midback, down to my left foot andntoes.... I have spent the last 16 months, basically bedridden...

... and and of course, I am on my  third go around with this cancer, that is doing its best to kill me...

That's just a small subsample of the issues that have developed over the last 15 years that I have been fighting my illness.

So... it's understandable why I look in the mirror and sometimes, see a stranger, who only barely resembles "me".

Socially and emotionally... For me... I'm not someone who has ever given much of a damn about what other people, or "society" think... I am internally motivated and internally validated, almost entirely.

I am also someone who, for most of my life, both physically, and intellectually, outperformed almost everyone... There was very little I couldn't do, if I was sufficiently motivated... to a level that others might consider insane in itself...

For me... emotionally... what having severe disabilities has meant.. was that my body betrayed me, and made me... not me anymore.

Flowers for Algernon...

Thursday, January 11, 2018

Current status

PCP tomorrow. Cardiologist Monday.

My jaw frickin hurts. Why? Grinding my teeth so much. Even in my sleep. Because stress and worry. We can't make rent. We have deductible to raise in order to get the surgery done.

Then there's Chris's current state:

"I hate this..."life"... this damn cancer... everything else... it's no way to live.

I can't stay awake... several times a day, randomly without any warning, I have an overwhelming and irresistible need to sleep... and then I sleep for anywhere from 20 minutes, to 14 hours... and most of the time, get no rest from it...

...but yet when I'm so exhausted I can't think sideways nevermind straight, I can't sleep.

I can't drive alone or at night, because I may fall asleep suddenly while driving.

I can barely stand or walk, and the pain and exertion of doing so leave me gasping for breath for minutes, just from the few steps from my bed to the bathroom.

I'm barely alive... I'm not living... I'm just barely existing... and I can only just barely manage to stand it...

The only thing that keeps me going is that I need to be there for my family...

...and right now, well... that's not going so great either....

... not only have I not seen my son for two months... I had to consent to the state giving my aunt guardianship, because I can't take care of him like this, and Mel cant take care of both him, AND me...

...Hell... Mel can't even take care of herself right now, because the stress of this is making her go mad...

I cost so much to keep alive that I'm a huge damn burden, and I can't even work to earn my own keep, never mind provide for my family.

I am in so much damn pain, all the damn time...

It's really not worth it... except I need to be there, for my wife, and my son...

Now there's one more thing the cancer has taken away from me...

I'll never be able to fly again.

Having had ONE of the major side effects... ok... maybe two... but combine the sleep issue, with diabetes, one coma and one near coma, and now atrial flutter... I'm never going to be able to get a medical certificate again.

This goddamn disease is just taking me apart piece by piece, and taking away the things that make me... me.

More than 10 years of pain beyond most people's ability to imagine.... of progressively worsening disability... of losing everything that has ever mattered to me, piece by piece...

... and the only thing that makes it even close to worth enduring... Is that I need to be there for my family...

... and I can't even pay the rent...

...hell of a thing that...

The way things are... I'm in too much damn pain... this fight is too goddamn hard...

Honestly... the way things are... I don't much want to live... I don't want this pain... I don't want another ten... twenty years of this fight...

...but I have to...

...and I will....

...For my family..."

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, January 10, 2018

Life sucks

So... Life.

Current status: went to a guardianship hearing yesterday morning to give our consent to Christopher's great-aunt having temporary guardianship. She enrolled him in school.

Could have gone to the IEP meeting at his new school. Felt like I should go home instead.

Get home, Chris is urinating blood. Wait to see if it continues. Took him to the ER with a urine sample that looked like Merlot.

Too high of blood thinner dose combined with bladder infection. He's home now.

My cell phone automatically connected to the hospital wifi because it was still saved.

He got out of the hospital 2 days after Christmas and I had to take him back in yesterday.

Of course our deductible and out of pocket max reset. Because January.

In the meantime last month we put $3k of necessary repairs into the borrowed vehicle. Paid the health insurance. Filled the heating oil tank. Christmas.

And then... Last month was a really bad month for me. Possibly one of my top ten worst, and I've had months that included my husband almost dying something like 3 times now.

Between health, Chris needing so much care, Christopher having special needs, dealing with CPS and Christopher living with his great-aunt, and other things I've got going on... I'm only one person. And this person is exhausted.

But anyway...

Since we spent so much on vehicle repairs and health insurance and heating oil, I haven't managed to pay rent yet. Or electric. And then there's $8k in deductible for the next surgery as soon as Chris's heart is cleared for anesthesia.

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.

Thanks all,

Mel

Monday, December 25, 2017

Chris is undergoing a heart procedure tomorrow

He wrote this earlier:

"I'm in the hospital right now... In six days, the plan year resets, and I may not have had this heart thing resolved by then. If we don't have $1900  for the new insurance plan, we lose coverage entirely. Then there's the $4,000 in rent and other bills. And the $2,000 in deductible... and the $4,000 more in max out of pocket.

... and here I am in a hospital bed, with no way to make any of it..

Mel means well... but she's so ashamed of, and panicked by, fundraising, that she stops the INSTANT we get exactly enough to cover whatever emergency there is right then... she can't make herself keep going until we' actually get OUT of crisis mode, and have enough to cover the outstanding stuff on the horizon.

... and they still haven't scheduled my surgery yet... at this point it will most likely be february, but that's not scheduled or confirmed. Meanwhile I still have growing cancer.

Oh and by the by... there was a second nodule in my lung, and possibly a third... they saw them on the CT with contrast they did on admission the other day.

They originally thought that the first nodule probably wasn't cancerous, because there easy just one, and not several or a cluster. Well, now that there's a second nodule and maybe more, there's there's a much better chance it IS cancerous... if we're lucky it's just a leftover from having pneumonia and bronchitis for a couple months, because if it's cancerous... thats... really very bad.

... and we still don't have the boy back.

Merry Christmas everyone... take what joy and love you can... because there may be times that you cant."

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 20, 2017

This is not going well...

Let me be blunt: everything is FUBARed.

I'm apparently somewhat losing my mind. We don't have Christopher back for Christmas. There's a whole bunch of things wrong that I can't get into here.

I haven't even gotten the kid anything for Christmas yet because I haven't been able to. That's totally ignoring everything else that needs to be done. That's totally skipping Christmas for the adults.

I've got an oil change to get, a brake job to get done, gas to get, and a kid to visit for Christmas.

Ignoring cancer and docs and everything else that's currently wrong in life, we can't even go visit the kid for Christmas right now.

That's it. Wish I was in a better state of mind. Wish I had better news.

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

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