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

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

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

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

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

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

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

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 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

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

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.

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

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

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

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

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

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

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

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.