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

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

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

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

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

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

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

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

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

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

*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

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...

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

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

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

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

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

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

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