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

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