Tuesday, January 30, 2018

Surgical consult is March 3rd

Then it all snowballs from there.

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

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

Plus costs for getting over radiation, etc.

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

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

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

Thanks all,


Thursday, January 25, 2018

Perfect example of how things are going

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

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

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

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

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

Thanks all,


Monday, January 22, 2018

*starts writing* damnit

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

*Tries again* nope that's worse.

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

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

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

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

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

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

That's the bottom line.

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

And Chris is worse.

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

So that's where we are.

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

We're just so damn tired.

Thanks all,


Saturday, January 20, 2018

What is it, and what does it mean?

I was asked a pair of fundamental questions:

What is your definition of disability?


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

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

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

These can be physical, emotional, or mental.

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

So... what are my disabilities specifically?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Flowers for Algernon...

Thursday, January 11, 2018

Current status

PCP tomorrow. Cardiologist Monday.

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

Then there's Chris's current state:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'll never be able to fly again.

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

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

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

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

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

...hell of a thing that...

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

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

...but I have to...

...and I will....

...For my family..."

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

Thanks all,


Wednesday, January 10, 2018

Life sucks

So... Life.

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

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

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

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

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

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

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

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

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

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

But anyway...

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

Anything would help.

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

Thanks all,