Monday, January 29, 2018

One Step Foward, Two Steps Back

(Cross-posted to my Patreon and Wattpad)

I've spent most of the last week without any Internet, and no cell phone at home (I can text but not talk). Since I can't really leave home and go very far, this has been - to say the least - inconvenient. I had hoped, after all, to make use of this forced convalescence to work online on the Turk, writing, and doing artwork. In addition, I've been treated to a ringside seat to a screaming, throwing things domestic, and someone attempted to break into our apartment the other night - while we were in it. They try to break into the Firefly on a pretty much daily basis.

All of which has led us to the final decision that we have to get out of this apartment. Everything has gone bad and wrong since we have been in here. I begin to feel the place is cursed.

And we have roaches. Again.

Roaches make me scream and run. My phobia is deep enough that I still attempt to scream and run - broken pelvis or no. This has led to some rather painful moments. Okay, days.

In addition, I found out my traffic ticket is going to cost over $300. Ow. It has to be paid in February - the same month they are taking double deductions for his insurance because they "forgot" in January. Plus our first month to pay the new Medicare Part D for his scripts. We haven't even begun to look for insurance to replace his Medicaid. So we actually do not have enough money to pay the rent for another month. Even if we didn't want to eat, or have some form of transportation to dialysis.
Not to panic - we have until the 14th to move due to having moved in the middle of the month. But the sooner we're out of here the happier I will be. We have leads on a couple of RV parks that might take the Firefly. I have managed to get in and out of her once to see if I could. Hubby points out that once I'm in - I'm pretty much stuck in there, but I'm stuck here, too and if I have a choice...

But we also have a few other apartment complexes we want to check out.

So, until we get moved, getting moved will be our priority and these days we do ONE THING at a time.

Once we are moved and settled (somewhere that we dependably have Internet so I can get back to making millions), we will tackle the whole switching clinics,  getting new doctors, etc. again.
Meanwhile, Internet is an iffy thing. You would think that would mean I get a lot of writing done but all my manuscripts are currently stored on the cloud. And I'm honestly not feeling very good much of the time. But I'm going to try and do better. I downloaded a couple of things off the cloud to work on in case Internet magically vanishes again. (I magically have it today after about 4 days of none).

So - that's where we're at in life.

Monday, January 22, 2018


(cross posted to Patreon)
Frustration seems to be my primary emotion these days when it comes to getting anything done.

Frustration, of course, at not being able to get up and walk across the room to refill my drink or go to the bathroom, let alone go outside for any reason. 

Frustration with paying for our own wifi hotspot, and paying for the apartment wifi, and still not being able to check email, let alone something really complex like say - posting on Patreon. Turns out that is a problem with my new (used) computer - so I am back on the old desktop to have Internet - while my most recent work is all on the useless laptop with no internet capability. May I remind you that the old desktop is not compatible with the drawing tablet or software?

Frustration with the new dialysis clinic who insisted on a second full set of vaccinations less than a month after the last set. James was seriously ill by Friday and all weekend. I nearly took him to the ER. Tell me again how vaccines don't make people sick. We are working on the arrangements to transfer him out of Fresenius system completely and into DaVita. Anyone who thinks he will immediately get a third full set of vaccines (including the "one in a lifetime" pnuemovax) in under two months, raise your hand. 

Frustration with this system that has people working for it who can look me in the eye, me standing there obviously in pain on a walker, and say - we are cutting off your medical insurance because you make $20 a month in royalties and we don't believe you could stop that if you wanted to.

I'm not even going to try to find an orthapedic doctor that will see me for $20. Hope I didn't need surgery - because I'm just going to have to heal up as I am.

So since I can actually accomplish fuck all anyway, we had a nice, quiet weekend at home. I did work on the Turk a little. An anime blogger I follow did a review of Visual Novels and I have been off down the rabbit hole looking at those and thinking how grand they would be for some of my projects, and the projects of the people I'm collaborating with this year. Taking a video course on becoming a YouTube millionaire that is free and looks interesting mainly because one of the teachers does animated shorts and, again, ideal for some of what I'm going to be working on. I've been helping one of my collaborators figure out how to use her drawing tablet and graphics software. 

And resting and reading a lot. Yeah, old school hard copy books - LOL. I'll probably never break the habit of picking them up free and cheap whenever I can, but mostly I read and release these days. So I'm looking at this as a grand time to read some that have piled up. So far no real gems to review. No real dogs to warn people against either.

I am continuing to keep some of my books on Kindle out there for free. This week it is an oddball series that are kinky sex and murder. The story drooled out of my brain one midnight dreary in a sort of hallucinatory state and eventually turned into 3 books. 
The Angel Touches Silent , Silent Speaks , and The Fairy Princess. The first two are free - the last is regular price. I thought it would be interesting to see how many people found it interesting enough to pay $1.99 for the ending. 

Goals for this week - as much as I can make at the Turk. They lost a huge account that I used to work on a lot. That account moved to a new system and due to my Internet issues I cannot pass their qualification test! Maybe I will also finally get the next book in the Mia and The Black Cowboy sex story series finished. And do some editing and rewriting on one of the nearly done projects so I can get it published. If they are taking $250+ in benefits off us because I make $20 a month I best get a move on to replacing that! I also need to get back to the 385 digital arts blog. It was severely interrupted by the hospital stay and I simply have not gotten my shit together since. 

I wrote that before I figured out my graphic arts capable computer is not Internet capable.  
Thanks for hanging in with me.

Summer Foovay

Thursday, January 11, 2018

RANT RE: Dialysis Clincs - Kidney Disease - Medicare/Medicaid - Politics - Republicans

Seems like every little thing about this transition is going to be a struggle. We got in a knock down drag out with the new dialysis clinic last night. The Las Cruces clinic has told the new clinic in Las Vegas that James refused all vaccinations and also refused to sign the refusal form. Thus, he has had no vaccinations in the last 12 months.

Before we left, in early December, the Las Cruces clinic informed us that to be in a new clinic even for vacation, he would have to have a new recent set of vaccinations and a TB test. He did that. We received copies of the paperwork.

Now, the Las Vegas clinic informs us that it is not necessary for a transient (their insulting sort of word to indicate someone on vacation) to have a recent set of vaccinations and a TB test. And that they received no records of such having been done.

We were told the paperwork given to us by the Las Cruces clinic is not proof of vaccination (they handed it to us saying "here is your proof of vaccination") – since the clinic now denies giving him any such vaccinations.

We went through a back and forth; "Well why would the old clinic lie?" "Well why would we lie? Do you think I WANT him to die of the flu?”

If the patient says one thing – and has it backed up with paperwork from the clinic – but the clinic says something else – then the patient is lying. Period.

So he is going through a whole new set of vaccs - which he went through less than a month ago. This will be his third round of vaccines in a year - most of them are due yearly, one is supposed to be every five years. That's right - every five years. But he has had it THREE TIMES this year because we have "no proof" he has had it previously. 

Then they tell us that according to the records from the old clinic* he has not had a full series of Hep B vaccs in TWO YEARS and that it is OUR FAULT because WE MISSED SO MANY APPOINTMENTS.

During those two years, the ONLY time we missed an appointment was when he was IN THE HOSPITAL. Oh, and isn't it the responsibility of the CLINIC to keep track of that and make sure that he does get a full series at some point?

But no, it is our fault. And because of that he has to now be dialysized IN ISOLATION. So because of that we lose our nice M/W/F afternoon appointment, have to change to a morning appointment which completely disrupts his life, with a new tech, and a new nurse who don't know him at all.

We will see how it goes but I expect this to have a significant and very detrimental effect on his qualify of life since he will miss two meals and come home at 3 pm exhausted and sick, probably nap and disrupt his sleep pattern for, well, however long it takes before we can get back to an afternoon chair. 

I will be turning the old clinic in to ESRD Network for the two years of no Hep B protection today also.

We had the entire argument standing at the counter window with me leaning on a walker.

Then they brought me the financial papers Because, you know, he is a "new" dialysis patient. Apparently a "transfer" means nothing inside Fresenius, you have to start over as if you never walked into a dialysis clinic before.

They are literally asking when the date of his first dialysis was (2010).

We are signing today to say we will be financially responsible for the 20% of the $250,000 per fiscal quarter payments for dialysis that Medicaid in Nevada says they don't have to cover - because his income is too high. And that we understand that if we cannot pay, he will not receive dialysis.

Do the math on that one. If we had no other living expenses at all, and could apply every dime of his disability income to only dialysis – he will still die.

This has changed since the first of this year. Used to be Medicaid/Medicare covered ALL medical expenses for dialysis patients by LAW, by an ACT OF CONGRESS signed in 1975. 

But apparently that changed the first of this year. I'm hearing from a lot of people in the dialysis community that people are being refused dialysis until they are in dire straits - then they go to the ER and get one treatment and are kicked back out on the street until they are near death - then one more treatment. Needless to say - people tend to die in less than a year on that program.  This includes veterans, who are denied treatment by Medicare/Medicaid because they “should” have veterans benefits. Then the VA denies them treatment or places hurdle after hurdle in front of them until they die from lack of dialysis.

Thank you, Mr. Trump and Republicans. I wonder how many will die before the citizens of this country wake up? Or does nobody care anymore. I see a lot of attitude of "you people deserve to die" as if we ran out to "catch" kidney disease so we could get disability. Seriously? You cannot fake kidney disease. And no one really seriously thinks someone would do dialysis JUST to get disability and health care??? Really? 

I know cancer patients and others with chronic, debilitating, and fatal illnesses have been on their own all along. I happen to think that is very wrong, and someone should have gotten their shit together and gone to Congress and gotten all forms of cancer (among other illnesses) fully covered end to end like dialysis used to be. But I can see why others would resent the dialysis community and maybe even enough to want us all to die.

Well, looks like you get your wish.

But why is this your wish?

Do you think your income will increase when we are dead? Like do you expect a $100 bonus in the mail from your President each time a disabled person dies from lack of readily available medical care?

When you, or your mother, or your spouse succumbs to kidney disease, as a steadily increasing number of people around the world are expected to do in the coming years, please remember how you thought kidney disease patients deserved to die. 

For the rest of you, who are still healthy, and who care deeply and compassionately about this – I’m not sure what to ask you to do. Contribute to the Kidney Patients Fund or AAKP maybe. Call your government representatives and ask WTF. Vote Democrat. Maybe get crazy and organize and go to Congress as was done in 1975 by the medical community. Back when we had healers not millionaire corporations providing medical care. Help out the people in your own circle of family and friends with their battles if you can.  I can testify to how much help that can be, and how deeply appreciated it is. That might be the best thing you can possibly do, really.

Because right now, we are involved in a minute to minute every single day battle for every treatment, every medication, every minute of his life and don’t’ really have time to get all political.

By the way – this is part of the plan. If people are struggling to find their next meal – they don’t have the time or freedom to be political. Something you should think about if you are not yet fighting this fight and have time and money to spare.

I know you are young and healthy and have a great job and you've got the world by the tail.

Believe it or not, we were that age once, and we had all that and more. And now it is all gone - not because we did anything wrong but because the billionaires took every last dime away one way or another. They will do it to you, too. Don't think you are immune. 

And if you do, that's fine. I mean, karma works. The day will come when your doctor says, "I'm sorry but..." and you learn about all the treatments that you cannot afford and do not qualify for help for. On your death bed, remember how arrogant you are today. 


Summer Foovay

Living on the down low

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