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

Sunday, December 31, 2017

2018 The Year of Collaboration?

(Cross-posted at Patreon)

For the last month or more my astrology and numerology mavens have been saying that 2018 will be a year of collaboration and cooperative effort. When they started that I snorted. I've always been best off working by myself. I guess to some extent I see art and writing as something you do all alone up in your lonely writers garret. This, to me, is not a bad thing. I spent a great deal of time alone as a child, and that was the only time I had any peace. Human beings, even those who love and support me, grate against my PTSD and cause me stress simply by being present. Even my beloved husband of 27 years can sometimes bug me simply be being alive and "in my space". So, yeah, I laughed at the idea of me collaborating.
But then my sister from another mother approached me the first part of December with big plans to collaborate next year on a project we have talked about for some time. She writes a marvelous series of children's books about Waldorf the Magician Mouse - that's him you see up there in yesterdays digital art. She writes, I draw. In fact, at this point we are not only talking about more books, but maybe even some video games as well.
Another dear friend from years ago also contacted me, and she, too wants to work together on some Kindle books.
Having been around both of this wimmen before, I know both of them encourage me to get things done only in the very best of ways. So I hope that 2018 will be a really productive year, both with my own projects, and working with others.
I consider Patreon to be a cooperative effort as well. Maybe I'll gain a few more patrons. The end of this year has certainly reminded me that we all do better when I allow others to help us.
Back 100 years ago when I was a sexy little titty dancer, my first mentor emphasized that when all the dancers work together, everyone makes more money. I found that to be very true over the 15+ years that I worked in the business. There was always a significant difference in income between the clubs where all the girls got along and worked cooperatively, and the clubs where everyone was "I'm number One" and back stabbing and all sorts of nastiness ruled. In fact, one of the reasons I gave up dancing (besides the fact that at some point no one wants to see you naked any more) was that it seemed like the younger girls coming in were all "me me me me" and you couldn't teach them anything - let alone that we all make more money if we work together.
Do you suppose I'm too old and PTSD and set in my ways to learn how to work together on writing and art? I hope not.
Blessedbe and Happy New Year!

Friday, December 29, 2017

Free Kindle Book - Peritoneal Dialysis for patients, caretakers, and medical professionals

Starting tomorrow, Dec. 30, 2017 my book about our experiences and the things we learned about Peritoneal Dialysis during my husband's six years on it is going to be free on Amazon Kindle.

Peritoneal Dialysis for patients, caretakers, and medical professionals

Hope you are having a great holiday. I was going to take the rest of the year off but the universe had other plans for me. That said, we got a lot accomplished this week - just not online.


Summer Foovay

Tuesday, December 26, 2017

(1) Any Last Words?

There is a running joke where I original come from about last words.

"Hold my beer. Hey, ya'll watch THIS!"

Followed by some incredibly stupid stunt that gets the speakers head knocked off, or otherwise lands on him "worlds' greatest fails" videos.

I feel a little like  I said something very like that when I signed up to do the 12 Days of Anime blogging.  I was halfway through Nanowrimo and feeling very unmotivated about everything. And that was before I moved up my relocation date from February 2018 to the first of December. Well, actually, it ended up being the 6th of December. And yet, here I am, finishing up all 12 entries - after a late start - on the correct day. Well, a bit late but my rule is it is still the day I woke up on, until I go to sleep. It's the night owls way of dealing with those date/time conventions based on a "normal" biorhythm. (I don't think it's normal so much as it is that of the majority of humans. Bats and owls agree with me)

So in honor of all those famous last words - here's a few I like best.

Thanks for joining me. 

Sunday, December 24, 2017

2-Anime; The Virtual Hug

There are certain anime series that act like a virtual hug. I'm sure all anime fans have a few.The anime you can go back and watch and smile and laugh and get warm fuzzies from no matter what is going on in your life. It doesn't cure anything - but it's a nice vacation and you go back to the grind refreshed and ready to fight another day.

Natsume Youjincho (The Book of Friends) was my first anime hug, and had a lot to do with me becoming an anime fan as a result. Fruits Basket is another one. Polar Bear Cafe, also does it for me. Poyo Poyo.

I can see that March Comes In Like A Lion has a very good chance of joining this elite group as well.

Anime hugs are usually slice of life, or slice of life plus some magic. They are warm and fuzzy. Even if bad things happen, everything turns out okay. Friends are loyal and loving. Family, even adopted family, stays together and supportive. Life isn't perfect, but problems mostly are either amusing, or can be solved in an episode or two. Everybody eats well!

Now that I look at the list and think about it - they almost all have a cat! Polar Bear Cafe doesn't, but then, they have pandas. Having a cat doesn't guarantee you a spot, but it must count for something!

What is your anime hug?

Image result for natsume and the book of friends

(3) Gamers! Isn't What You Think It Is

I really love all those marvelous anime based on LitRPG - and LitRPG that is well written. Sword Art Online and Log Horizon are the most notable examples.

And then there's Gamers! If you started this anime looking for another action packed adventure based in a game type fantasy world with references to the "real world" you are about to be very disappointed.

But if you can keep an open mind for a few minutes, you just might find yourself literally laughing out loud. I laughed so loud and often my husband was soon over my shoulder asking what in the world was I watching. The romcom is so ridiculous, and yet believable for that age group and social group (gamers) that any real gamer cannot deny the truth of it. And truth telling is what makes humor funny.

I've been a gamer since you bought a box with three magazine sized guides and a single set of strange dice to play D&D. Things have changed a lot since then, but games still attract much the same sort of people for the same reasons. Face it, most of us are to some extent socially awkward. Gaming may allow us to hide in our room and play with people we know only at a distance. But it also gives us a passion, and something in common to talk about. From that point we are able to make social contacts - however awkward they may be. Factor in the inevitable awkwardness that is teen life and it's a wonder any of us ever manage to marry and reproduce.

It's hard to think what else this anime would be titled, but I think one reason it is a sleeper of the season, and often panned in reviews, is that the title sets you up for another anime in the vein of SAO and what you actually get is Ouran Highschool Club Host. Free your mind, and you might be surprised how much you actually enjoy this little gem.

I also liked the sexy pin-up gamer girl bits at the end. It's just a fun little series, don't expect too much of it.

Image result for gamers! anime

Saturday, December 23, 2017

(4) I'll get back to that...

I am by preference, a binge watcher of anime. I find a series I like, and I watch it obsessively until it is done. So when the new season of anime comes out, I dip in and watch a few episodes of anything that looks interesting, and stick them in the que to watch when the season is done.

This year has had it's ups and downs. Right now I cannot watch any anime because we moved from Las Cruces,NM to Las Vegas,NV and the new place (Internet included!) has internet speed that would make your grandmother cringe. So I have a rather extensive list this year of anime I'm going to get back to... I thought it might be interesting to share it. Maybe you can tell me which ones first, or which ones I really may as well skip!

In no particular order then (alphabetical perhaps)

If you've managed to drag yourself through reading my anime blog entries you may have something of a notion of what I like and don't like. Feel free to comment "OH you have to see ____" or "you probably won't actually like ______"