Monday, October 31, 2016
Happy Halloween - we got a trick. I've been mad so long that the whole situation is funny, in a macabre sort of way.
So 30 minutes into James' dialysis tonight I text him "u ok" because I can see him in the window and he looks furious. He texts back that he is in pain, the alarm on the machine has been going off continuously for 30 minutes, and they are trying to run the machine faster than the new, unmatured fistula is able to go. I ring the bell at the door and ask for MJ, the supervisor. A nurse answers, says she will get MJ. I wait 30 minutes. The nurse returns and says MJ is on the phone. I tell her they are running the machine too fast, she tells me no, it's by doctors orders. They never do it wrong. I already happen to know this is a total lie. James Moore is one of their last patients and they have repeatedly cut his treatments short so they can leave. As a results his Kt/V is now very low (he is not getting good dialysis). I wait another 30 minutes. James and I text a few times and in fear that the fistula will be damaged, he tells them to stop his treatment and let him go home. No fistula = no dialysis = death in about a week to ten days. Maybe sooner with the heart failure now. However, they have already given him heparin so he won't clot their machine, plus he is now on an anticoagulant - so they can't get him to stop bleeding once he is off the machine. MJ finally comes into the office and sees I am in the waiting room. She smiles and asks if I am still mad.
I ask her what is going on and she tells me that they would NEVER EVER run a machine too fast (ROFLMAO) and that they were using the right size needle and running it at 350 which it would do last week, but now it will not even run at 250 so they just don't know what to do. (Admit the access is failing and needs to be fixed or replaced? NOOOOOO Not that!) She can't understand why James is so angry. I mention he was in a bad mood when he came in because he wanted to go to the bathroom before a four hour non-stop treatment. When he went to the bathroom in the waiting room there was no toilet paper. When he went to the bathroom in the treatment area it was covered in shit and he adamantly refused to use it. This, by the way, is typical in this clinic. Filthy bathrooms with no toilet paper. In the treatment area. A filthy sink he is expected to wash his fistula in so they can see he cleaned it!!!! FILTHY. But I mention he and I had also had an argument earlier in the day - you see, he is getting bad dialysis and he is toxic, and we are out of food, money, and his Pepsi. So then it was ALL MY FAULT because we argued and he was in a bad mood.
The fistula is failing because we had a martial spat.
Then it was our fault because he is a PEPSI ADDICT. Emphasis on ADDICT. The fistula is failing because he is an ADDICT.
(Ignoring their own sure knowledge that he has previously quit Pepsi several times, each time proving that it makes no difference in his blood phosphorus levels - and that clearly it is not an ADDIC TION).
So he gets out and I ask for a print out of the treatment. 30 minutes later I finally gave up and left without it since no one would answer rings at the door, and no one was in the office. Medical clinics really don't like to give you print outs they know you can read and point out THEIR FUCKING MISTAKES.
Now what do I do? He can't have dialysis. I cannot call his kidney doctor because now all communication with her has to be through the dialysis clinic (this is a rule). They said they called her and he should limit his fluids.
Yes, care for End Stage Renal Disease by limiting his fluid. I have to wonder what they told her? Surely not that the fistula HAS FAILED and HE NO LONGER HAS AN ACCESS FOR DIALYSIS because, I dunno, she might have asked for some tests or called the surgeon?
No, we're told to come back Wednesday for his regular treatment.
HOW HOW HOW are they going to do that, since they are telling me the FISTULA IS NOT WORKING?
So, I am not allowed to call the kidney doctor. The clinic says it is my fault (of course). Now what do I do? He has no dialysis access and I cannot contact anyone who can order any kind of tests or examination or some sort of new access.
In a few days he'll fail and be back in hospital and you know what they will say then. ITS OUR FAULT FOR NOT GOING TO HIS DIALYSIS TREATMENT.
I don't understand what the point is of crippling along with poor or no access until he is near death. We have been going through that ONCE A MONTH if not more often all year. They know the access is bad, but instead of addressing that they give him a poor treatment, tell him to limit fluids, and send him home. They give him progressively worse dialysis until either they cannot get the access to work at all - or he ends up in the hospital with fluid on his lungs and you know the VERY FIRST THING we are accused of - is not going to his treatments.
In SIX YEARS we have NEVER MISSED ONE SINGLE DIALYSIS TREATMENT EVER.
But it is always the FIRST thing we are accuesd of - it is OUR FAULT he doesn't get dialysis.
Maybe I am still mad. After all, they sent him home with basically no dialysis. He may die in the next few days.
But it will be OUR FAULT.
Because THEY never make a mistake. NEVER. EVER. So it must be OUR FAULT.
We don’t cannulate the fistula. We don’t’ run the machine. We do everything they tell us to do exactly as we are told to do it. But if anything goes wrong, obviously it is OUR FAULT.
At some point mother fuckers it has to be YOUR GODDAMN FUCKING FAULT.
Tuesday, October 25, 2016
A reminder I really needed this year.
With that said - the top news is the husband has had several good dialysis treatments. His blood pressure is staying up and the fistula is working well. We've knocked out most of the follow up doctors appointments and (knock on wood) he has managed to stay out of the hospital for 30 days in a row so far. I'm shooting for one whole calendar month with no hospital days now.
Did you wonder what happened to the #PoweredbyIndie campaign? I got to wondering if it was doing me any good to use the hashtag and make little posts at Facebook and Twitter, so I went to look at my book sales. Hot diggity! A spike! I dug down to find out which book has been selling. It's this one:
Something with no mention, no advertising, and under my pen name at that! So after I picked myself up off the floor from laughing I quit bothering with that particular little campaign.
Now for #Nanowrimo. Yes, I changed my mind. I've never done fanfic for various reasons. One of them is that there isn't any money or potential money in it. Sure, I might get some fans, but I'm not even sure that would transfer to people who would buy my books on Amazon. It worked for housewife porn, but I don't really write porn any more - by choice.
But another part of the decision was this. Moving from the old computer to the new(er) one brought home again how many works in progress I have floating around here - from a single line with a bright idea saved in notepad, to 30,000 words or more lacking a proper ending or in need of editing. (I hate to edit) Do I really want yet another new WIP plopped onto the computer to stew for five or six years or more?
So I've decided to grab one of those WIP - one that is little more than bits and snatches of ideas, dialogue, good intentions and in one or two cases something resembling a plot - and make it my Nanowrimo novel. As much as I've read about people who are working up plots, doing up character sketches and other small prep tasks for Nanowrimo novels, I figure this clearly doesn't count as using a prior novel and believe me, I have plenty of WIP that are little more than that.
In fact, I have a big loose leaf notebook with four WIP done largely in long hand during last winter when for a time I did not have a working computer available. So I am leaning towards one of those or...here's a biggie...the next book in the Hunters of Men series, which exists almost entirely in my head at this point. I've had a couple stabs at it and get depressed and quit. It's a big job. But maybe if I can tempt a Nano friend or two into word sprints I'll get it well started enough to force myself through.
Meanwhile, I'm trying to finish up Serendipity over at Wattpad. It has about two chapters to go. I have to admit though, I'm enjoying it and can see how it could easily go on and on and... so maybe it will. And I think I finally have solved the doldrums the third book of the Blue Dragonfly series is in. At last, a plot! I've got a week to rewrite and finish that baby and then I hope to publish and maybe even spring for some advertising. The first book in the series has five unsolicited five star ratings - surely that counts for something? Maybe it will give me a chance against people with more money to spend to buy reviews and awards and publicity? I can but hope. (Looks up at the morning glory...)
Sunday, October 16, 2016
One of the great things about being #PoweredbyIndie is I can easily publish my #Nanowrimo novels for free. At the moment, I have two #Nanowrimo novels that are now available on the Kindle:Moving On is my first Nanowrimo novel, although hardly my first novel. It is the first that survived me and my mental blocks to be written, edited, and finally published! Like most first novels it is vaguely autobiographical - pretty vaguely though. It was more of a platform for me to turn lose of a few rants and pet peeves as well as to celebrate my love of kayaking and nature. As such, I really haven't written anything like it since - but I probably will eventually.
Bloodline was a massive project of a serial killer novel. It was intended to be the first of a major saga about this family who is more or less attempting to breed themselves as a superior human - the human predator to our human sheep. It got a really vicious review - by someone who has written a number of very nasty reviews of anything that isn't housewife porn - but it disenheartened me and I haven't returned to the series since. I, personally think it has a ton of potential, but writing it was a chore. I have enough work in my life right now, so I've been mainly writing sort of fun (for me) stuff like the light mystery Serendipity over at Wattpad.
There are a number of other #Nanowrimo novels in various stages of finishing and editing that I hope will make it out to the world someday. Of late I've been sticking with the 'keeping it light' theme and writing a lot of work based on the amusing bits of life in New Mexico, and inspired by my love of anime.
And with that, I have decided this year for #Nanowrimo to do something I have never ever done before. I am going to write fanfic for one of my favorite animes. You have no idea how scared I am.
Now if I could just decide which one. Natsume Shou Jin Cho? Silver Spoon? My Interesting Life? Mushi-shi? The Morose Mononokean? XXXholic? Hozuki no Reitetsu? Most of those are very episodic, so they would make a very easy #Nanowrimo project. I could pretty much work my way through the dares thread and come up with one little story after another for them. Of course, as far as publication they are a zero. Probably if I like it they will go up on Wattpad or maybe a fanfic site. Still, it is something new, something fun and something pretty easy. I've had more than enough uphill and against the wind days this year!
Speaking of which, the hubby is out of the hospital. He spent about a week, as usual, but for once he was actually not critically ill beyond the first few days. Everyone simply took advantage of the fact that he was off the anticoagulants (the first set of which was not working - as he did clot the fistula but they did manage to save it) to do this and that and the other invasive testing. The end result is that the fistula is now working for his hemodialysis treatments (so far) thus we don't have any more of that once a week surgery excitement when he clots off a permacath. The cardiologist got to do their angiogram and discovered his coronary arteries and veins - in their words - look great! The heart valve is still very leaky (working at 20% of a possible 60%) but it has been decided to try and control the heart condition with drugs only at this time. We had another try at a heart drug that once again dropped his blood pressure into the basement. As always, this made him feel awful, as well as endangered the fistula, what's left of his kidneys, and makes it near impossible for him to have dialysis. So we are off that drug and he is slowly recovering some blood pressure. All in all, he is actually feeling pretty good now. Walking again, doing little projects to the motor home, and generally enjoying life. We are scheduled for a dozen follow up doctor's appointments but we hope mainly to take it easy, get him stabilized and maybe get to stay out of the hospital and develop a little life and routine again over the next few months. I had to look up the dates this month - you realize he has been in the hospital for at least a day, more commonly a week or two, every single month this year since March? Poor guy.
Most of the time we have very little or no Internet. There is something in this location that cuts down the bandwidth and speed on our Verizon 3G Wifi to slower than dial up. It is purely the location, as when he takes it to the clinic and uses it during his dialysis treatment, it has great speed. We love our new location though - and it is much more affordable so far. We tried to have a regular Internet cable put in and was told they could not service it because we do move the motor home almost daily between dialysis and follow up doctors appointments. So to get good Internet again - we need to buy a car! This may take a little while! So if you aren't seeing me on line very often, this is the reason.
As always, doing the best we can with what we've got. And you know - I don't actually need Internet to write or draw...although I do need it to share it with you, dear readers. I'm sure I'll find a way ;)
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