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I’ve been passing the time by setting up my new computer. It’s all super fancy and exuding the perks of Windows 7. I guess. Anyway, for the first time in two years I was able to trot out my music library, scraped from the internet into a sizable collection of my favorite tunes from the better, good old days. I hooked up the surround sound speakers and lit up a copy of Stephen Stills’ Southern Cross before my wife stuck her head in my door (the first time today) and told me I was making too much noise and to turn it down. I reduced the volume and turned it from hi fidelity and hi definition surround into the flat Muzak drone of Wal-Mart. I shut it off. If you can’t enjoy it, what’s the point? Around here, everything I do stinks, makes noise or hurts someone’s feelings.  Never mind that I get roused all the time by the highly encouraged exuberance of children screaming with glee that could be just as wonderful somewhere else than right outside my door. I know that my smoking habit smells badly; but so do the countless open used diapers that populate virtually every wastebasket in the house, especially the kitchen. (What happened, Bob? You were hungry a minute ago.) If you look up the expression “double standard,” you’ll find a picture of our house. Okay, their house.

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I was supposed to go fetch my repaired scooter yesterday and then today, but I feel too shaky to drive. My wife keeps saying she’ll go with me and do the driving, but the few times I was ready, she had something else to do like play on the floor with the babies or shampooing the carpet she did last week. So I keep making appointments with the repair company and then standing them up. I wouldn’t be surprised if their opinion of me was low. I’ll try again tomorrow. If I miss that, it will have to wait through the weekend because the company is closed on Saturday and Sunday.

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Tomorrow is Friday and the day that hospice said they would return to see if I’ve changed my mind about staying their client. I tried the Trazadone they gave me for sleep the night before last. I went to sleep alright. But I walked around in a nearly uncaring cloud all of yesterday. Or would have if not for the helpfulness of my step-daughter to raise my ire. But even it was kind of passionless. I hate to sound like a scene from Star Trek with Kirk screaming “I need my passion!” after his psyche was cleaved into good and evil and he was trying to uncleave himself. But I get his point.  I don’t want to be dumbed down, I gotta be me. Jeez. Another lyric.  Is it just me, or does everyone’s life follow a pattern laid out by a film or music producer?

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I’m just an aging veteran

Who never returned from war.

I wasn’t expecting to get much,

But I thought there might be more.

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Anyhow, since they can’t provide me the O2 and their drugs aren’t the droids I’m looking for, and they got some important information wrong, my thinking is that there isn’t much point in retaining their service. I still haven’t heard from them since they said they would check on the oxygen thing and call me back. That gives me the distinct impression that they are finding me as problematic as I am finding them. Last night I put their Hydromorphone (dilaudid) dosing suggestion to the test. We knew that in the hospital that it took two milliliters of dilaudid to have a positive effect on my pain. So the question was, how many of these pills did it take to equal that two ml?  They called their pharmacist to ask, and the reply given to me was that it took four of the pills to equal one ml.  Ergo, I would need eight pills. Turns out the pharmacist said that it took 4 mg of the solid to equal 1 ml of IV dilaudid. In this case, that meant that one pill was equal to 1 ml. Always suspicious of medical advice these days, I blew off the four pill ratio and thank god I did. I took two of the pills and spent the next five hours VERY stoned. This told me two things; one, I was right to be suspicious and two, how can anyone possibly like being high on this stuff. I hated it. But then there I was with full doses of both morphine and dilaudid in me. I can only imagine what would have happened if I took eight pills. I sure as hell wouldn’t be writing this today. I’d be in the drooler ward. Or the morgue. And all because there was a misunderstanding; they were thinking and saying “pills” when their pharmacist was talking milligrams.  It’s an innocent mistake, but there sure seems to be a lot of those in my life. After a while, you kinda don’t care how innocent it is.

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Oh, well. No one ever said that life would be kind or fair. But I sort of figured that the promises made to me would be honored. I was wrong.  So I keep having these sound bites echoing in my head; The best care anywhere. Love, honor, and cherish. Factory refurbished.  P.T. Barnum said it: There’s a sucker born every minute. Perhaps that’s why I feel like I have a stick up my … never mind. I’m just grousing.

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My new super whiz-bang motor operated, computer driven telescope is still sitting in its box. The skies were really clear last night, and from my window I saw a shooting star. Usually you have to get away from the city to see them, but there it was, sliding across the sky against a backdrop of scattered diamonds resting on black velvet. It was pretty.  Anyway, I have to assemble the scope from it’s 8 boxes in the big box, and the instructions show it to be reasonably simple, but a process that must be executed with care. It’s very easy to jar a telescope and misalign the optical pieces. If that happens, you end up owning a $650 kaliedoscope.  So I’m picking my moment to spread it all out so I can follow the steps in the directions. Doing this in my room will be a challenge; it’s already pretty well packed in here. But this is the only room in the house over which I have even marginal control so it has to be done here. I can’t take it out to the living room because that is family territory, replete with toddlers who would be congratulated for their industry if they toppled the equipment.  I could do it in the middle of the night, but then that would mean foregoing sleep, which doesn’t particularly appeal to me. In my wife’s parlance, that means I am choosing to be cooped up.

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My beloved runs hot and cold; bipolar I think. But I’m no psychologist. I just know that one moment I’m being told how loved and important I am, and the next I’m a heinous and hurtful bastard who’s ruining her life. No middle ground. Today I’m apparently an ass.  It started yesterday, actually. Right after I got off the phone with a bill collector trying to collect a bill that had been paid. I emailed him a copy of the receipt and that shut him up. But when I got off the phone I said that I was really tired of being screwed, and the next person who wanted screw me better kiss me first. I didn’t use the word screw. With everything about her. my wife, I think, took it to mean I was talking about her. She’s been the ice queen ever since. I have no intention of setting her straight, she wouldn’t believe me anyway.

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Multiple Myeloma doesn’t only disintegrate one’s bones; it disintegrates lives and spreads its tentacles out to everyone adjacent to the victim. It’s easy to see how death could be a relief for some people.

It’s nearly 1pm and so far, not a single soul has so much as peeked in at me to see whether I’m upright or stuck in an ungainly position, frozen in the grip of rigor mortis. Or is that livor mortis? I’m not sure. I was just reading a detective novel and they spoke of lividity and livor mortis and I’m not sure if that was a typo or just an expression that television, movies and crime novels missed. I’d ever heard the expression before. Maybe you know.

I did manage to rouse myself from sleep just before 8 am so I could say goodbye to my brother in law. Living in Wisconsin, I may not see him again and I like the guy. He’s the only one in the family that I can have a conversation with; without it ending in someone’s leaving in a huff. I could feel the change –a sea change– starting last night. It was kind of a sneak preview of life after my brother in law left.

My wife had gone out to have dinner with a girl friend of hers. I knew she was going but wasn’t sure when she was leaving. She said she’d check in before she left. So when I went looking for her and didn’t find her, I asked her daughter if she’d left already. She had. So I said thanks and went back to my room. A few minutes later I decided to go get some take out and so I got dressed and wobbled out the door. I returned 20 minutes later with my bag of vittles and saw that the message light on my Droid was blinking urgently. I had a voicemail.

I dialed and then listened to my wife read me the riot act. She said her daughter called her and said I was very angry and upset that she’d left, and that I was slamming doors and snarling at everyone. She went on that she was just trying to have a nice dinner and she wasn’t going to let me screw it up. With a few names that didn’t sound very much like “dear” or “honey” the line went dead. I tried to call her back to ask what the hell she was talking about, but  she had blocked my number. “The person you are calling has elected not to receive calls from your number…” or something like that was what I expected to hear. But it just rang and rang. I didn’t even know you could do that, and made a note to myself to see if I could block everyone on earth except for my children and few friends. Maybe the VA too, but I wasn’t certain.

I was able to leave a message though, and so I did using exactly the same tone she did and told her that her daughter was full of crap and I was tired of her damn theatrics and her exaggerations and lies. It’s true. I am. I ended the message by telling her sweetly to stick it up her a__.

She rolled in about 9:30 and came in all sweetness and light, but I wasn’t having any of it. I’d been stewing for three and a half hours and so all I had to say was that I was damned fed up with her daughter’s bullshit, and I’d drink hemlock before I ever spoke to her again. My wife, surprisingly said she understood and explained that she was moving the kids into the rental home she owned. In that way, she could still keep them living rent free. I smiled and said great. And then told her that I would go along when she was shopping and pay for whatever we or she needed myself because I would never again contribute a singe dime to their financial lives. The kids are pressed for money because they bought a pair of $30,000 cars and their entire income goes to paying them off.  I figure life’s a bitch and it’s time for them to stand on their own legs and pay for their own errors, like everyone else on the planet.

The worm had turned and it took my wife completely off guard. She wasn’t used to me talking to her the way she talks to me. She said so and I told her to get used to it. So it’s been nice and chilly around here and again a first, it doesn’t bother me. I explained what I had done and was doing to my best friend when he called to check in. He hooted and said “fist bump.”  It filled me with bravado, which will probably not last. I love my wife in spite of everything and that tends to make me a bit of a coward when I talk to her. I usually feel like John Goodman as Rosanne’s husband when Rosanne is PMSing. So my sudden venom was a surprise, to both of us, really.

Anyway, I took the reins and called and made an appointment to pick up my newly rehabilitated mobility scooter, made VA appointments with Oncology and Xray and recorded the appointments in my Droid. Normally she does that stuff. But if she isn’t interested in taking her position as my caregiver seriously, then I guess I’ll just handle it all myself. I need to get used to it because my premonition, given all of the events of the past two and a half years, that I won’t be here much longer.

To hedge my bet, I called the VA social services group and made an appointment to speak with a counselor. Social services is the arm that helps with benefit retrieval and I’m applying for a home purchase certificate. My disability qualifies me for assistance in buying a home, and makes it kind of easy to get a house, especially if it is a HUD foreclosure. It makes me feel vulture-like in a way, because these are homes that someone screwed by the credit collapse used to be their castle. It feels a little like constructing a future on someone’s broken dreams.  I also want to get them to replace my limp-along scooter and get me a real one so I can do my own shopping and stuff.

In a moment of introspection I see that I am resigned to a failed relationship, and try as hard as I can, I can’t find any fault in my doing it. She loves me as she loves her cats, and she’s threatening to have one of them put to sleep because she doesn’t like its attitude towards the other cats. I wonder if I should start locking my door and night or keeping my pistol crossbow on the nightstand. She doesn’t like my attitude either. This love stuff can get awfully complex and confusing. Just ask me.

The good news of the day is that I have my brand spanking new Midwest Micro computer. A multi-processor powerhouse to replace my ailing laptop and that piece of junk I bought from uBid. I bought it with the money I saved up so my wife and I could take a romantic trip up to Ainsworth Hot Springs. But with no romance, it seems like using part of the money for a computer is a good investment. I may not be romantic, but the internet allows us to take little mental vacations as site after site is visited in the typical tourist style.  While I was at it, I bought a few books for my Kindle too. I have the feeling I will need to fill my time with lone pursuits rather than visiting with family members.

The Zithromax antibiotics seem to be doing a good job on my pneumonia. I’m not having to stop typing because I’m out of breath from laborious keystrokes. I only had a single coughing fit as I did my phone work setting up appointments. I’d probably dump this bug  lot faster if I would stop going out to eat at take out joints, but a guy has to eat. There’s a ton of food in the house, but all purchased to accommodate the tastes of my wife’s family, with the odd item or two for me. That’s okay, but my wife only knows a couple of things I like and so she always buys those few things, and now I’m kind of tired of them. It’s too bad she staunchly refuses to read Deludia; she claims to hate technology. But that doesn’t stop her from having an account at Facebook. Of course, if she did read my words, it would no doubt not be any revelation to, just another reason to be angry that I’m kept in such a constant state of upset. C’est la vie.I’m surprised her daughter doesn’t read it and relate it all to her. She lives to be a thorn in my side. she’s reminiscent of the Soviet political officers in cold war movie dramas, except nobody asks me for my papers.

So far.

So a while back I was surfing about and ran across uBid.com. A few years back I had signed up as a member and I bought a nifty digital camera for $10. The camera lasted about a year and for ten bucks I figured that was okay. Anyway, I logged in and went browsing. I found an IBM Lenovo computer with a high bid of $35. So I bid $40. I got outbid and so I upped my opponents $45 to $50 and lo and behold, I got it.

It was advertised as a factory refurbished unit, certified operational and included a copy of Windows XP. A couple of weeks later it was delivered to my door and I stuck it in the closet. I figured to keep it as a backup in case my laptop got sick. Well, the laptop got sick and so out of the closet it came. I set it all up and then added this and that software package so it would do the things I needed it to do. After four days it just suddenly turned itself off while I was using it.

Hrmmm. I thought. I turned it back on wondering why it was so rude as to leave in the middle of a conversation. But it failed to come on. Being a “computer guy” I pressed the catches on the sides and flipped up the top to get a peek at the innards. Perhaps a wire came loose.

The inside of the machine was filled with dust bunnies, and the fan was so choked that it wouldn’t turn. I realized that what turned the computer off was overheating. So I dutifully cleaned it all up, replaced the fan and tried again. No soap. So I sent a note off to uBid and asked them to please define for me what they meant when they claimed a product had been factory refurbished and certified.

They replied that their third party refurbishing company had dismantled the unit, cleaned it, replaced any part which had failed or seemed likely to fail, and that it was fully tested. I wrote back explaining what I had found and asked them to please tell me the name of the refurbishing company. I meant to tell them that it looked like someone in their employ was not doing their job completely. But uBid failed to give me the name, instead they offered to mediate and see if they could get me a replacement. They wrote back almost jubilantly saying that the refurbisher did have another unit and was standing by and ready to send me another refurbished unit.

Well, I didn’t want another machine from that company, I felt like I’d been defrauded and didn’t trust them. I also didn’t feel like finding all of the stuff to pack up the computer and then have to pay return shipping which was 2/3rds the costs of the stupid machine. I told them if they sent me a prepaid shipping label that I would return it, but for a refund. They said no, I had to take another box from the same company. And returning the computer was my responsibility.

I now have a whole computers worth of spare parts in my junk shelves, and I wrote the $50 off to learning experience. What I learned was that I shouldn’t trust uBid. I shared this information with them and they gleefully closed my account.

I don’t know why companies like uBid try so hard to protect vendors who are obviously selling equipment under false pretense. If my computer was refurbished, then I’m the Easter Bunny. Since uBid is so set on protecting and hiding their “high quality merchants” I kind of figure that makes them responsible –an accessory after the fact. Ergo my words of wisdom for today is, if you shop at uBid, make sure you know that your purchase may turn out to be quite a disappointment. The company is apparently only interested in getting their sales commission and aren’t too particular about whether the money is come by honestly. In other words, if you shop there, I think you’re nuts.

At least eBay, while definitely a den of thieves in its own right, will intercede for the customer and take monetary responsibility for any shenanigans. I know this because of the number of times I have stupidly bought the discarded effluence of someone else’s life, much to my chagrin. eBay is kind of a running joke in the family; it brings my loved ones no end of mirth to see me shriek when I discover I just paid $9 for something so bad I instantly discard it. However, I have found some pretty cool things on eBay –once I learned to check the box that limits the vendors to those in the US only.

But uBid is an auction site which I have no interest in ever visiting again. Not because what I bought was bad, but because the vendors were. I have renamed them to uLose.

All in all, it’s just more crap in a life brimming with odious fecal occurrences marching in lockstep with my pulse. If it isn’t some misinformed ignoramus indian giving an oxygen concentrator, my whacko family, the VA, or my health, I get to deal with schmucks like uBid. I am a veritable magnet for bad luck.

For now, I’m gonna sing a chorus of Born Under a Bad Sign and hit the sack.

It didn’t matter to the company whether people went outside to smoke. They said that with the concentrator in place that the walls, rugs, drapes and virtually everything in the house would be saturated with oxygen, and that the slightest spark could cause the house to explode, killing all of the occupants.

Of course, this is sheer lunacy. To achieve that saturation, the room or house would have to be highly saturated with the gas. If you understand what a concentrator is, then you understand why they are wrong. A concentrator takes in a gulp of air from a room. It removes the oxygen from that gulp and stores it in an tiny temporary tank. The plastic nose tube connects to this little tank and that where the patient gets their oxygen. But there is no increase in the amount of oxygen in the air. Even if the tank pumped that oxygen right back into the room, the sum total of oxygen in the room would stay the same. That’s because the machine doesn’t make oxygen, it just makes the existing oxygen concentrate in that plastic tube. That’s why it is called a concentrator and not a generator.

If the machine took in water, say, and pulled the oxygen from the H2O, then THAT would be an oxygen generator. The fears of explosion would have some merit, but it is still a bit of a stretch given the low part per million increase. What the company policy amounts to is punishing patients. Their policies, supposedly based in wanting to save lives, is merely an extension of a bigotry against smoking. It doesn’t matter if the patient smokes, any smoker in the building rates disqualification. That’s pretty draconian and outright cruel. I have been starving for air since they took my machine away and now I would like to see all of the air removed from wherever they might be, just in case their keys in their pockets might make a spark and destroy an entire community.

We all have prejudices and we prosecute those prejudices all the time. It may be a dislike for broccoli or it might be that someone doesn’t like black people, or have a disdain for Tobe Hooper horror movies. But it is all prejudice. Of it’s self, prejudice isn’t bad, it is the target of the prosecution and the effecting of the prejudice which can make it bad.

I tend to respect the law. History demonstrates awfully clearly that mankind needs some sort of structure upon which to base society. Even with a lot of that structure, we still have crimes against persons that range from simple accosting up to outright war.  The Bible says Thou Shalt Not Kill, but there is apparently a footnote that says it’s okay under certain circumstances if someone in a position of authority deems it necessary. I have yet to find that footnote anywhere, but it must be there, after all, we are at war. God apparently put out a number of different edicts because a rather large contingent of religious zealots say that God wants them to kill everyone that doesn’t follow the version of edict they possess. It’s all very confusing to me; confusing to the point that I see no point.

But prejudice is what prejudice is, and my particular gauge is this: Does it hurt anyone? If the answer is not an unqualified NO, then the prejudice is bad. No one is going to die because someone hates broccoli. But people can sure as hell suffer and die because some senseless, pontificating bigot thinks that oxygen is only for the dedicated followers of the anti-smoking movement. Some of you out there might hate smoking, but do you hate it so much that you are willing to watch someone suffocate and perish because of it? If so, get the hell off my blog, I don’t want you here.

If they want us dead so much that they’re willing to act upon it as they do, then they should be very open about it.

As to the whole oxygen danger concept, well, mere elementary science shows that to be the rankest kind of misinformation. Ignorance is excusable, it merely means that someone doesn’t know something. I am ignorant on many subjects as are we all. But it is bad news when one’s ignorance is of the products they proffer, especially in medical circles. I have been damaged by incompetence somewhat repeatedly over these last years, and here it is again.

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Post Script

When I called hospice to be reminded of the exact name of the company providing the concentrator, and mentioned my grave displeasure at the events, the wagons began to circle. I got a call from my hospice nurse who backpedaled and said that it was my smoking in the same room with the machine which was the point of objection. I responded by quoting her, something I’m easily able to do with conversations of importance. I also reminded her that I explained it was but one single cigarette and that I’d shut the machine off five or ten minutes before I lit up, and that the window (3×3 feet) was wide open and less than a foot away. I said no, they were clear that any smoker in the building disqualified me and that it was done and could not be taken back, and I was damn well writing about it. I have kept the name of the offending company from my comments because I am giving them time to realize the error of their ways. The tact then was to say that no one had any choice; the fire department sent an officer to them specifically about their oxygen concentrators, to iterate the deadly danger of these heinous devices. I suggested that they send him on over. Id be happy to put a plastic bag over his head, light up a cigarette and see if he wanted the cigarette out or if he’d like some oxygen. Sometimes a dose of reality can be very educational. Most bigots have never really inspected their views and so don’t realize just how ridiculous their premises might be.

The world is not made of Nerf. It is a dangerous place. Risk is a constant companion for any life form on the planet. But with a little common sense and preparedness, those risks are minimized. In that way we progress and we LIVE. I don’t care to live in a world of Nerf. In my days I skydive, race vehicles, go hunting and fishing, boating and skiing. All of these things can kill the performer and the people nearby. Overreaction is just as bad as underreaction. This world is as it is because we balance the two.

“I’ve been getting reports that you have smoked a cigarette in your room.” said the voice on the other end of the line. It was my hospice nurse.

“Yeah, I have. I said. But the oxygen machine was shut off and there was no more danger than when the machine isn’t here.” I replied. “And what do you mean that you’ve gotten reports? From who?”

She bypassed the question and went on telling me that I was placing the lives of everyone in the house in jeopardy by my reckless act. She then threatened that I could not have the oxygen if they couldn’t trust me to behave responsibly. Fine, take the damn thing. But I also know that realistically, if I was stupid enough to smoke with an oxygen tube spewing into my face that I would likely burn my face off. But there would be no house razing explosion that killed everyone in the house. Oxygen is not an explosive, it’s an oxidant. That means that it allows a greater rate of oxidation to an existing spark. Remove the spark and the oxygen will not burn. That’s simple science and is demonstrated to every elementary school student.  Could I set the house on fire? Sure I could. Could I blow it up? Not unless I ignited something explosive.

The thing is, all of the electronics in my room is a heck of a lot more likely to start an oxygen fed fire than a cigarette; electric sparks are quite a bit hotter and that why we use sparks to ignite the gasoline in our car engines. So to take exception to one possible source of ignition while ignoring a whole lot of worse sources seems a bit over dramatic and not very professional or real-worldly.

I fired hospice on the spot. In the first place, no one gets to violate my privacy. I will reveal what I choose the world to know about me. I do not like the idea that they are soliciting or collecting information that I have no knowledge of. We call that spying. Second, I hate over dramatization and don’t think it belongs in professional circles. But what we have here is worse for someone like me. We have people deciding how I should act and how my life should go. I realize that they are used to people who are so far gone they cannot do these things for themselves, but I’m still, as near as I can tell, lucid. I think about the bandoleer of Haldol in the ‘fridge with my name on it, and remember why it’s there. It isn’t for my use, it’s for their use when they determine the need. In other words, they want the ability to slip me a mickey should I become uncooperative. Then too, I don’t like the idea of Haldol as a sleep inducer, as they also claim for its purpose. Psychotropic drugs zone me out, take my creativity and passion. I could not write my blog under its influence because it issues from my passions. Passions that would never see the light of day if damped by Haldol. Xanax and Elavil and all of those things are mind stealers. They have their purpose and place, but not with me.

I’m bothered by the way they label their drugs (all day pain pill). Why not mark the bottle Naproxin and simply say what’s in it?

The last time they came over, I got a call a couple of hours in advance. The nurse told me not to smoke in my room for at lest an hour before she came over because she found the smell nauseating. I honored the request but when she showed up, she was chewing a very aromatic gum. I HATE gum. I always have and it’s smell literally makes me vomit. At the very least it makes me nauseous. I was glad when she left the room, but the spearmint odor remained for a couple of hours after she left. I realize that smoking odors have the same effect on people, and so I make it a point to keep it in my own confines or go outside. It seems to me that a medical professional that concerned about noxious odors should be just as concerned about her own trailing smells.

But my angst is mostly over the patronizing verve that bases their attitudes and perceptions. As I intoned in an earlier post, I think they are geared to people who are at the end and have no mental or emotional strength remaining and have thrown in the towel, or deteriorated to the degree that they’re incapable of self-sustaining.

I am not branding Hospice bad. Simply as an agency which isn’t appropriate. I also recall that my interest in Hospice originated with my trying to get them to help my wife, by providing extra bodies to watch over her failing mother and give my wife a break. I was pleased that it appeared they could help me, in light of the VA and its less than stellar performance. But while the financial costs are handled by Medicare, I’m stuck with the emotional costs of accepting their service and it strikes me as too expensive. I have to give up too much of myself.

My wife appears to be disapproving of my actions; she’s avoiding me again where for the last couple of days she has cheerfully checked in with me often. Today has the usual fee of the preceding months where there is the family and then there’s me.

It makes life very confusing, actually. And it drives home the old adage of not getting what you want, but if you try, you just may get what you need. Thanks Mick Jagger.