Like those surveyors in the mall

Hmmm. I'm worried about my poll. Maybe I needed more answer options. Or maybe there really are only 3 people reading my blog. That's cool.

All creeped out

There are news stories, and then there are news stories. There are things that happen that, if they were to be presented in a book or movie prior to being a news event, would be scoffed at as implausible or too disturbing. Despite this, horror stories come to light--quite literally--all the time.

There was the case in the Pacific Northwest wherein the parents of adopted disabled children kept them in kennels and underfed them. There was the story about the girl in Austria who was held captive for eight years in a secret room under a well-manicured suburban home. In Texas, Arizona, and Utah, a polygamist religious group with cult-like beliefs has been engaging in widespread acts of what can only be described as wholesale incestuous fornication with children.

What is wrong with these people? How in the world do they pull off these horrors of human manipulation while family members claim to have been oblivious?

The latest story is also out of Austria and it so creepy, so wrong, so warped, it seems impossible, and yet, it's not. Josef Fritzl kidnapped his own daughter, kept her prisoner underneath the house she grew up in, and fathered seven children with her. And nobody caught on for 23 years. Either this guy in one hell of a sociopathic liar, or the rest of his family lives deep in denial. Or they're stupid. Fritzl has reacted as nonplussed, arrogant, and unapologetic. He said he felt he had the right to abuse his daughter.

This story is so sick, it makes my skin crawl. Fritzl is just too twisted to be real. I hope his stay in prison is painful, humiliating, and brief (as in, he gets smacked, packed, and whacked). There is something very, very wrong with humanity.

The Brainucopia leaks

On Saturday, someone marveled at how organized I am. We were at a picnic, and I had thought of everything. I'm sure this appears as organization to someone looking on, but it's really just the result of good list making. It might take me a week to make a list for an event like this. I've been known to get out of bed in the middle of the night to jot down another item on the list or to slap a Post-It note onto my purse.

My goal isn't to be organized. No, my goal is always the same: To avoid discomfort. Some people say that necessity is the mother of invention, but I contend that discomfort avoidance is doing the true heavy lifting.

I am that person. You know, that person at work who has what you need: A safety pin, tampon, toothpaste, Advil, paper plate, dish soap, antacid, fork, paper towel, plastic bag, floss, mint, hem tape, hair pin, eyeglass cleaner, air freshener, thank-you note cards, chocolate, band-aids...

I am not all that organized. Case in point. On Saturday morning, I left the house for the day only to get a call from my husband who had been out walking the dog when I left.
"May, did you know you left the front door wide open?"
"Huh? What? No. I mean, huh, yeah, I guess so. Sorry. If it's any comfort to you, I've only been gone about five minutes (it was actually 15. Shhhh.)."
"Oh, May. May, May. Sigh."

The next morning, I went downstairs and realized, much to my horror, that the night before I had not only left the iron plugged in, I had left it turned on. High heat. Good thing it has that auto-off feature. He he.

I got myself together and went out to the car. That's when I saw that I had left my car unlocked and the windows down all night.

Yeah, organized. Let me know what that's like. In the meantime, I live constantly muddled. Maybe it's lithium. Maybe it's middle age. Maybe my brain is full. Should I be driving?

Boogedy.

Boogedy, boogedy, boogedy.

Thpt!

And now, back to our regularly scheduled bipolar disorder

Someone recently described me as being "intense." I don't think I'm intense; I'm just a deep thinker. I don't intentionally challenge other people to think that way.

When someone says I'm intense, it's usually a euphemism for "May, you're spinning off into the stratosphere again." A hypomanic brain requires some keeping up with. From the outside, it looks chaotic: a mouth that doesn't stop, sleep that never comes, thoughts that go into new and sometimes fascinating places.

The first time my so-called intensity got totally out of control, George W.Bush had recently been elected. In the months leading up to the election, I was consumed by anxiety that the candidate who embodied everything I detested would be elected. Worse, the other candidate, Al Gore, would not be elected solely because the incumbent had an affair that, although it had absolutely nothing to do with running the country or working in service to the American people, was treated with moral judgment that was elevated to tabloid-like fervor. People actually believed that getting a blow job was akin to breaking the law. It made me stay awake at night and kept my brain spinning in a frenzy of fear related to having neo-conservative hawks massacring the Constitution and marching the country's population into something akin to a far right-wing cult.

When Bush was elected the first time, I spent hours and hours on the Internet stoking my fear by visiting Websites that spoke of conspiracy, diminishing human rights, plots to strip the American people of their privacy, conservative social control, and worse. I printed out articles and emailed these harbingers of doom to everyone I knew. Daily. At least. It was making me physically ill. I was consumed beyond reasonable involvement for even the most concerned of citizens. A lot of my fears came partially true, but since it happened when I was in a rational state, it didn't rock my world at all.

I abhor the current administration, though. I'll be relieved when it's over.

Another thing to know is that I am an avid NPR listener. Or was. Most of the last year, NPR was cranking out an overwhelming number of stories about all things Iraq-related. It was getting to be much too much, and then election issues started to crowd out the Iraq stories. The anxiety was coming back. My impatient intolerance started reaching maximum levels very early on. Now, when anything related to Barak, Hillary, or John comes in, I just turn it off. Off, off, off. I can't listen. I'm not disinterested, just anxiety stricken. I can't face the thought of getting caught up in the obsession fueled by worry and hypomanic distortion. I was out of control once, and I owe it to myself and all of the people who know me to manage my behavior appropriately this time around.

This is a very typical coping strategy for those who are faced with bipolar triggers. We tend to latch onto an issue and grow to show an unhealthy, unreasonable, and obsessive interest in things such as politics. For me, it became a tendency to want to warn everyone of the dire consequences of allowing Bush, Rove, and associates to continue unchecked. I overwhelmed myself and everyone around me.

I can't listen to the news this time around. I change the radio station. I cancelled my newspaper, I mute the TV. I am too BP to risk the emotional upheaval and triggered behavior that comes with this particular topic.

I still vote, but I find it a much more rational process if I carefully control the flow of information coming into or out of my head. And in the end, it's all about the in-and-out-of-my head that matters most. Still, it makes me feel very defective because I have a disorder that forces me to change my ability to manage everyday things, including some that I love.

Don't forget to vote

There's a poll running in the right column. Do weigh in. Here at Brainucopia, your opinion matters.

I wonder if this means something

Damn this shingles problem. The Florida trip really did some damage. I feel as bad now as I did right after I returned from New York. I'm taking Vicodin again along with Aleve. It's diminishing the pain but not eliminating it. That's right. Week four and Vicodin plus Aleve is not only necessary but not all that effective.

I still can't wear a bra, still can't wear fitted clothing, still can't sleep on my back or right side, still can't exert myself very much, still have a big puffy spot on my back.

I'm starting to get depressed.

What a cheery blog Brainucopia has turned out to be.

Care is a relative term

The United States of America is suffering from a systemic health imbalance. This is not necessarily an issue of rich and poor so much as an issue of dollars versus sense. I have not seen Michael Moore’s film, siCKO, but I think I understand the reason why he made it.

As Americans, we expect a lot from ourselves. We view illness as a weakness that takes us out of the esteemed loop of productivity. Illness is not acceptable in our culture, but not because of the discomfort and suffering it brings. I think if you were to really probe most people, they would reveal their true belief: Whatever it is, you really need to just get over it and get on with whatever work it is you contribute to the country.

Our culture does not tolerate sickness. It is during serious illness that you are likely to find out who your true friends aren’t. People may ask how you are, but they don’t want to know. If you’ve had whatever it is for more than a month, those around you have already lost patience with it. Compassion is not what we do best as a society, at least, not in terms of managing illness, not even by those who practice medicine.

In the late 1990s, a large wave of Bosnian refugees was settling into life in the U.S. Bosnians lived comfortably before the war, and most had never known a life without socialized medicine. Despite the country’s other problems, the healthcare system was excellent. Many Bosnians fled to Germany during the war and received additional excellent medical care. I remember one woman who injured her shoulder about nine months after she arrived here. She was told that to avoid surgery, she needed physical therapy and to wear a sling for a month, but otherwise, she should go about her normal activities. A week into her problem, a Bosnian man she knew stopped by her office and said, “Ah, well…If we were back in Bosnia, you’d have pain medication and a month off of work with pay.” They both sighed and nodded silently with nostalgia. They understood what it meant to be treated like a patient instead of like a liability.

When my mom had surgery last week, I was surprised she was scheduled through the day surgery unit. The procedure is not uncommon, but it is quite intricate and invasive, and the recovery is slow and painful. My mother is 71 years old and she is not physically fit by any means. She suffered a transient ischemic attack a few months ago, otherwise known as a mini-stroke. She was kept in the hospital for about 20 hours and released when her vital signs appeared to be stable. No further observation was deemed appropriate. For a stroke. The ER bill was $5,000.

In the wake of that TIA, Mom tripped and fell in her living room, which lead to a rotator cuff tear. The tear worsened with time, and eventually required surgery. The surgeon looked at the MRI results and diagnosed the injury as being “significant.” He said that the joint needed extensive repair affecting several different areas of the joint.

Despite the serious nature of the surgery, the insurance company still felt there was no reason for my mother to be admitted to the hospital for an overnight stay. Instead, the hospital requires the patient to bring a designated caregiver. From the time the patient goes into the operating room, the caregiver is bombarded with instructions. Here is the beeper. You will be paged three times. The first time, you will go to Room B and meet with the surgeon who will review the results of the surgery. The second time, we will let you know that your loved one has been moved to the post-op room. The third time, you will pick up a call from the waiting room phone and receive instructions before you go into the recovery room to wait for your loved one to be discharged. Return the beeper after the third call.

Once in the recovery room, you sit with your loved one, but not to keep him or her company. Your role at this point is to get a crash course in nursing and post-operative care. You will be immersed in instructions and details coming from at least three people, who will fill your arms with illustrated handouts and bullet-point to-do lists. There is an assumption that as the person accompanying the patient, you are qualified and willing to provide this care.

I waited for my mom’s blood pressure to come up to a normal range and leafed through the papers. My head was swimming. So many do’s and don’ts. I had to get up to speed very quickly on the mechanics of a Stryker pain pump and familiarize myself with the steps for its removal, catheter and all. I had to review the steps for removing and replacing a sling, removing surgical dressings, cleaning the wound area, redressing it, and keeping it sanitary. I was expected to know how to apply a post-surgical icepack collar, how to sponge bathe the patient, monitor medication dosages and pain relief, ensure adequate fluid intake, and watch for signs of infection or blood pressure changes.

In addition, I had to figure out how to dress and undress the patient without jostling the immobilized arm. I was expected to know what foods she could tolerate and which would be problematic with the medications and side effects of anesthesia. I was somehow supposed to understand the mechanics of getting my mother in and out of the recliner, on and off the couch, in and out of bed, and to and from the toilet. I applied lotion to her arms and legs, and powder to her chest and breasts which were being rubbed red by the sling. I analyzed that problem and came up with a solution to pad the sling. I cleaned up vomit and blood and did laundry. I created a “breakaway barf bag” that hung on a TV tray and was rolled open in a way that prevented it from collapsing closed.

I received no training for any of this, only a pile of photocopies and some rushed verbal instructions amidst a whirlwind of recovery room activity. I have a master’s degree in Language, Literacy, and Culture, not nursing, and yet I was supposed to just know what to do once we pulled out of the hospital’s parking garage.

In between the patient care activities, I did all of the things one actually expects to do when helping a loved one after surgery. I made repeated trips to the pharmacy and the supermarket, as well as to the post office and various other errand-oriented locations. I made calls—to the doctor’s office, to my office, to my mother’s workplace, to the pharmacist, to my mom’s Internet Service Provider. I answered the phone and gave patient updates to those who needed the information. I opened mail, unwrapped plastic-bound magazines, and I cooked. I did more laundry. I washed dishes, cleaned the bathroom, changed the kitty litter, took out the trash and recycling, vacuumed, and mopped the floors. I fixed my mother’s computer and updated the software and virus scan utilities, a process that took hours and went very late into the night. These tasks were not at all problematic because I knew what I was supposed to do and any minor missteps would cause no harm. But hands-on patient care? Medical waste disposal? Catheter removal?

The care I gave my mother in the 72 hours following her surgery should have been happening in a hospital and tended to by professional nurses, LPNs, and med techs. What kind of ethical deficiency allows our medical system to operate this way? Who considers this to be an adequate level of care? How is it seen as safe to leave such intricate measures in the hands of an untrained family member? What happens to those patients who don’t have anyone to assist them in the days following surgery? Are they expected to just fend for themselves?

Our medical system and insurance companies have made it very expensive and difficult to access the care we need. Being insured does not guarantee that you’ll actually get sufficient medical attention. You will get whatever the doctor feels is least likely to be questioned or whatever the insurance company has determined is the most cost-effective treatment for the least amount of money possible.

My mother has insurance. In fact, she has very good coverage, plus AFLAC and a comprehensive prescription plan with flexible spending benefits. If this is what you get with insurance, then I want to know what the money we pay in premiums and copays is being used for. Those of us with insurance usually pay thousands of dollars per year for what we believe is enough coverage to ensure adequate care when we are sick. It appears, though, that our thousands of dollars are not being held for our rainy day, but rather for someone else’s opportunity to invest in the stock market.

Again, though, it’s not about the money. No, this is about the ethical considerations of healthcare. I want to know where those ethics went and why potential patient endangerment is considered a risk worth taking when weighed against the cost of providing a full course of necessary treatment. The people who make these decisions are obviously soulless, hollow beings. The fact that their decisions may be of no help to the patient are completely irrelevant because these people believe that policy should be dictated by statistics and not by the needs of sick people who pay hard earned money to buy insurance that will ultimately fail them.

Whirlwind

I made it home. I slept on the plane as best I could in an aisle seat and with a restless three-year-old next to me (she has a cat named Boo-Boo and she misses him very much).

Holy crap, I'm exhausted. My shingles pain flared with a vengeance on the plane. Not sure what that's all about. Shortly after that started, I began shivering terribly. When I asked the flight attendant for a blanket, she looked at me, did a double take, and came back with two blankets followed by a cup of hot tea. I must have looked bad.

You know, I went back and looked at the post I did while deeply under the influence of Ambien. Besides the fact that I repeated myself, I was amazed by the radical deterioration of my typing abilities. Yikes.

OK, I am exhausted and all time-zone wacky. I need to lie down until I can think of something to say. I have an overwhelming three weeks ahead of me, and my job now is to figure out how I'm going to make that work. I also want to ponder how to write my thoughts about Wal-Mart. I spent quite a bit of time there this past week, and well, I just had some observations that will probably sound snide. Maybe more than probably.

May's brain is crispy now and she fears that given any more pressure, said brain will erupt in an ugly Bipolar Backlash. Hey, that would be a good name for a band.

What the hell was I just talking about again?

Zzzzzzzzzzzzzzzzzz.

Nodding off and exhausted

Mom is sleeping. She's in terrible pain. The Percocet makes her throw up, as does the Keflex. She decided to forgo the Kelfex.

I got on the phone and had her doctor paged. He prescribed Vicodin (ha!) and some kind of anti-nausea in suppository form. OK, there are definitely points where I only go so far in my in my nursely duties.

The surgery itself went well, but it was an extensive repair and therefore painful. I just don't see how she's going to get through this without help.I'll call her insurance on Monday and see if she can get a home health aid.

OK, I've taken my meds and I'm visibly swaying. Off to bed. More later.

I'm overwhelmed

My mom's surgery went OK, but she's in terrible pain. The Percocet and Keflex make her sick. She threw up on me today, but I took it in stride. Tomorrow I have to remove the Stryker Pump, help her shower, and redress the surgical incisions. I have no idea what I'm doing, and since there seems to be a lot of "shadowing" under the dressings now, I'm worried that this whole process is going to be much more difficult than it reads on paper.

She keeps this house so damn dark I have claustrophobia. I mean, the wood blinds are kept closed, the windows are closed up tight, the vertical blinds are drawn...I feel like I'm suffocating. I don't like air conditioning as it is, but to not be able to see outside is just maddening.

My mother needs a lot of help, and I don't see how she's going to take care of herself after I leave. I sent an email to my siblings, but so far, the silence is deafening.

If I could afford it, I would hire Molly Maids to come in and give this place a good, thorough cleaning. It's disgusting, and my mother can't take care of it. She had the rotator cuff injury since last September, and the house really hasn't seen much care since then. I am not all that well myself, and my shingles pain flared up a lot today. I'm going to do what I can, but it won't be sufficient.

I have no idea what I'm doing, and don't know where to begin.

Looking out the window

I just want to say that as we flew over the Gulf of Mexico, I waved in Lynn's direction. If anyone else happened to look up, I hope you know that was me and I was waving at you, too.