31 October 2011

Output vs. Input

Hello? It is very quiet and still here tonight. 
It feels as though there has been too much output with too little input. 
There is a need for something fabulous to occur. *glitter* 
Instead, it is becoming winter. 
We turn inward. 

What will our frosty reflections bring about? 
Can hot chocolate soothe a soul to release its secrets? 
Everything I have told is too much, but it is not yet enough.

What if we all went silent? 
What if we refused to tell our stories? 
What if there were no stories to tell? 
We would cease to communicate.
We would stop being human. 

It would be so easy to fail to mark the passage of time with ceremony.
We could pass from one day to the next unfettered. 
Our sense of loss only comes in retrospect.
Like looking out on an empty driveway after company has gone.
We turn away.

How are we so alone yet all together?
Can we accept what we are given?
Everything I have told is too much, but it is not yet enough. 

(hat tip to Douglas Coupland, Microserfs, and the mind dump)

27 October 2011

To Flow As Water Does

We are all going to die. Let me repeat that. We are all going to die. So get over it. Or at least do the best you can to get over it because you can't stop it from happening.

The problem is that as a culture we have grown to associate death with an end, with a loss, with grief, with pain. How would our relationship with death change if we could realign our perspective so that death is viewed simply a transition? Death is what is supposed to happen. It is natural. It is—depending on one's spiritual views—just another life event. If we talked about death more, would we be so scared of it?

There is a practice in psychology that involves addressing trauma by talking about it and by allowing the very feelings that one tries so hard to block out to be fully experienced. At first, the very idea of undergoing this process is terrifying and causes anxiety in a patient. A patient typically has spent great amounts of effort avoiding everything related to the trauma—sights, smells, sounds, textures, etc—that he or she has gone tremendously out of his or her way not to come into contact with the feelings originating from the trauma. I equate it to walking around the other side of a building that takes up a full city block in order to avoid a puddle. Patients most likely will not be successful in dealing with their trauma and its lingering emotions if they attempt to change their perspective by running headlong into the puddle. Rather it is a process. First, one must think about not walking around the other side of the building. That in an of itself is a challenge. Then one might decide to examine the puddle from afar. Next the puddle may be approached. Perhaps the patient throws a stone in the puddle. The patient might then sit next to the puddle. Each phase of the process is slow and dutiful, and at any time there may be regression so that the patient again must walk around the other side of the building in order to experience a bit of relief from the intense feelings that arise from dealing with one's puddle. 

This exercise allows the patient to address their fears and emotions with a certain degree of control. Control is the very thing that many trauma victims lost and what they try so vigilantly to maintain post-trauma as a method of coping. But trying to control everything that goes on around us is exhausting. Patients may seem stressed, hyper-critical, and unreasonable, but all they are really trying to do is protect themselves from being hurt again. Fear is the motivation. Fear is what must be quieted. 

Like trauma victims fear losing control and being subjected to reminders of their trauma or a subsequent trauma, we fear death because we can not control it. We try to. We hang on so tightly that we strangle our own lives, and when the time comes, deathbed wishes tend not to be that we were more punctual, or had the oil changed more often, or cleaned the bathroom tile grout more throughly. The regrets are that we did not live more, love more, laugh more. 

And so we must learn to let go. We must learn to control only that which we can control and which is worth controlling, and let the rest be as it will. We must relax, accept, and move with the fluidity of life like a leaf floating on the surface of a rushing stream. We will be swept along, we will reach eddies and be trapped by twigs, we will sink, and we will rise, yet we will still be a leaf. And when our leaf finally settles in its resting place, it's return to the earth will nourish new life, and so the cycle continues. 

As we accept our condition of impermanence and allow ourselves to move with the flow, we may still exercise good judgment to make preparations that will ease the lives of those around us at the time of our passing. Such is the role of advanced directives, which spell out an individual's wishes for end of life care in the event that the individual can not speak for him or herself. Rather than leave family members, friends, and caregivers wondering what one's wishes might be, one can have a say and help alleviate some of the doubt and stress of decision making. To issue an advance directive is to give the gift of peace of mind. For those who struggle with a desire to control life and death, writing advanced directives is the closest that one can come. Directives are not simply wills that divide personal belongings. Advance directives relate to all documents regarding the end of life. Directives allow one to say whether he or she desires life prolonging measures, whether measures should be taken for two weeks or two years, whether one wishes to donate organs, how one wishes to have his or her body put to rest, as well as how one wishes financial and property issues be handled. 

Those whose end of life wishes may be considered unique or those who already know that their wishes are not in line with their family's wishes are particularly encouraged to pursue advance directives. For example, I have determined that I want a green burial—one without embalming fluids that will allow me to decompose naturally in a green cemetery where coffins are made of natural materials or bodies are buried only in a shroud. My advance directive outlines this wish, as well as notes my desired cemetery, my casket of choice should one be required, my pall bearers, and my wishes for visitation and burial ceremonies—there will be punch and pie and pierogi. I update the document, which is a simple form that I keep on my computer, every year or so and have shared it with my husband and parents. My directive documents are not legal documents because I have discussed my desires with my family. My family is supportive of my decisions. Those who may not have this kind of support will want to ensure their documents are legally binding—not to sue from the grave, but for peace of mind. 

Evaluating one's own final wishes can be an extremely uncomfortable task. Consequently, my recommendation is to think about final wishes before one needs to think about final wishes. Although the questions often are deep and emotional ones, one is essentially writing an agreement—though is it easier for one to change his or her mind about whether to play Eric Clapton or B.B. King at the service than it is to get out of a cell phone contract. Families may wish to make writing advance directives a group effort to be approached with love and light and laughter. The fact of the matter is that the majority of people are afraid of the same things, which means that no one is actually alone in their fears. Like the trauma victim working through the therapeutic process, talking about fears takes away some of their power. 

Caring Connections, a program of the National Hospice and Palliative Care Engagement Organization, provides a wonderful set of resources for creating advance directives including state specific directives and information about starting a discussion with loved ones about advance directives and end of life issues. (To access these resources, visit this link.) Before beginning such a conversation, one should read Dr. Ann Becker Shutte's "Five Steps for More Compassionate Listening" to help facilitate a productive and caring dialogue. Shutte is a licensed counseling psychologist who also leads a weekly Twitter chat about end of life issues at 10 p.m. EST on Wednesdays. To participate, follow the #EOLchat tag. Make it a goal to have discussed matters with your loved ones—or better yet have written your own advance directives—by April 16, 2012, which is National Healthcare Decisions Day and allow yourself to spend your energy living instead of trying worrying about dying.  

22 October 2011

Not Cool, Man... Not Cool

It is 2:42 a.m. I am awake because there is something wrong with my butt. I know exactly what is wrong; however, I do not yet know the extent. The problem—and I CAN'T BELIEVE I'm telling you this—is that I have a cyst.

I happen to sit down a lot. I sit down a lot because I'm tired a lot because I've had a whole boatload of other health problems. I spend a ridiculous amount of time on the computer, and that requires sitting down a lot. I sit in these weird smushed up, twisted up positions, which apparently isn't good for the skin back/down there. From all I can figure, I have traumatized the skin, which has led to the current situation. I also have a very shapely booty. Apparently, shapely booty-ism can be a contributing factor.

I am mortified

Also, I feel kind of crappy. Today was the third day of waking up feeling pukey and self-medicating with Pepto and Protonics. I think I might have a bit of a fever. My back hurts, and it's been hurting for so long that I can't remember it not hurting. At least some of my back pain originates from the fact that my L4 and L5 vertebrae are off kilter. Last month, I turned to a chiropractor out of sheer desperation when I could no longer put on my underwear without propping up against either the bed or the dresser and groaning onerously. The chiropractor has helped some, though I admit that I am always skeptical of the practice and that my ten minute appointments, marked by loudly banging drop tables and gentle prodding, often feel like eating rice cakes—unsatisfying. However, the pain in my back is a dull ache that spreads into my buttocks. I have convinced myself that my cyst has grown to epic proportions, and when I go to the doctor, he or she will tell me that I need to have the majority of my butt removed, which is what seems to be the classic treatment according to The Internet. 

That's the problem with The Internet. The Internet provides information, yet typically does not put that information into context and typically exudes an alarmist nature. If we all believed what we read on The Internet, we would all be about to die of some absolutely horrible disease. Forum contributors share horror stories on what seems like a 9 to 1 ratio, which makes sense in regards to human nature—because few ever feel compelled to write, "I had this thing. It was treated. No big deal. Now I'm fine." Instead there are postings replete with failures to administer adequate pain medication, slow healing, terrifying side effects, and sometimes even pictures of profound disfigurement. I know. I've been reading these posts for the past three hours—and that's just in relation to the current medical situation at hand. 

I've spent enumerable hours reading about my other conditions including stroke, brain aneurysm, fibromuscular dysplasia, and gastric rupture. I read and research not because I am a hypochondriac—I've got enough stuff that's actually wrong to worry about what "might" be wrong. I read and research because I am a person who functions better when I have lots of information. I like to understand the history of a disease, it's epidemiology, it's treatments. Understanding diseases from a scientific perspective helps me get a handle on them from an emotional perspective. The human body is a truly fascinating thing, and if patients can get beyond the fact that fascinating (and sometimes terrifying) things are happening to their own body, then an illness is a wonderful chance to engage the brain and learn something new. Since being diagnosed with intimal fibromuscular dysplasia and tested for overlapping connective tissue disorders, I have become very interested in the endothelial cell. Knowing more about the endothelial cell probably will never help me unless I'm on Jeopardy, but it helps me help myself. Science takes away feelings of having bad luck. Science explains disease processes for exactly what they biologically and chemically are. 

One need not be interested in science in order to seek out scientific information about disease. One need only be curious. Research has shown that patients turn to The Internet when they are sick; however, I am continually surprised by the number of patients with whom I interact who have not done any research at all. These such patients befuddle me. I do not understand them. I do not understand how they can so blindly and blithely go to see their doctors and fail to engage in their own healthcare. Nevertheless, an internet search of any given disease can and will turn up a plethora of information that ranges from extremely detailed medical research to full-on quackery. It can be difficult for patients who are not researchers by nature to differentiate what is real, sound medical information from that coming from Aunt Sally Jo's House of Cards and Ill-Advised Shams. Real medical information can be daunting. It's a bitch to read. Most of the words are terminology only used within the profession. However, patients can still learn from reading medical information, particularly if they take the time to look up terms and exercise their critical thinking skills. A good place to start one's journey into personal medical research is at healthfinder.gov, which includes an encyclopedia, free health tools, and more. Beyond that, patients should look toward sites that end with .org, .edu, or .gov. There are, of course, reputable sites with .com or .net endings; however, the big players at the medical table typically will be found in the .org, .edu, and .gov communities. Use some common sense. If one fears he or she has rabies and one finds a site recommending drinking three gallons of buttermilk and rubbing his or her skin with salt, one would do well to think that the deadly viral infection could use more aggressive and scientifically-based treatment. Homeopathic and alternative treatments absolutely have a role in medical care. I am a fan of aromatherapy—peppermint for nausea, lavender for stress—and have had great results with acupuncture. I turn to chamomile tea before I reach for chemical sleeping aids. I've found yoga and massage to help relieve muscle pain. But if I break my arm, I'm not about to go chew some tree bark and forget about it. 

My discovery of a small pit in my sacrum occurred a few weeks ago; however, I dismissed it as some sort of run-of-the-mill boo boo. The second time it made itself known, I had my duty-bound husband investigate the area. He found nothing much cause for alarm. This evening, discomfort led to another investigation, and carefully chosen Google terms quickly led to the cyst's diagnosis. It seems that the area needs to be incised at the very least, and at the worse... well, I'm not going to talk about the worst. The beauty of The Internet is that it is available 24/7, so my restless mind was able to pour over several sites' worth of information, including one truly wonderful patient driven site, consequently working itself in a real lather. Thankfully, 2:30 a.m. on the East Coast is only 10:30 p.m on the West Coast, and one of my doctor friends on Twitter was still awake and able to provide a bit of advice—go to a doctor but not urgent care; instead I need a surgeon. I am decidedly not thrilled about this entire scenario, but to find someone knowledgeable, who actually has had the same problem before, to provide a bit of comfort at 2:30 a.m. is wonderful. That's another bit of beauty about The Internet—it and everyone on it is there for you when there's something wrong with your butt.

19 October 2011

Rethink Your ROI—Addendum

After Chris Boyer read my blog post, he felt that I had mis-characterized his tweets to prove a point. He posted a comment to say exactly that (see below) and tweeted it. Never one to let sleeping dogs lie, I tweeted back that I took exception to use of the word mis-characterization as it implies intent—and frankly, I'm not stupid enough try to slander or prove wrong the Director of Digital Marketing & Communications for Inova Health System and a member of the Mayo Clinic Social Media Advisory Board. I am but a wee blogger and ePatient. My network and scope of influence is, to steal a term, 1G. Boyer's is 5G+. Boyer presented at the social media conference at the Mayo Clinic (#mayoragan) today about the exact topic that came under discussion during the aforementioned #hcsm chat—ROI. Apparently, the packed house ate it up, loved it, downloaded it, quoted it, and in the end, sang along to it because Boyer did a little ditty on the ukulele. I didn't get to see or hear any of it. I was home following along on the Twitter feed singing an extra piteous version of "Alllll byyy mysellllfff... don't wanna be allll by myyyyysellllffffffff" because as a patient and a blogger (and for extra pity—a teacher and a professional writer) I can not begin to afford to go to conferences like that at Mayo on my own accord. There are a bazillion other things I can not begin to afford—an iPad, a real vacation, someone to finish painting the bathroom, my medications—but I digress.

So I tweeted back to Boyer that I took exception with the implication of his use of "mis-characterization" and—for the record, I also take exception with his saying I "cherry-picked" out his tweets because it took a heck of a lot of time to go back through and piece together the relevant parts of the conversation without one of those handy Twitter transcripts, and I took pains to make it coherent, and no, I did not include everything that was said in the whole chat because it wouldn't have made sense to readers. For transparency's sake, there are screen shots of all of Boyer's tweets from the #hcsm chat during the time period in which the topic of ROI was discussed and during which I was part of that conversation. Boyer asked that I mention a tweet that came through after I'd left the conversation, which I am happy to do and which is this: "We should all strive to give the best care, have the best relationships and be fiscally sound with health care social media. Simple." In my tweet back to Boyer (really, it was only 140 characters) I said that perhaps his statements had been misperceived, and if so, how do we fix that—overall. 

Robert West, a medical faculty member at SUNY and Twitter personality, had seen my tweet about my blog post and responded, "Well-written post! Gr8 take-home message. Chris just needs to iron out some of the kinks in his communication platform. :)" I've followed West for a while now and think he has intelligent and thoughtful things to say, so I was please to receive these words from him. "It's all about having the discussion and approaching the problem from several perspectives. Thx for your kind words," I replied. West tweeted back, "Agree. And you made a valuable contribution to the #hcsm community." Awesome, right? So I was more than a little confused when Boyer and West seemed to switch stances. West replied back to Boyer's "mis-characterization" tweet, saying "though points raised were very good, I give u benefit of the doubt" and then Boyer wrote back to me and West saying,"I liked your post, and agree with you. My point is the term 'ROI' should only be used for financial conversations." 

Is that enough he said/she said?

My point is this: I generally stay away from having opinions. It is my belief that one should only hold—or at least voice—an opinion about things that one is truly educated enough about to explain an opinion without using TV clips of talking heads as a reference or the phrase "one time I read an article about..." Unfortunately, most of the general public doesn't share this belief with me, which is why everyone over 18 gets to vote and why, generally speaking, our critical thinking skills have gone to hell in a handbasket. Since I refuse to argue an opinion on things I know little about, that means that I am wonderfully interested in a thoughtful debate and will happily take in all sides because in the process, I am learning more, and learning more is always good. There are some things though that I know enough about to take sides on—mayonnaise is gross on French fries, the Cubs will never win the World Series, dead Christmas trees make wonderful, if not quick, New Year's Eve entertainment, outdoor showers are neat, and me. I know about me. I know how I feel. 

So when the participants at the Mayo Clinic social media conference were tweeting their way through Boyer's talk and when I saw the tweet quoting Boyer about calculating the value of a patient over time all I can say is this—my heart sunk. 

Disclaimer: Boyer is not evil. Boyer just likes math. 

Boyer is, as I have come to realize, a cog in the machine. He genuinely likes numbers. One of the tweets that came across today from his presentation at Mayo quoted him as saying that everything can be measured and he even kept track of how many downloads there were of his handy ROI worksheet (65). For Boyer, it seems measurement is akin to godliness in that if something can be measured it can be neatly and succinctly broken down into little parts and studied. It can be made to make sense. It will be logical. It will be right or it will be wrong. End of story. Granted, we need people for whom the world is so perfectly parsed. I am not one of those people. I do not ever want to be one of those people. I am the person who is given a set of rules and (nearly) immediately throws the rules out the window. Rules are too stiff of a structure to define my life. Nothing about my life has followed the rules. 

Here's the part where I over-emote and over-share:

If rules worked, I wouldn't be 31-years-old and working part-time because I lost my job when I had a stroke at age 28. If rules worked, I wouldn't be finishing a master's degree with no hope of a promotion or a raise. If rules worked, I wouldn't be one of the extreme few diagnosed with intimal fibromuscular dysplasia, which has no treatment and no cure. If rules worked, all my hard work would have paid off with something more than eeking out a living in a town that my husband and I can't afford to leave. In order to survive, in order to eek out this living, I have had to be fluid. I have had to respond to events as they happen. I have had to watch plans suddenly dissolve into thin air. I have had to readjust everything that I thought would be part of my future. 

I do not say this to complain. I say this to shed light, to be transparent, to perhaps help others who are struggling to cope. I learned to be fluid. I learned to stop keeping track. I learned to let go. I learned to let the path meander. If I attempted to calculate all that I have lost versus all that I have gained, I feel it would be impossible. How can one calculate the cost of lost time, lost potential of a human soul? How can one calculate how that soul has grown as a result of those losses? I lament what has gone. I cherish what has developed. No part of that is clean, neat, and logical, and anyone who tries to say that it does may as well go ahead and share with us the formula for love as well. 

While loss and life and love is not at all what Boyer is talking about when he crunches the ROI numbers, it is what I, as a patient, feel deep in my nauseated stomach and tight in the center of my chest and flushed on the span of my cheeks. Give me a number for that. When it is late and I am alone and I am terrified that I will not have the time, the life to finish the things I feel I must do, give me a number for that. When a friend or a doctor reaches out through a social network to provide some sense of solace  and the Tweet isn't reTweeted, and the blog comment isn't seen by anyone else, and the Facebook post only gets clicked on once, give me a number for that. Maybe I can add all these numbers together and they will increase my value as a patient because I am worried about what happens when a patient's value runs out.

14 October 2011

Rethink Your ROI

A week or two ago I got into a Twitter debate with Chris Boyer, Director of Digital Marketing & Communications for Inova Health System in Northern VA and member of the Mayo Clinic Social Media Advisory Board, over use of the phrase return on investment (ROI) in relation to healthcare. The debate occurred during the weekly healthcare social media chat (#hcsm) and started like this:

@chrisboyer Want to learn how easy it is to measure #hcsm ROI? I detail how@inovahealth is doing it on this Slideshare preso:http://slidesha.re/pgBNbx

@chrisboyer Oh yes! #hcsm ROI has a direct effect on patients and business. They both work well together.

@chrisboyer It's great to know that others are also doing what's sensible for business - #hcsm ROI. Good stuff!

Really, I was okay up until then, but another TweetChatter chimed in.

@joltdude There really is two ROI's involved with healthcare.. the financial one, and the social/altruistic one. Both are important #hcsm

And Chris Boyer said this:

@chrisboyer Wrong there is only one ROI for #hcsm - the financial one. The social/atruistic results are "success measurements." Semantics.

That's when I got pissed.

@AfternoonNapper Semantics are everything. Docs seeing ROI as only financial guarantees I won't be their repeat customer = lower ROI. #hcsm

@joltdude Semantics of bad bedside manner, and disconnect... Patents go elsewhere.. Hows that grab you? #hcsm

@AfternoonNapper Healthcare's financial ROI isn't that I left w/ a happy feeling. It's that I will have my next surgery at your hospital. #hcsm

@AfternoonNapper Invest in good training, good doctors, etc - I get happy feeling & good surgery. I return and I recommend that others go as well. #hcsm

@AfternoonNapper Altruistic/social measures also directly impact my emotional attitude toward your healthcare entity. Bad attitude=you don't get my $. #hcsm

@chrisboyer C'mon, really? Doctors don't have a right to be successful in their business?

@chrisboyer Everyone still remembers that doctors and hospitals also have to run a business, even while using #hcsm, right? Why is ROI so offensive?

@joltdude Of course they have to run a buisness, but if the pts dont want to go there, due to social metrics, you dont get paid #hcsm

@chrisboyer to @joltdude Your response just doesn't make sense. #hcsm

@AfternoonNapper I've never had a pleasurable business experience w/ a doc/hosp. Healthcare business practices are a near total negative. #hcsm

@joltdude The bean counter just doesnt get it does he?

@joltdude The problem is the fiancial issues ARENT separated from the relational ones. No relation = no profit.... Is that difficult? #hcsm

@AfternoonNapper I will never ever say, "Man, they botched my surgery, but they sure had an effective billing office; I think I'll go back there." #hcsm

@chrisboyer I agree our business needs help. But you don't want them to be in business at all? Socialized medicine? #hcsm

@AfternoonNapper The argument is not at all regarding socialized medicine. It's about defining what matters & that isn't just the red line. #hcsm

@AfternoonNapper Also, to clarify - it's not HCSM ROI. It's ROI in general. I'd be a really lousy stock option. #hcsm

@chrisboyer Wow - everyone is so offended by the concept of #hcsm ROI. That's bizarre. I think it's a great thing.

@MeredithGould It's because people collapsing and confusing the financial issues with relational ones.

@chrisboyer That's it!

@AfternoonNapper Still disagree, but respectfully. #hcsm

@MeredithGould If it were part of your job, as mgr of a hospital dept, you'd give a hoot about the financials. #hcsm

@AfternoonNapper I completely give a hoot, and prefer it not be insinuated otherwise. #hcsm

For the record, there were others involved in the overall #hcsm chat, and there were additional tweets that were not part of this conversation regarding ROI; however, I have done my best to distill the conversation within the conversation down to its relevant tweets. In the end I was angry about two things: that it was seemingly incomprehensible how patients could have an effect on ROI; and the idea that since I'm a patient, I don't care about ROI.

If patients don't have an impact on ROI, I don't know what does. How can the consumer of a product not affect that product's bottom line? If we were to all stop drinking Pepsi, would Pepsi not suffer a loss? Granted the company is diversified. Let's say that instead of just stopping drinking Pepsi, we stop drinking all Pepsi products. Then would the company notice? Patients are healthcare consumers. Healthcare providers are selling a product that consumers may either choose to buy, choose not to buy, or choose to buy from an alternative source. The product that healthcare providers are selling is not health. Patients can see a doctor in Maine; patients can see a doctor in Phoenix; patients can see a doctor in Tokyo; patients can see a doctor in Paris. There are lots and lots and lots of doctors. There are so many doctors that if a patient goes to see a doctor and that doctor is unreceptive, does not listen, stares more at the computer than the patient, and provides unsatisfactory care that the patient can go find another doctor. Lest I anger the entire medical profession, doctors are service providers just like our dry cleaners, our mechanics, our piano tuners, our furnace repairmen. If we as consumers receive bad service from the dry cleaner or mechanic or piano tuner or furnace repairman, we find another one. Patients will—and should—do exactly the same with their doctors. No patient who comes into a doctor's office scared and willing to disrobe and bare all truths deserves to be given bad service. Healthcare providers must consider the ROI for the patient who has found the doctor, taken time off from work, sat in a waiting room, seen the doctor for 10 minutes, and been given a solution that may or may not work, thereby potentially resulting in another visit. Doctors indeed can do wonderful and amazing things—for that they deserve respect. But for each doctor who disrespects a patient by failing to provide quality customer service there is another doctor who is willing to provide that service. Patients will find those good doctors. Patients will make those good doctors their doctors and recommend those good doctors to friends and family members. The healthcare organization employing those doctors will see the ROI from growing skills, providing technologically advanced care, and even remodeling that waiting room dramatically increase when there are patients—drawn by quality doctor care—to contribute to the bottom line. And those organizations who fail to provide quality care to patients will see it reflected in their bottom line as well.

As a patient, I care—perhaps more than many healthcare administrators—about ROI because a doctor or hospital's ROI directly impacts my bottom line. If a doctor spends time and money to develop a skill, if a hospital purchases a new piece of equipment, and if the expenses are not recovered in due time, I fully expect to feel the impact on my wallet as a healthcare consumer. In fact, I acknowledge that as a healthcare consumer, I am paying from the start for the new skills, and new machines, and new waiting rooms in any given medical establishment that I patronize. Consequently, in order to lower my personal costs, I need my doctors, hospitals, etc. to get the absolute best ROI possible to avoid passing their debts on to me. I understand that the medical field must progress, and I am okay with contributing to bringing new technologies, more skilled doctors, and overall better service capabilities to my healthcare providers because I will be helped and my community will be helped. However, if we're going to talk about ROI, we must also talk about waste. In the chat above, I reference having never had a good experience with a healthcare business office. I would like to amend that by saying that in the few days since the chat, I've had the pleasure of dealing with the Cleveland Clinic's business office. The employees there are helpful, friendly, and on point. They are everything business office employees should be. And then, they spent $12.32 to accidentally mail me 28 checks that were supposed to go to my insurance company. They wasted the time and supplies it took to create those 28 checks. I imagine they'll spend another $12.32 to mail the checks back out—well, $11.88 because one check actually was supposed to go to me. It was a reimbursement. I imagine they'll pay someone to redo the entire process. I imagine that, at the least, the time, supplies, and money wasted would have paid for someone to have a cholesterol or glucose test, either of which could have life-altering results.

In the end, there must be more investments made for patients not profits.


For clarity's sake:

11 October 2011

Terrible Twos-day: Sinus Infection Edition

The Afternoon Napper has come down with the crud and apologizes for her blog absence. In lieu of the Napper's own words, please accept the following two blog entries from the blogosphere regarding sinus infections:

With props for the most accurate description of a sore throat ever to Carmel Lobello of death & taxes—"Without going into too many details, I have a sinus infection, which comes with a sore throat that makes me feel like I’m gulping wood splinters every time I swallow, a cough which has led me to pull a rib-muscle, and the kind of headache that makes you consider breaking your pinky toe with a hammer just to transfer the pain."

And one really angry guy who saw what patients would refer to as the doctor from hell—"For those who aren’t going to read, bottom line, I had a doctor who ignored her patient’s medical history and symptoms, berated me and treated me with such passive aggressive nonsense that I felt it necessary to write a 2,700 word blog post about it. In the end, I got the prescription I came for."

05 October 2011

Waesuck Wednesday: Breast Cancer Edition

October is Breast Cancer Awareness Month. That's great. Breast cancer sucks, and it is prevalent. According to the National Cancer Institute, "based on current rates, 12.2 percent of women born in the United States today will develop breast cancer at some time in their lives." The American Cancer Institute says, "Breast cancer is the most common cancer among women in the United States, other than skin cancer. It is the second leading cause of cancer death in women, after lung cancer."

Read that again—second leading cause. Do you have a clue when lung cancer awareness month is? Do you know what color ribbon to wear? "Lung cancer is one of the most common cancers. In 2007, lung cancer will account for approximately 15% of all cancer diagnoses and 28% of all cancer deaths. It is the second most diagnosed cancer in men and women (after prostate and breast, respectively), but it is the number one cause of death from cancer each year in both men and women," according to lungcancer.org, a program of CancerCare. The problem is that lung cancer has not had the marketing forces behind it to make awareness of it a global phenomenon. It's not as sexy. It's not pink. A recent USA Today/Gallup Poll revealed that "84% of all Americans including 95% of those ages 18 to 29 now 'shop for the cure,' buying pink products with a breast cancer tie-in." However, some of the pink pushers are coming under fire for how little of the proceeds from pink products actually go toward research—and how much goes toward overhead. This month Marie Claire published a pointed article examining the trend of pink washing and the ugly trend of "charity organizations" and pro-pink items not really supporting the cause. "The fact is, thousands of people earn a handsome living extending their proverbial pink tin cups, baiting their benefactors with the promise of a cure, as if one were realistically in sight," the article reads. More over, the author recommends the following: "Skip the pink-ribbon merchandise. Because no one really owns the rights to what has become the universal symbol of breast cancer (though Susan G. Komen for the Cure trademarked its own version), peddling the logo has become a massive racket, overrun by slick profiteers exploiting the public's naive assumption that all pink purchases help the cause."

Some breast cancer patients have become extremely aware of the effect that pink washing is having on research for the disease—capital gains vs. finding a cure—and the looming presence of breast cancer in the overall cancer picture. The USA Today/Gallup Poll showed that "one in three adults, and nearly half of women under 50, say the intense focus on breast cancer overshadows other worthy causes." Women who are part of the breast cancer social media movement on Twitter loudly echoed this sentiment during a TweetChat on Monday night. Gayle Sulik, a medical sociologist under the Twitter handle @pinkribbonblues and author of a book and blog by the same name, led much of the discussion about the role of pink in breast cancer awareness. "Saw the White House swathed in pink light tonight on Nightly News. Doubt it will be (purple?) for pancreatic cancer," she tweeted. Of the a handful of men participating in the chat—including the well known advocate Dave deBronkart a.k.a. @ePatientDave, registered nurse Andrew Lopez a.k.a @nursefriendly, and an IT/tech guy named John and tweeting as @joltdude—John was the first man to speak out in regard to other cancers, "Nothing 4 nothing, w/ all ths pink, other cancers seem 2 B left out of equation.. including us guys... we get cancer 2... All cancers need to be treated, resolved to the best of our ability. and by only focusing on one, we really do neglect everyone else." To further complicate the issue, awareness doesn't equate action, chat participants said. "People are aware, but many now think all BC is diagnosed early & curable," wrote Dr. Deanna Attai, a breast surgeon in L.A. Awareness of the disease has not made it any easier for those suffering from it. "I am sick of being told I got the good cancer. People are not aware. Not really," wrote blog author and patient Nancy Stordahl. "Sad thing is it's all about the marketing. That's why metastatic is invisible. What kind of lipstick goes with thrush?" asked Jackie Fox, breast cancer survivor and author of From Zero to Mastectomy: What I Learned & You Need to Know About Stage 0 Breast Cancer.

With all the organizations and all the pink and all the awareness, it has felt to me that breast cancer, among other prevalent diseases, gets more than its fair share of attention. For better or worse, we as a culture are fascinated with breasts and what they represent and slogans like "Save the Ta-Tas" is fun and catchy. "One must admit, 'Save the walnuts' doesn't have the same cachet," Dave deBronkard pointed out during the chat. Previously I blogged about having disease envy and particularly called out breast cancer patients for monopolizing pink; however, I found Monday's chat eye-opening and refreshing in its honesty. It had never occurred to me that those in the pink might be tired of all the pink and that the quantity of attention does not make up for the lack of quality attention to the subject. The chat served as one of what I'm sure will be many calls to action for improving and altogether evolving pink's message to one of overall breast health and cancer awareness as a whole. One idea for this is to lend pink to other diseases. Use the pre-established breast cancer networks—which due to the sheer number of those effected are a true community force—to call attention to other diseases by letting them go pink. The goal isn't to necessarily keep straight what pink represents each month or each week but to get people talking about their health. While pink may have well accomplished its goal of awareness of breast cancer, people are not as aware of so many other serious diseases such as my own disease—intimal fibromuscular dysplasia. In exchange, those of us who want to support those with breast cancer will do something real to help. We will push for research, but we will also be there to do with the stuff that no pretty color or twisted ribbon can really do—we'll listen, we'll let you talk about something else altogether, we'll hug, we'll let you be angry, we'll let you cry, we'll help you celebrate, we'll let you be tired, we'll drive to doctor appointments, we'll make something other than another damned casserole. No matter what the disease, no matter what the outcome, the experience is exquisitely human, which is what we all are.

04 October 2011

Terrible Twos-day: Twitter Edition

I've been on Twitter too much lately. It's the result of neuroticism on one hand and inefficiency on the other. I want to know what's happening even though it doesn't involve me. I'm afraid I'll miss something important that does or does not involve me. I'm sure there are better ways to cull the information, but I haven't learned them yet, so for now I'm simply compiling a great big list of links to visit later, which I'll probably never visit or will visit six months from now when they'll be irrelevant. It's hard work this keeping up and staying in touch.

And while Twitter is a new fangled type of great communicator, it is also an old fashioned time waster. Remember how once upon a time boredom prompted Googling of random words just to see what popped up? Now that same concept can be applied to the Twittersphere. Search for a random hashtag or key word and see what other people have to say about it. There's always humor to be found. And so, the AfternoonNapper brings you this Terrible Twos-day: Twitter Edition, Keyword "Two" — Real Tweets from Real Tweeps.

Luce Cannon
Two asians can't have a caucasian child... Because two Wongs dont make a White

Milo Berger
Two things in life where you get what you paid for = toliet paper and car phone chargers

Watchin two ppl play catch w. cement bricks while living in a glass house. ...wash yo hands before u start pointing them sticky fingers boy.

Andrew Izek Carrillo
About to buy two gold fish and name them Cosmo and Wanda.

Steven Amiri
Babysitting my friend Derek's kids. Put season two of Breaking Bad on the TV and gave them soda. Derek's more of an acquaintance.

Bob Brigham
I'd normally be opposed to a remake of Footloose, but with two Mormons running for President, maybe we need a reminder.

bryan mason
Guess who has two thumbs and doesn't have to worry about making payroll for the first time in a decade? THIS GUY!!

Wil Shipley
What has two lightsabers and is more machine than man?

The Octo-Mom got a twitter??? If so, tell her I'm trying to claim two of her kids on my taxes!

TJ Alley
Just popped two Viagra and depending on how long it takes this Ambien to kick in either my wife or my pillow is having an exciting evening.

Paul F. Tompkins
Everyone at my gym agrees: the best place for two people to have a conversation is in a doorway!

george parros
two days in finland and I have yet to eat any form of reindeer...i am so disappointed in myself

02 October 2011

Give What You Get

"If you're going to leave me, I'd rather you go ahead and do it now."

I was 24 when I told my then-boyfriend these words. Altogether, we had been a couple for nearly six years, having met through mutual friends, spent our college years together, then, after my graduation and subsequent move for a job five hours away, entered a year attempting a long-distance relationship that crumbled. There was a year apart. I moved for a different job, somehow managing to be five hours away from the old job and still five hours away from the guy. Nonetheless, we found ourselves back together in May 2004. We tried to overcome our past, but the fact of the matter was that while we had both changed, we had trouble recognizing that in each other, so it was no great surprise that by winter we were both looking for an easy way out. And then I got sick.

Really, I'd been sick for years, but things had finally come to a head when an incident at work convinced me that I had to get my high blood pressure under control. I'd been having several unilateral headaches on my left side, which I dismissed as stress and heredity. While at my computer one such headache suddenly turned into a dizziness and a numb left arm. The feeling passed, but it got my attention—if I didn't do something about my blood pressure, which had peaked at 220/110 and tended to hover around 190/105, I was going to have a stroke. Since I had recently graduated and moved and then moved again, I confess that I hadn't been as on top of my blood pressure as I should have been. My doctor at student health had taken me off a few meds and put me on a few others to no avail. A doctor I saw while working the out-of-state job did the same. My blood pressure didn't budge. So when I showed up in my new family practicioner's office he recommended something else, "There's something really strange I'd like to have you tested for." I went for an MRI and the strange thing was found—the artery to my left kidney was more than 90 percent stenosed, which meant that the kidney was not getting an adequate blood supply and therefore was emitting renin to raise my blood pressure to try to force blood to the little dying organ. What the MRI also found was that my celiac and mesenteric arteries were 100 percent occluded. We didn't know why, but suddenly the severe gastrointestinal problems I'd had for years on end suddenly came sharply into focus. The arterial blockages were killing my system, and if blood supply wasn't restored, I stood a great chance of a) losing my kidney b) suffering complications from high blood pressure including a weakened heart c) losing my bowel. I was referred and then referred again. There was talk of a vascular disease. There was talk of major surgery.

And finally, there was talk of breaking up. I knew two things: I needed to pay attention to myself and not a shoddy relationship, and if I was going to get out of a shoddy relationship, I wanted to do it before things go ugly, before things got to the surgery and recovery and scars part. It was shortly before Christmas that I said, "If you're going to leave me, I'd rather you go ahead and do it now." And so he did. My parents went to my doctors appointments with me. I spent most evenings at their house, only driving home at 11 p.m. to feed the cats and go to sleep. Bypass surgery was put on the docket for July 5.

I hadn't really had much of a mind for dating. My situation was serious, not the kind of thing to throw at a new relationship, but there was a guy, a friend at work, to whom I had become close. We hung out from time to time, going on "not dates." He had never ever tried to make a move on me. I never made a move on him. Instead, we were just friends—blushing, awkward friends. The night before I was to leave for surgery, I was nervous and alone. I called my "just friend." "Talk to me," I said. "I don't care what you talk about, just talk to me." Three or four hours in to the conversation, I couldn't take it any more. "Travis, why don't you ever hit on me?" There was a long pause. "Well, I will if you want me to," he replied.

Travis came to see me in the hospital, which was three hours away. The surgery had been eight hours long, and afterward, I spent a foggy two, maybe three, days in the ICU. When I finally got to a regular room on the vascular floor, I hadn't eaten in days, hadn't had solid foods in a week, was unshowered, unshaven, and generally looked like a meat marionette held up by IV lines. I think he got to stay for 45 minutes before my meds made me sick and I threw him out of the room.

After two weeks in the hospital, I headed back homeward, but was too weak to live alone. I stayed with my parents for nearly a month. In that time, Travis and I resumed our hours long phone conversations. He came over to my parents' house and took me out for dinner and a movie. And still, he was perfectly, annoyingly polite. Without going into great detail, I'll say that on Aug. 13 I took matters into my own hands. The relationship was everything I'd never had before. We were married just over a year later on Oct. 20, 2006—this month we celebrate our five year anniversary.

In that five year span, Travis and I have gone through a lot with my health. There was the stroke, and the nephrectomy, and the four brain aneurysms, and the gastric rupture. We've gone through a lot in life. I made him let me get a dog (in addition to our three cats), we sold my townhouse and bought a bigger house, I lost my job after the stroke, I went back to school, I started working again part-time. Throughout it all, he's been stoic. He's been by my side. He's sponge bathed and cut up food when the IV in my hand won't let me and changed bedsheets and packed wounds with gauze and driven me to appointments and filled prescriptions and brought chocolates and held me while I cry and nagged me to do my physical therapy and has never once showed any signs of leaving. I don't know how he does it. Sometimes, I don't know why he does it. It would be so much easier for him not to. It would be so much easier for him to close off and close up and want nothing to do with me and my sickness. I try to give him as much as he gives me, but I know that that is impossible.

A lesson that sickness has to teach us then is that in sickness we must not always focus on that which we lose; we must look to what we gain as well. I gained a husband who is my joy, my solace, my caregiver, and my love. I also have gained a community in which fellow patients serve as caregivers, supporters, and friends. I have gained insight into myself, what I want to accomplish in life, and what is truly important and worth fighting for. I have gained experience and knowledge. When there is so very much to be lost and so very much that has already been lost, searching for what one has gained may prove difficult, but it is what we gain that fuels the fire to carry on.

Dissing Ability

Whether in odds or evens, flights, or cases, stairs divide the cans from the can nots. When I was discharged from the hospital, misdiagn...