Compliance

Lately I've been thinking a lot about how health care workers perceive their patients. Particularly the undesirable ones, the ones we blame for being sick. I know we do it; I'm guilty of it. The heart failure patient who is readmitted a few times a month when her edema becomes so severe she has difficulty breathing but who doesn't take her medication because it makes her pee too often. The asthmatic patient frequently seen in the emergency room for shortness of breath who refuses to get rid of the cat he's severely allergic to. The diabetic patient whose family smuggles donuts to him WHILE HE'S STILL IN THE HOSPITAL. I get so frustrated! If these patients would only be COMPLIANT!!!

But look at all these examples: Would you want to take medication if you knew you were going to have to get up 3 times in the night to pee? What about the cat who is the asthmatic patient's only companion? Would you say good-bye to your best friend just because a doctor told you to? Even the diabetic patient who eats donuts while still in the hospital and seems to be the most self-defeating of all: How would you feel if you contracted a disease that meant you had to completely change your way of eating and give up most of the foods you derive pleasure from?

But we get frustrated, blame them for not changing, send them home, and groan when we see them come through the doors again.

In nursing school we were taught to continue telling these patients that they need to change their ways. Even if they've already heard the same words over and over, we're told that "if we continue to repeat the message, maybe one day they'll get it." Does anyone really think that any of these patients are going to wake up one day and say "Gee, maybe I should _________ like my doctor/nurse/nutritionist told me and then I'll get healthy."

Every time I go to the dentist, the hygienist tells me I need to floss. I've been receiving regular dental care since I was a child and have been told this at every dental appointment for over 30 years. I know I need to floss. I don't hate flossing. I just never think to do it. I leave every dental appointment with good intentions; somehow this time will be different. Not once has a hygienist offered me any practical solutions to get into the habit of flossing. When I ask for suggestions, I'm met with "You just have to do it." I'm sincere in my desire to become a flossing person. It's just that no one has ever guided me in developing this habit and I can't seem to figure it out on my own. To the hygienist, I must appear like a lost cause, a very noncompliant patient.

Maybe no one has come alongside all those noncompliant patients and helped them solve their unique problem that would help them manage their chronic illness. What if Heart Failure had her dose adjusted so that she was taking her medication at intervals throughout the day and her fluid was restricted close to bedtime? Perhaps she could sleep through the night AND maintain an appropriate fluid balance. Asthma could be assisted in finding a new home for his companion where he could continue to visit when his disease is well-managed. Diabetes could be reassured that an appropriate change in diet doesn't mean that he can never have a donut again; a home visit with a nutritionist where his lifestyle and personal preferences are considered and a personal nutritional plan is developed could go a long way to helping him make sound nutritional choices more often.

That's not how we do things, though. We print out the generic heart failure/asthma/diabetes home-care instructions, circle a couple important points and say good-bye to the patient--until the next admission.

This is not the kind of nurse I want to be. Instead of reminding the patient that they need to make changes, I want to come alongside them, discuss barriers to health-enhancing behaviors, and help my patients overcome those barriers. Nagging doesn't work. Let's get down in the trenches with our patients and help them find a way to be healthier.

Now I need to go floss.

Warning! I'm in a pissy, whiny mood and feeling quite sorry for myself.

Last night I went to see a movie with my sister. State of Play, a political thriller. About 15 minutes into the movie, just as the congressman and the journalist meet face to face for the first time, I had to leave to use the bathroom. (That's the polite way of saying that my stomach hurt bad and I knew I had only a short time to make it to the restroom.) I returned to the theater about 10 minutes later but knew better than to sit down as I would probably have to leave again. This time I was able to stay for about 5 minutes, long enough to learn that two apparently unrelated characters had a connection to each other. Looking like a really great movie. But I wouldn't know because I spent most of the first 45 minutes of it in the bathroom, gripped by severe abdominal pain and pooping liquid.

I should have known this might happen and not even tried to go to a movie, especially not one that requires you to actually watch the whole thing to know what's happening. I know that I need to sit on the aisle in case I need to get up to leave. I gauge how I feel before I take my dog for a walk that will take me far from the nearest bathroom.

No, I don't have colitis or IBS. What I have is the side effects of a medication that is supposed to regulate my blood sugar. It doesn't appear to be having any effects on anything except my bowel.

I have diabetes and right now I'm really pissed about that! I'm doing the things I should to control my blood sugar but it continues to climb. So my doctor added in the dread drug that causes the diarrhea, metformin. I've taken it before and stopped because frankly, it's difficult to swallow a pill you know will likely give you severe diarrhea and associated cramping. Usually the side effects pass, but never completely. I've been back on this medication for about 3 weeks and the diarrhea is subsiding. A bit. I leave in 4 days on a roadtrip with my daughter. I'm intending to continue taking the medication while I'm gone but I'm not sure how practical that will be. I'll have to see how it goes. I really want to be "compliant" with my treatment plan to see if it makes any difference in the numbers at my next check in 2 months.

I think I wouldn't mind the side effects so much if I thought my numbers were improving. But, each time I poke my finger, I see little, if any, difference in the number staring back at me. But I keep taking the diarrhea pill in the vain hope that when I go back in a couple months, I'll see a difference in the number that matters, the A1C (a measure of blood sugar control over the past 3 months). I'm specifically trying to not make any other changes to my lifestyle that may affect my blood sugar during these 3 months; I want to know if the metformin actually has any effect on my blood sugar. If the number improves, I want to know it's from the medication, not assume that but know it could be related to dietary changes or increases in exercise. If metformin doesn't do anything positive for me, there's no sense in putting up with the side effects, right?

Back to the movie: My sister graciously suggested that we leave when I finally returned to my seat. I had missed too much to ever figure out what was going on. We stopped at the customer service desk and got a refund. I'd like to try again. But I'm afraid the same thing will happen again. I guess I'll just wait for video.

(I warned you I was feeling sorry for myself!)

20 Years Ago - June 7, 1989

Today I drove my mom to the cemetery where my dad is buried. Strangely, there was little emotion surrounding the day for me. I was actually more interested in looking at the gravestones of other long-gone family members and the names of people from the small town where I grew up.

He's been gone for 20 years. She kept saying, "Wow. Twenty years goes by fast." It does and it doesn't. I can remember the events of that day as clearly as if they had happened last month. On the other hand, in that time I have gotten married, obtained two college degrees, and become a mother. The world has seen two Bushes, a Clinton, and Obama as President, two wars in Iraq, and a rise in global terror. Organic food has become mainstream and the Mariners went to the playoffs 4 times (Dad didn't live to see them even have a winning season).

June 7, 1989. He was 43. My parents had been married not-quite 23 years. I was 19. I've now been without a dad for more than half my life. I'll catch up with him in a few years. Mom has lived as much time without him since he died as she did before they were married. In a few more years, she'll have lived as a widow longer than as a married woman.

These are just the numbers. There is so much more to say that I just don't have the energy for today. About the words and the voice etched into my mind forever telling me that he had died; losing my mom when a part of her died that day; never getting to know my dad from the perspective of an adult; watching my 7-year-old sister grow instantly into a little adult, thinking she was responsible for caring for my mom. The list could go on. I hope I have the energy over the next couple of weeks to write about these things and others.

But for today, I'll just note that it's been 20 years.

Remembering

A friend's blog entry about Memorial Day left me with tears in my eyes.

On a trip to Europe while in high school, I visited the American Cemetery in Luxembourg. At the time, I was mainly impressed with the way all the headstones lined up and that Patton was buried there.

Now, just thinking about the cemetery brings tears to my eyes. I think of the young soldiers who gave their lives to protect my freedom. I think of the families who received a visit to their door or a telegram telling them they'd never see their son/husband/brother again. The bodies that lie below the headstones in Luxembourg were buried across the world from their homes.

20+ years ago, when I saw the symmetrical lines of the headstones, I was reminded of orchard plantings. Now whenever I see an orchard, I can't help but think of lines of crosses, each representing a fallen soldier. I try not to take their (and their families') sacrifices for granted. One day a year hardly seems enough to honor these heroes.

Happy Anniversary!

A year ago yesterday was my first blog post. I started blogging hoping to escape crippling depression. For most of the year, I blogged occassionally, when the whim struck.

I'm not stable on my antidepressant and would say that I'm no longer clinically depressed. By no stretch of the imagination am I always happy. But that's to do with real feelings, not chemicals misfiring in my brain.

So happy anniversary to me and my blog. I'll keep writing and see if I can't find more happy days than sad.

Wired

I am sitting at Starbucks, connected to wireless, listening to my iPod, with my cell phone sitting on the table next to my computer. Since sitting less than 10 minutes ago, I have checked my phone for new email and texts (I've received both in that time), updated my facebook status, and checked the weather forecast.

One of my favorite bloggers posted today about the drain that she is feeling from the influence of technology. I saw myself in her post much more than I care to admit. These devices that can be such aids to daily life are becoming the master rather than the assistant.

It doesn't seem that long ago when only a few people had cell phones. Or when AT&T came out with a cordless phone giving you power to wander around the house while talking on the phone. And phones with actual DIALS! Heck, I can remember when everyone had a party line. Anyone else remember party lines? When I went to college, only the rich kids had computers and no one had email. Who, other than a few computer geeks, had heard of the Internet? Now my (supervised) 9-year old has a computer, an email account, and a blog.

What a would an unwired existence look like in today's technology-filled world? (I don't mean wireless--everything is wireless these days!) Do we really need instant access to everything? What would happen if I turned off my cell phone for a day? Didn't look at facebook for a week? didn't check my email ever again? I don't know how to untangle myself from this addiction. Like Midlife Midwife, I feel like a slave to the technology.

It's a double-edged sword. The convenience of instant information makes life easy. Today I registered my daughter for summer camps, paid bills, and read the New York Times online. This was much easier than doing things the un-wired way: stamps, phone calls, newsprint on my hands. Technology is such a time-saver, right? Except that when I was done doing these things, instead of doing something productive, I headed over to facebook to catch up with some friends and followed link after link until I realized that what was supposed to be a quick look at facebook had turned into two hours of mindless surfing. I only stopped because it was time to get L from school.

Carrying my phone with me means I'm available in an emergency. It also means that people can reach me wherever I am, even if it's not an emergency. I recently stopped wearing a watch when the battery ran out and I decided not to replace it. I like the feeling of not being as time-bound. A large part of me wishes that I could simply not recharge my cell phone the next time the battery runs out.

For better or worse, these devices are here to stay. I know I won't stop paying bills or registering for camp online. Nor will I stop carrying my cell phone whenever I'm away from my daughter. But I hope this awareness of how technology is taking over my time will help me to put technology back in its rightful place: my assistant instead of my master.

Sick? Or Tired?

Today when I picked L up from school, she told me she wasn’t feeling well, like she was going to throw up. Tuesday is ballet class day. There’s only 3 weeks left before the dance spring performance and her entire class will be effected if any of them miss practicing together. Missing class today was not an option, unless she was truly sick. We have about 45 minutes at home before we have to leave to get to ballet class. So we went home and I fixed her favorite snack and had her change into her leotard and fix her hair. I proceeded as though we were going no matter what. Of course, by the time it was time to leave, she had eaten her entire snack and was bouncing around the living room. When I asked her if she was feeling better, she said “I still feel like I’m going to throw up.” I figured that a bouncy, hungry girl was just fine to send to ballet.

This incident brings up a few issues for me.

• Why is it that she seems to not feel well every Tuesday afternoon? She seems to love ballet and has plenty of friends she only sees at ballet class. But she never seems to not be feeling well on Thursday afternoon, the day she has tap class. Does this mean that she doesn’t like ballet? Earlier in the year mentioned that it was getting hard. I told her that’s because she’s getting better and she’s going to be learning harder and harder things.
• I get to decide when I feel like/want to go to my classes. This week I’ve been fighting a nasty cold and I got bit on the hand by my dog. The day after the dog bite, I didn’t go to Pilates because I was still in a lot of pain and didn’t think I could do the arm work that involves holding a strap. Because there is an 18-hour cancellation policy at the Pilates studio, I already cancelled my class for tomorrow morning because I’m not sure how I’ll be feeling tomorrow morning. I suppose I can go anyway if I wake up in the morning and feel okay. Would I have cancelled these classes if I held myself to the same standard I hold L to?
• When I told L she had to go unless she actually threw up, she called me the worst mom in the world. I’m used to such pronouncements so this didn’t bother me. Is there any way to help her see that I don’t make these decisions willy-nilly? Two weeks ago during her ice-skating lesson, she fell and hit her head hard. She came off the ice crying. I immediately helped her out of her skates and hurried her to the car, where I called our doctor to see if she needed to be evaluated in the emergency room. The next week, she fell again, this time landing on her hip. Again, she came off the ice crying. These tears were different, less urgent. I comforted her for a few minutes before sending her back out on the ice. A man who doesn’t know us well said something to the effect of me being a hard-ass to make her go back out. Another mom who knows us through skating defended me saying that she was fine this week, whereas the week before she wasn’t necessarily fine. Somehow my mom intuition tells me when things are serious and when it’s time to “buck up” and keep going. Today seemed to be a “buck up” kind of day.
  

I’m sitting in the car outside the dance studio, watching the class. L is bouncing around and smiling with her friends. She seems to be feeling just fine. After class, I’ll ask her if she’s glad she went. I’m pretty sure she will be.