Is There a Healthcare "High Road" When You Are Chronically Ill? #NHBPM

Lately I've been wondering if there really is a "high road" when it comes to dealing with the health care system when you live with chronic illness, especially in light of all the problems that emerged during my recent Hepatitis C treatment at the UCLA Health System.

What is the "high road?"

high road

n. 

1.	a.	The easiest or surest path or course: the high road to happiness.
	b.	The most positive, diplomatic, or ethical course.
2.		Chiefly British A main road; a highway.

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.


In light of what the words "high road" mean, I can say with certainty that my Hep C treatment didn't follow this path!  So naturally, my next question was "Well, why didn't it?"  After much contemplation, I now think I understand "why not."  Ironically, the answer is in the name of my medical care provider network of choice: system.

What Is a System?

At its core, a system is an organized, purposeful entity that is made up of many interconnected and interrelated pieces.  In health care, some of these pieces include: doctors, nurses, allied health professionals, administrators, insurance companies, health care professional licensing boards, pharmaceutical companies, medical technologies, office space, information technologies, politicians and the government.

The people who are part of the health care system are bound by a mission and specific set of beliefs, principles, goals and objectives, procedures, methods and routines.  Within the system there is a unique culture with norms for social conduct, tiers of hierarchy and privilege, boundaries determining who is in and who is out of the system, standards for conflict resolution and mechanisms for how feedback is solicited, received and processed.  People carry out specific activities, perform certain duties and solve particular problems that fit with the mission and goals of the health care system.

So Where Do We Fit in the System?

In the simplest of terms, we are community members who are sick or injured and enter the system as "patients" to receive medical care so we can be restored to health and return back to the community.  To us, health care is a collection of services given to us in an effort to change our state of health.

Another way to look at this is that patients are inputs into, and healthy people outputs from, the health care system.

Which is where I think the problem arises for those of us with chronic illness.  We are not simple inputs.  We present with a persistent state of illness, with health problems the system can't cure and often has trouble diagnosing.  At best, it can only manage our health; at worst, it throws its hands up in frustration and resignation because we just don't leave the health care system as a successful output. That's because the health care system:

• hasn't figure out an appropriate model of care for us that meets our unique needs
• hasn't expanded its definition of  health to include concepts like quality of life and palliative care which is what we are seeking

So if health care is a system, and we patients are the inputs and outputs of that system, what might the high road in health care look like?  Let's go back to the definition to try and answer this question.

The Easiest or Surest Course

Based on my experiences in the health care system, here is what I think the "easy and sure" health care high road looks like:

• patients accept that doctors and other health professionals in the system are the experts
• patients present with medical conditions the doctor can easily identify with diagnostic tests
• those medical problems can be treated and cured with existing medications or procedures
• patients are compliant with medical treatments and instructions
• patients have medical insurance and/or cash on hand to pay medical bills
• patients leave the health care system healthier than they entered it 

I think we can all agree that we have, at some point, tried to follow this path.  In fact, when I first became chronically ill, I really, really wanted my doctor to find something wrong with me that could be diagnosed AND treated successfully.  But alas, I don't have conditions that can treated and cured, only ones than can somewhat managed, an outcome me and many of my doctors aren't entirely happy with.

So no, I don't think an "easy and sure" path through health care exists for persons living with chronic illness.

The Most Positive, Diplomatic, or Ethical Course  

O.K., let try again using the alternate definition.  Despite my long 24 year history with the system, I'm not quite sure what health care thinks is "most positive, diplomatic, or ethical," so I am going to take the liberty of defining these variables myself:

Positive

• educating myself about my chronic health problems so I participate in my health care as an empowered, engaged, equipped and enabled patient
• accepting that my doctors may be limited in terms of what they can do for me
• giving balanced feedback about what is and isn't working for me in regards to the care I receive

Diplomatic

• using active listening skills and working to build a successful patient-provider relationship
• reminding my health care providers about all my chronic conditions
• letting my doctors know about my other health providers, what I see them for and what treatments they provide me
• asking for a second opinion or referrals when a doctor doesn't seem to be able to help me

Ethical

• rejecting substandard medical care and watching out for medical errors
• reporting problems and giving feedback to the health care system
• being a participant in my medical care and exercising my right to have the final say on all medical decisions
• asking for reasonable accommodations as afforded to me by the Americans with Disabilities Act 
• affirming my right to appropriate medical care so I do not suffer needlessly

Wow, that feels much better!  And I am happy to say I have definitely taken this high road and this is definitely the way I want to continue to approach my ongoing healthcare.

I also learned that someone who embraces this viewpoint actually has a name: they're called an e-patients.  I found this article over at ClinicalPosters.com--How Empowered Physicians Can Embrace e-Patients--which discusses in-depth this new category of modern patient.  You'll also be encouraged to know that the Society for Participatory Medicine thinks we e-patients can help heal the healthcare system.

That said, my personal experiences suggest that that the health care system as a whole isn't ready for communicating with e-patients just yet.  Neither does respected physician blogger Kevin M.D. 

But that isn't going to stop me from continuing to travel down this high road.  Maintaining what remains of my precious health is so much more important to me than conforming and letting the health care system squish me like a square peg into a round hole.

That's because I am an optimist...and a fighter, despite the myriad challenges. I believe what Dr. Howard Richards says:

The phrase "fighting the system" alludes to the old folk saying "You can't fight the system." This saying expresses an intuitive sense that whoever wins, whoever loses, whatever group or class wins, whatever group or class loses, the system always wins. The system has remarkable endurance; it successfully defies attempts to change it, and it punishes those who try. Nevertheless, I am saying, you can fight the system if you know enough about (it).

Now that we all know a little more about the nature of the health care system, we can all be encouraged to fight on, not just for healthcare transformation, but for a healthcare revolution that embraces new ways of thinking about health and medical care and replaces the existing norms with more principled and progressive thoughts, ideas and actions.

That's my opinion.  What do you think?

Wordless Wednesday:Fortune Cookie Says... #iiwk2011

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A Spender Becomes a Saver

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I should start by saying I am writing this post amidst a pretty big headache. Common sense says I should just come back and do it later, except I am stubborn and want to make sure I keep up with my blogging schedule. Plus Tuesday doesn't really have any "later" time in it since I am going to see the doctor today...

Why do I have a headache?

Seems I spent too much of my energy Sunday. Sure, I got several things done, but I have clearly been paying the price for this Monday. For starters, I woke up really tired. Then I got really frustrated at Robert and would have cussed him out if he hadn't been at bowling last night. Dinner was late because I dropped the marinade for the roast chicken and it splattered all over my clothes, shoes and the floor. Now I have a BIG headache...

So in the end, doing too much on Sunday was not a wise expenditure.

Seems that my energy isn't the only thing I have been saving lately either.

Before I became disabled and unable to work, I had a career and a job. My husband and I were DINKs: dual income, no kids. When it came to making purchases, we never really gave anything a second thought because we were comfortable financially.

That all changed in October 2004. To add insult to injury, all the disability benefits I was supposed to be entitled to through my employer seemed to vanish into thin air. Sure, I get Social Security Disability, but that wasn't supposed to be my sole source of disability income.

That meant that we had to make some big changes in our spending habits.

It hasn't been an easy transition, but it is one that definitely parallels the adjustments I've made to accommodate my physical condition. Yes, it seems that chronic illness has changed me from a spender into a saver. Just one more example of another skill I get to practice courtesy of my current condition.

I have a feeling I'm not the only ChronicBabe that has had to learn to save instead of spend ... which is your cue to share your story with me.

Learning to Have a Mature Relationship with My Mother

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So if you have been reading along this week, so far I have told you about my siblings who choose not to talk to me and our mother who promoted discord and unstable relationships among the four of us growing up. I've talked about how, on my mother's side of the family, there is a multi-generational history of emotional cutoff. Then I admitted that, without the cooperation of my siblings, I am unable to stop this cycle from continuing.

So today I'm going to talk about how I grew up and learned to have a mature relationship with my mother BEFORE she died. That's right, I figured out a way to interact with her that didn't leave me depleted, angry or feeling like she had taken advantage of me. I actually was able to successfully interact with her AND feel good about it.

How did I do this?

It started in 1995 when I took a vacation from my family for a year and a half. I flat out told my mother that I needed to figure some things out for myself and didn't want to talk to her for a while. I didn't change my number or my address so my parents knew how to get a hold of me, but I also didn't encourage my mother to contact me "if there was an emergency" because she clearly didn't understand what the word emergency meant.

I spent that time getting to know myself and who I was. I looked at the mythology my family created about who I was and decided I wasn't buying into it any more. For example, my mother frequently said I was selfish and self-centered and, after careful consideration, I decided that wasn't an accurate description of myself. I went through every aspect of the mythical Selena, compared them to the real Selena and came to the conclusion that my family just didn't understand me.

Rather than be angry or upset, I decided to just try to accept this as fact. After all, up to that point, I had spent 30 years trying to demonstrate that they had it all wrong, trying to get them to see the real me. I gave up on seeking my family's validation and approval. I embraced the fact that I was an adult and could do whatever I wanted to do and it didn't matter what my family thought or how they judged me.

I also recognized that many of my family's judgments, criticisms and rejections were steeped in emotionality. So I decided that I was going to try and avoid getting caught up in the emotional tornado of bitterness, unhappiness, shame, hysteria and anxiety that swirled around my family. I worked on adopting a calm, cool and collected stance so my thinking and behavior could be rooted in a careful consideration of the facts.

Then came the big test.

December 1996 I got a Christmas card from one of my sisters saying "Dad really needs us now." So I went to go visit him when my mother was at work and immediately could tell he displayed cognitive deficits indicative of Alzheimer's disease. I decided my vacation was over and I needed to be involved with my parents once again. But instead of allowing myself to get sucked back into old patterns of behavior, I started setting limits with my mother.

In the past, my mother sought me out when she wanted me to do something for her. So I started by reminding myself that this was HER husband and it was HER responsibility to care for him, even though this was my dad and my heart yearned to take care of him myself. This time, I gave her the information and referrals she needed so she could take care of HER husband HERSELF. I would support her and my dad, but I wasn't solving this situation for her.

I worked on not letting her hurt my feelings when she said something objectionable. I worked on being open-minded when she spoke, listening instead of formulating a comeback to her opinions. I worked on controlling my temper. I worked on being clear about my limits and what I was and wasn't willing to do. I worked on being compassionate, not critical of my mother. I worked on accepting that I couldn't change her thoughts, feelings or actions, only my own.

It's amazing how other people respond when you change.

It wasn't all that I wanted or hoped for, but we somehow were able to get along better. I made choices about what I was going to do and didn't succumb to pressure to do more. I acted thoughtfully, in the best interest of myself, my husband and my parents (in that order.) I sidestepped the emotional tornado and didn't get caught up in the panic, fear, hostility or guilt. I could disagree with her and it just wasn't a big deal anymore. I focused on just being ME, without worrying about having to justify or defend myself.

When my mother was diagnosed with colon cancer a month before my wedding in 1998, I didn't postpone our plans. I did everything I could to be there for her during her illness and took care of my dad when she was gone. We never truly resolved our differences before she died, but I did go and say goodbye to her. I don't have any regrets. I am confident I did everything a good daughter would have done to help their dying mother, which in turn gives me peace of mind as I move forward with my life.

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Life Lessons: Letting Go of Maladaptive Coping Mechanisms

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When I was growing up, I learned to use food to deal with the the bad things that happened to me. I learned this coping mechanism from my grandmother, with whom I shared a strong, loving bond. You see, my grandma was an outstanding cook. She loved me with her every day comfort foods and her wonderful holiday meals, full of luscious homemade sweets and satisfying carbohydrates. My last memory of my grandma before her death is of her offering the 16 year old me a bowl of ice cream to console me after a huge fight I had with my mother.

My mother, on the other hand, was a horrible cook. She also had an unhealthy preoccupation with weight. My mother obsessed about how much relatives on my father's side of the family weighed, which translated into her overreacting when she perceived that me, my brother or sisters were gaining any weight. Genetically speaking, my father's side of the family tends towards individuals being heavier, and there are members of that side of my family who are overweight or obese. However, when I look at pictures of myself during childhood, I do not see a child or teenage that was overweight or obese. Yet I remember going to see a nutritionist when I was in high school and for the life of me I have no idea why.

I think as a child you use what you know to get through the tough parts of childhood. I grew up with an abusive mother who triggered abandonment issues in me--fear and stress instead of love and bonding. I used food back then to soothe and feel better about myself. In retrospect, it wasn't the most healthy or life-affirming way to deal with my feelings, which is why as an adult I acknowledge that food was a maladaptive coping mechanism. But I can't fault my childhood self for figuring out a way to deal with some pretty untenable situations created by the adults in her life.

Here is the thing about maladaptive coping mechanisms learned in childhood: in times of stress, emotional upset and adversity, they are the things your grab for first to help you cope in adulthood.

When I was diagnosed with cancer at age 22, my mother and my family once again disappointed me with their lack of love and support. It was then that a caring nurse suggested I talk with a mental health professional. Fortunately for me, in that time of crisis, I was willing and open to trying a new way of coping. I went thinking that I was going to talk about how cancer ruined my life and my relationship with my family. Instead, I found a safe place to talk about all those strong emotions I was avoiding with food.

In my case, I loved my grandma more than any other adult in my childhood. Her death when I was 16 devastated me. My lack of love and support from other adults in my life to help me process my grief and loss after her death only reinforced my reliance on food to help soothe and comfort me. It was, after all, something my grandma and I bonded over. And yet, as I discovered in adulthood, it was her love that nurtured the seed of my self-esteem. As my self-esteem grew through my work in therapy, so too did my determination to reexamine my coping styles and choose more healthy ways to deal with adversity as an adult.

And I get to practice these new coping mechanisms a lot because there certainly hasn't been a lack of adversity in my adult life...

A lot of years in psychotherapy helped me learned to substitute food with other, more healthy and helpful ways to deal with strong emotions. That is, for the most part. Then being diagnosed with type 2 diabetes in 1999 pretty much changed my relationship with food. Overeating wreaked havoc on my blood sugar and my homeostasis resulting in strong, unpleasant consequences that counteracted any brief, temporary benefit overeating offered. Which has reinforced in a big way that eating couple of chocolate chip cookies is O.K., but eating the whole bag of cookies only insures a world full of hurt afterward.

I mention this today because I know someone who is struggling with her own maladaptive coping mechanisms and is having a rough time of it. She is in her twenties, and probably much like me at that age, she thinks that there is something wrong with her because she continues to use her maladaptive coping mechanisms. The thing is, there isn't anything wrong with her. I know this because I now understand more about human behavior. If these maladaptive coping mechanisms didn't work at all, we wouldn't repeat these behaviors over and over again. We learn to repeat what works, even if it only really helps a little or creates the illusion of a solution. Which means changing our behavior to something more healthy, something different, is inherently difficult.

We all have our issues growing up. We all develop ways of coping with the world when we are young. The wonderful thing about being an adult is that we get to reexamine these coping mechanisms, decide if they still work for us and, if we want to, we can choose to change and replace them. Sure, it is hard work. But over time, I found the reward of feeling better about myself trumps holding on to something that doesn't really work for me anymore.

In her own time, I hope my friend discovers this for herself too.

One Damn Thing Over and Over

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It’s not true that life is one damn thing after another; it’s one damn thing over and over.


~Edna St. Vincent Millay

Robert reconnected with a high school friend over the weekend. They spent a good two hours chatting over AIM. From their 'conversation' I learned that his friend is taking care of her mother who has dementia. Immediately my heart went out to her. Then she shared her troubles with her siblings and I found myself nodding my head and saying to myself, Yup, that sounds familiar. The conversation made me think that she and I are living life from a very similar script.

I often wonder about life and how it works. When I run into people dealing with the same issues as me, I ask myself: Is this my cue to help? Is this a sign of encouragement from the universe that I am not alone in my struggles? Is this proof that the experience of life is really not so different for all us human beings?

All these questions then got me wondering if life is a series of problems or really just one problem dressed up in different clothes? That got me thinking about the quote at the top of this blog post. Is life just "one damn thing over and over" like Edna says?

After considerable thought I have to say, Yes, life is one damn thing over and over and that one damn thing is change.

With each tick of the clock, everything and everyone in the world changes. Nothing stays that same, including ourselves. Even if we think we don't change, the truth is all the changes around us impact us and have the effect of changing us. Life is change, therefore the one task we are all challenged to master is adapting to change. Which means life is not really a series of problems, but a series of opportunities to change.

After disclosing her current set of circumstances, Robert's friend asked if she had overwhelmed him with all her current news. I guess she felt like she had shared a lot of unpleasant things that might have overwhelmed him, turned him off or made him tune out. Robert said no.

What his friend doesn't realize is that he lives with me, the Queen of Change. He's already lived through me taking care of my Dad with Alzheimer's and me dealing with my siblings. He's living with me and my life with chronic illness. Since my life has always been on the fast track of change, being with me has actually improved his ability to adapt to change. That's not to say that he doesn't still view all these changes as one damn thing after another, but I know he won't let change get in his way of being a friend.

Yes, I'm lucky to have him as my spouse and she is lucky to have him as a friend. And together, we will all just roll with the damn changes.

My Community: Thoughts About Carrots and Sticks

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I read an email yesterday evening from the City Councilman that represents our area. He explained his stance on a controversial plan intended to both help the homeless and reduce the number of homeless sleeping in cars and motor homes parked on residential streets at night. In his email, he literally used the words "carrot and stick" to describe the two pronged approach of no parking between 2 a.m. and 5 a.m. for non-residents, restrictions on RV parking in residential areas and offering the homeless living in their vehicles safe parking areas where they can legally park as long as they agree to social services that help get them off the street and into housing.

Of course the only part of this plan currently in play is the "stick", i.e. no parking between 2 a.m. and 5 a.m. for non-residents and restrictions on RV parking in residential areas.

But really, the thing that struck me the most was his use, or rather misuse, of the term "carrot and stick." Doesn't the saying go something like "carrot on a stick" and isn't it a metaphor for getting someone to do something they don't necessary want to do by luring them with a tempting incentive? You know, like getting a stubborn donkey to walk by dangling a carrot in front of it, just out of reach of its mouth. Instead he twists the meaning, implying that society need to both punish and reward certain behaviors in order to get the homeless to stop being a parking nuisance and start getting themselves back into housing and their cars into garages.

It just seems odd and wrong to talk about the homeless using carrots and sticks. Although, I guess I should be honest and admit that this whole, weird way to talk about a problem truly does reflect the somewhat schizophrenic way our society approaches social problems. On the one hand, we believe that people should just get their act together and straighten themselves out on their own. On the other hand, those down and out are sometimes seen as victims that need our help. In many ways, our approach does resemble luring people with carrots and then hitting them across the knuckles with a stick and vice versa.

I believe the problem of homelessness is complex and multifaceted. I also believe that offering or forcing people to participate in services designed to help, i.e. get them off the street, may or may not solve the problem. I think that the previously housed homeless who sleep in their cars because they lost their jobs and their homes are more likely to get back on their feet with some assistance. The chronically homeless who have now discovered the benefits of sleeping in a vehicles will probably be more reluctant to give up this way of life. The Councilman's plan is to get all these (and more) homeless groups back into housing. It's an honorable goal, but one not easily obtained.

While some people will only change to avoid negative consequences and other people will only change if coaxed and rewarded to do so, I think most of us fall somewhere between these two extremes. Acknowledging this fact makes me think that talking about public policy using the words "carrot and stick" grossly oversimplifies both the problem and the solution. Or perhaps it just goes to show that a "housed" politician truly can not relate to his "homeless" constituents.

What do you think? Are you more of a carrot or stick kind of person? Do you have a better idea about how to help the homeless and address the concerns of the housed? Leave me a comment and share your thoughts.