How have you been?

November sure was a busy month, but there is much to be thankful for!

Just a reminder that my new blog site can be found HERE!
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You can also follow my on Facebook! Just search Living Well With Dr. Joy! I use that page to post blog updates, my National Pain Report columns,  interesting articles, advice, and MORE!

Happy Holiday season to all!

-Dr. Joy

Blog Change!

Due to Dr. Overman’s busy schedule, I have ventured solo into the blogging world. The content of the blog will be identical to this one. It just has a different web address, find and follow me at www.livingwellwithdrjoy.blogspot.com for more advice, resources, and updates about chronic illness and learning to live with it!

Thank you to all my followers! Talk to you soon!

Is Your Body Trying to Tell You Something?

A few years back I read a great book by Jim Lynch called The Highest Tide. It was about a young boy who was fascinated by the sea life in the bays around his Pacific Northwest home and spent early mornings in his boat roaming the shallow waters. Then he began to notice that the sea life was changing, new things appeared he had not seen before and did not seem to belong. His observations caught the attention of the local press and he was asked by a reporter, “What do you think Mother Nature is trying to tell us?”

He answered, “PAY ATTENTION!”

I was diagnosed with interstitial cystitis nearly two decades ago and my condition has been well managed for years, but recently I had a flare of symptoms, primarily pelvic pain that went on for weeks and weeks. I thought, what is my body trying to tell me? I reviewed recent activity and stress levels, and had to acknowledge I was way over the top in both areas. We sold our house, moved, downsized and I packed and lifted boxes for weeks and weeks. That hard work was now past, but I was still in a flare.

I reviewed the list of foods to avoid for IC patients and saw that many new ones had been added since I last checked. Had I made any dietary changes in recent months that might contribute to this persistent pain? Imagine my dismay when I realized the culprit could be that lovely little shot of Tequila with a squeeze of lime I’d been enjoying in the evenings recently. I cut it out, a few weeks later, flare resolved. Darn, I hate when that happens, when the good news is bad news.

The second bit of compensating good news is that my body was trying to tell me something, and when it got loud enough to get me to PAY ATTENTION, the answer emerged. A good lesson—re-learned. 

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Patient Effectiveness: How To Be Sick.

file000559367251Here’s the frustrating thing. Schoolteachers get training to be schoolteachers. Pregnant moms and their partners can take a class on childbirth. Trained therapists help people deal with mental and emotional problems. Physicians, nurses, lawyers—all get training, years of it, on how to do their job.

Nobody teaches you how to be sick, at least nobody is in charge of it, or certifies it, or let’s you know when you are ready to graduate and do it well. In my experience, it’s a rare and special physician who will diagnose a patient with a chronic illness and then take on the additional role of making sure that the patient has all the resources needed to successfully navigate the difficult journey ahead.

This educational gap is a big reason why being sick is such a hard job. And it’s no wonder sick people often feel so lost, confused and abandoned. Our providers are pretty good, and getting better, about teaching us how to take medications. Not so good at all the rest of the challenges we face, like managing pain, fatigue, grief, work and family challenges, diet, exercise and provider relationships. If I had to name a single reason for this, I’d say it’s because the American health care system is built on the assumption that patients aren’t supposed to stay sick. We believe in cures!

Now that we face epidemic levels of chronically ill citizens and are counting the dollars this costs us, there is movement in our country to become more pro-active at helping people learn how to be sick effectively, and I am a passionate part of it. There are career paths for patient advocates and patient navigators and a national committee has been formed to establish certification standards. There are helpful books, like my own, not on a specific illness, but on the experience of being ill. There are patient support sites and forums and disease specific groups offering resources. Health care and hospital organizations are beginning to offer patient self-management training.

Even with this promising forward movement, I don’t think there is a national sense of obligation to patients. I don’t see a widespread social agreement that sick people need and deserve support they cannot provide for themselves. Effective patient education is far from a standard of care. Change can’t come too soon.

The Things Illness Didn’t Take Away

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At the beginning, the business of getting sick was a full time job—finding doctors, getting diagnoses, starting treatment, learning to live differently and, in my case, a long wait for a disability claim. After a few years, once my life was more about being sick than getting sick, I volunteered at Austin’s ZACH Theatre. I had loved the performing arts my entire life and while performance was no longer among my capabilities, I could be a volunteer at this outstanding professional theatre.

Soon I was on the board of trustees and was asked to chair a committee. I sat down with the staff and other board leaders and let them know I was a sick person, I had good and bad days, and I wasn’t always reliable. They listened, but took me on anyway. Over the years this happened again and again, I was invited to lead, I warned them of my limitations, they rolled their eyes and gave me the job.

I came to understand that what I had to offer was a rare commodity in the non-profit world. I had time. Unlike other talented leaders who were maintaining full time careers and raising families, in addition to their community service, my time was free to serve. I eventually became president of this stellar arts organization. We built a new theatre, raised the quality and professionalism of our youth programs, hired professional, experienced staff, and made a balanced budget part of our culture.

My last board meeting as president was this week. I was given a collection of photos from my tenure in a lovely, large frame with an inscription.

“With gratitude for your passion and vision.”

The passion and vision that my colleagues were so kind to note came from an abundance of time. Over my years as a leader, I had time to think about where we were headed, to look at many angles, take the long view and envision the future. Time, passion and vision were three things illness did not take away from me. In fact, they are three gifts that illness gave me. For this, and a theatre that, early on, trusted a sick person to lead, I am so grateful.

American Health Care: Who’s the Client?

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Some years ago my husband and I built a custom home. One day he was in the local hardware store and ran into one of the contractors working on our house. The contractor was quite happy, as he had been awarded a store credit for buying the building materials for our house at this store. My husband sought out the manager and asked him about this.

“Yeah, we do that for all the contractors,” the manager said.

“How does it work?”

“Well, the more they spend, the bigger the credit.”

“So do I get a store credit?” my husband asked.

“No, why?”

“Because the building materials were for my house and I paid for them.”

“Yeah, but you’re not the client,” the manager explained.

“How can I not be the client, it’s my house.”

“Because you will get your house built and that’s the end of you. If we treat the contractor’s right, they will come back here and buy their supplies for the next house and the next one.”

“So you are giving the contractors a reward for spending more of my money?”

“Well, when you put it that way….yeah, I guess so.”

We didn’t have a great experience with that house and in time came to understand the objective was to bill us as much as possible, using statements and language that was confusing and vague, while erecting barriers that kept us feeling powerless and protected the lifers working in the system. We were the amateurs; they were pros, and they were out in front of us at every turn. Sound familiar?

Many America patients experience health care in a similar way. We often come at it weak, frightened and poorly informed. We might assume that as patients, we are the clients, but we’re not often treated that way. Basic customer service would not include leaving a sick person sitting in a waiting room for hours without any explanation as to the delay. We’re rarely asked to complete satisfaction surveys, ubiquitous among retailers who clearly do value their clients. The niceties and amenities that would keep us coming back to other business are lacking. If we want service, like being informed of our test results, we often have to ask for it, it isn’t offered. When hospitalized, we can experience a dismissive attitude, as if once the procedure or surgery is done, our continuing presence is a distraction and a chore.

I can point to a few reasons for this. We are captive audiences—we don’t get to choose when, or if, to be sick. My choice among providers is often limited by insurance and geography, so the competition in the marketplace doesn’t hinge on my satisfaction. American medicine is designed to excel at acute care and interventions, so patients who access these more expensive services may be more highly valued. We’ve been taught to be passive; to treat the doctor as boss, and this is slow to change. And those who are weak and sick may be more challenged at banding together, raising a collective voice and demanding service. Like the home owner, each patient may be a cog in the wheel that makes things go round, but the actual clients are the ones who continue to work in the field and depend on each other for their future success—the hospital groups, insurers, pharmaceutical manufacturers, companies developing diagnostic equipment and supplies, labs, physicians and support staff in all these areas.

The Affordable Care Act may bring some positive changes. Citizens will have more choices around insurance and more individuals will be buying their own insurance. There will be incentives to encourage better outcomes and reduce readmissions. The numbers and the cost of chronic illness has become a real concern and there seems to be motivation to address this. And after all, the new healthcare buzzword is ‘patient-centered care’. I guess we’ll see, won’t we?

Have You Hired the Right Doctor?—What To Do If You Haven’t

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It took me seven years and many doctors in two different states before I got a diagnosis that led to effective treatment. Desperation helped. I went to an internist, looked him in the eye and said, “I know something is wrong with me. I’m afraid I’m going to die before I find out what’s killing me. Will you please stay with me until we have answers?” As I recall I was clutching his arm as I spoke.

He nodded gravely and said, “Yes, I will stay with you. We will start at the beginning.” He took a complete family health history and performed all basic tests. He had the answer, at least the first answer, in a few weeks. “I think you have Interstitial Cystitis,” he said and handed me a referral. “I want you to see this urologist for confirmation.”

I got the confirmation and gratefully began treatment, only to find that the urologist wasn’t the right doctor for me. His menu of treatment options was very limited. When I reported a reaction to a medication he complained that his ‘other patients had never reported that side effect’. He talked down to me, like I was a child. Most telling, his waiting room was filled with elderly men and IC primarily affects women.  I had to fire him.

I started researching IC patient advocacy groups, asking around among my friends, nurses I knew, other doctors, people at backyard cookouts, anyone. Who knew a female urologist? Who was treating female patients with IC? Who was doing research in the field? In time, I found two women at a university teaching hospital and they were perfect for me.

I think women have a hard time firing a doctor—it’s like firing a hairdresser. Perhaps it’s the human touch, the highly personal conversation and assumed intimacy. But we need to understand we hire a doctor to provide a professional service, like an accountant or attorney. If we don’t hire the right person, and the work isn’t moving forward, we need to be willing to move on.

One time I was speaking on this subject at a meeting for patients with peripheral neuropathy. After the meeting a neurologist involved with the group made this comment, “I’m glad you said that about firing the doctor. Sometimes it isn’t a bad doctor, it just isn’t a fit. The personalities don’t mesh. But doctors don’t get to do the firing, patients have to do that.”

What she said is true. If you want just the right doctor, you have to go out and find that person, maybe by trial and error. Look for these qualities:

  • Experience in treating your illness or your symptoms
  • A willingness to listen and to believe what you report
  • Respect for you as a unique, whole person, not just a symptom or disease