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Letting Others Down: Living with Lupus

I'm overly conscientious. Some might think this is a good trait, particularly when they happen to be on the receiving end of my hyper-conscientiousness. I will always arrive on time (or early and sit in my car and wait until the appointed time), deliver whatever it is I promised you, return your calls, and you can count on me always to do what I tell you I'm going to do. Sounds great, right?

Here's the flip side: If I'm not careful, Miss Conscientious's evil stepsisters-Inflexibility and Guilt- sneak into the picture. I do try to remain relatively flexible in life and not hold others to my own high standards, but I struggle with guilt. Over the years, I've learned that my lupus has a bit of a twisted sense of humor. First, she lets me commit to things, knowing just how conscientious I am. Then, when the day or appointed time comes to follow through on whatever is planned, she steps in with her wicked little laugh and says, "Not so fast, Miss Cindy. I think today will be a pajamas-all-day day." And out the window my plans fly, hitting Guilt as she makes her way in when I have to call people and tell them that I won't be able to do what I promised.

I realize this isn't rational. In my head, I know that people understand when I am sick and can't show up, just as I understand when the same thing happens to them. But I don't like it. No matter how much I try to sugarcoat it, letting other people down just feels crummy to me. This unpredictability is one of the things that make living with chronic illness so challenging. And it is compounded by the fact that the disease is invisible, because often on the outside we look fine and like we should be able to do what we promised.

This presents a huge dilemma. Do I regret invitations and not accept responsibilities because I might not feel up to them when the day arrives, or do I accept and then cancel if I don't feel well? I am sure there are millions of others struggling with this decision as I write. It is especially important because if we start to regret everything, we can become lonely and negative things start to snowball. That's when I begin to feel that lupus has Cindy, not that Cindy has lupus. And, for me, I refuse to let this happen. I refuse to let lupus run (or ruin!) my life.

So, here's what I've decided: I plan to keep being actively engaged in life, especially with people who know and love me. I'll make the plans, I'll accept the responsibilities and will do my very best to do what I promise. But, and this is a big but, my health does come first. If a pajamas-all-day day happens to hit on a day I have plans, I might have to reschedule. And you know what I've learned? Life does go on without me (hard lesson to my conscientious little soul) and it is a whole lot more fun being with me when I feel well. I'm leaving Guilt behind and bringing Smile and Humor to the party!

About Cindy Coney: Ambassador of hope and author of The Wild Woman's Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.

Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.

Follow Cindy's Blog at www.cindyconey.com

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Four doctors, two men and two women, collaborate around a laptop in a brightly lit office.

Dr. David Mount

Dr. David Mount would rather listen than talk. It's not that he doesn't have plenty to say. But on a patient's first visit, he wants to hear what led the patient to his office. The neuropsychologist has a keen interest in the mind/body connection and a focus on how pain affects the brain. ( "Pain impacts self-esteem and personal well-being," he says. "It can cause internalized agony.") Patients come to him with a variety of physical conditions-diabetic neuropathy, rheumatoid arthritis, pain associated with an injury or surgery-and a variety of cognitive impairments that have resulted from a physical condition. Patients from all over the country (and the world) seek him out through his Mind Body Institute Beyond, located in Winston-Salem, North Carolina. Most patients are referred by their medical doctor when a physical malady begins to impact cognitive ability-including memory. And while Dr. Mount's preference is to be consulted when a physician first begins talking to a patient about cognitive impairments, he says instead he's often brought in when the physician is running out of ideas. A little more conversation No matter what stage he begins with a patient, it always starts with a story. "We start with a patient-centered evaluation," he says-with him listening as the patient talks. "I want to hear their story, uninterrupted," he says. "I don't want them to self-edit anything." Dr. Mount employs counselors and therapists at his center, but he personally sees every patient who comes in. Patients realize the power their words carry. In Dr. Mount, they've found a doctor who's willing to listen to every detail of their pain journey-all the treatments tried, the loneliness that can accompany chronic pain, the heartbreak of not always being able to keep commitments. The doctor is ready to absorb it all. "MDs only have so much time," he says. "I have more time to invite a storytelling approach. And patients want to talk. They may have gotten the message before to 'shut up' about their pain. Once they start talking in my office, it's often hard to stop." Once their story has been told, he asks how they'd rewrite it. "I don't mean how they'd rewrite it without chronic pain," he explains. "I ask how they'd deal with the pain differently." Experience can be an excellent teacher. Once patients begin to consider what they would undo if they were rewriting their memoir, they can begin to take control and formulate a plan. Dr. Mount values the work MDs have done before they bring him into the mix, but he doesn't just thank them for the referral and move on. He uses a collaborative approach that involves the patient and the referring physician. His goal: to help patients with cognitive impairment that's a result of pain. Often, the impairment is a result of pain medication. Reducing a patient's medication is often among his prescriptions. That's accompanied by nutritional education, stretching-which is often done in his office-and other holistic treatments. He understands what his patients are going through. He's been there himself. When the doctor becomes the patient Dr. Mount suffers from chronic pain in his neck and spine. It began in 2005 when he was new to Winston-Salem and went to a chiropractor for an adjustment. After getting what he considers "substandard care," he realized he needed to educate himself on treatment options. "I experienced anxiety, uncertainty and was questioning myself," he says. "My work and social life were disrupted. I know about the stigma of feeling judged. Chronic pain will wear you down." He was losing sleep because of the pain-and was less likely to work out, too, though sports had always been a big part of his life. He wondered, "Why me?" He tried the gamut of specialists-neurologists, acupuncturists, massage therapists-but wasn't having success with any of them. That led to an "aha" moment: "The system I was moving through was broken. The specialists I was going to weren't talking to each other. The system was fragmented, and the patient was suffering as a result." He also understands that patients must be involved and invested in their own care-and that following doctor's orders is imperative. "Compliance," he says, "is the mortar that holds the bricks together." Noncompliance often arises, he says, from the psychological effects of pain and pain medication. So, who better than a neuropsychologist to partner with patients on sticking to their treatment plan? "I can help reinforce compliance," Dr. Mount says. That's something else that referring MDs appreciate about their partnership with him. "Compliance starts with attitude," he says. "If you can improve the attitude, then you achieve improved outcomes." 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There are things about my patient, who I've been treating for 20 years, I never knew that I learned from you.'" That's the power of storytelling. The in-depth report combines elements of the patient's story with Dr. Mount's detailed findings. It's a comprehensive look at the patient's pain history, what's been tried, how effective it was (or wasn't) and what side effects may be the result of prescription medication. It's much more detailed than the notes a doctor typically dictates. Again, it's because Dr. Mount and his team dedicate time to active listening. He has seen some patients in their mid-30s who have the memory function of someone who's 65 or older. But the good news? The situation can be reversed, he says-often by reducing the number of meds a patient is on. 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