Lupus, Steroid Induced Psychosis and Navigating Healthcare

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patient (n.)

“suffering or sick person under medical treatment,” late 14c., from Old French pacient (n.), from the adjective, from Latin patientem (see patience).

I saw the opening maw of hell – Herman Melville

On November 15, I dropped into the medical maw. It wasn’t as dramatic as Melville’s “opening maw of hell,” but it felt insatiable: appointments, labs, questions; online research; more appointments and labs; drug side effects; more research. Followed by more doctors, more second opinions, conflicting medical advice. More drug side effects. For a story with a “happier ever after” ending, it sounds fraught. In fact, there have been many positive insights gained and there are good medical results to report. But the central story here isn’t really one person’s diagnosis with lupus at age 53 and subsequent side trip into Steroid Induced Psychosis; it’s about health, our medical system and some ways to make sure the two are working for you, not against you.

patient (n.)

“suffering or sick person under medical treatment,” late 14c., from Old French pacient (n.), from the adjective, from Latin patientem (see patience).

I saw the opening maw of hell – Herman Melville

by Angelique Gammon

      On November 15, I dropped into the medical maw. It wasn’t as dramatic as Melville’s “opening maw of hell,” but it felt insatiable: appointments, labs, questions; online research; more appointments and labs; drug side effects; more research. Followed by more doctors, more second opinions, conflicting medical advice. More drug side effects. For a story with a “happier ever after” ending, it sounds fraught. In fact, there have been many positive insights gained and there are good medical results to report. But the central story here isn’t really one person’s diagnosis with lupus at age 53 and subsequent side trip into Steroid Induced Psychosis; it’s about health, our medical system and some ways to make sure the two are working for you, not against you.

My story of diagnosis and treatment is both a common and uncommon story: an otherwise routine medical inquiry or lab test reveals something altogether more serious, chronic, or life threatening. Regardless of the disease – lupus, cancer, heart disease, diabetes – some things about having that conversation with a doctor are universal. Your reality is altered followed by What happens now?

The hope is my journey can help others navigate the healthcare system with sound advice from professionals on how to better communicate from both sides of the doctor/patient relationship and how to cope when hearing something you didn’t want to hear from a medical professional.

There is also some good information on what lupus is: an often-misunderstood disease, common in the general population over the age of 60 and a quality-of-life disease not a life-or-death disease.

Then there’s some interesting information on Steroid Induced Psychosis, which is very uncommon but can occur in anyone who takes prednisone, even at doses as low as 40mg per day. But that’s skipping ahead in the story …
 

FAT ANKLES

      Most of my friends call me a health nut. I invite people to workout with my trainer Coach Cliff and me or try a Zumba class more often than I invite people to lunch. My diet of the last 20 years has been Mediterranean and mostly vegetarian with the occasional bits of fish. I’ve been gluten free for about three years. Those less sympathetic to my dietary preferences refer to my diet as “nuts and berries” or “extremely picky” depending on their personal love for chicken fried steak.

      An aging, former athlete (basketball and track at Texas A&M), I like being in shape better than not being in shape. I also lost my father at the age of 54 to a lifestyle disease: cancer from smoking.

      So mid-November when my ankles began to curiously swell after exercise, I decided to see a doctor. When the body speaks, I listen. Caught between the fallout of the Scott & White Health Plan and St. Joseph Hospital – and not often ill – I hadn’t established a new primary care doctor, so I took first available for a family practice doctor to be told the swelling was normal for someone my age who exercised so much. I disagreed. We compromised on re-running four-month-old lab panels from my last annual physical. I reported to the lab. It wasn’t age and exercise.

 

RHEUMATOLOGISTS TREAT LUPUS

Dr. Ricardo Pocurull routinely refers his patients to the Lupus Foundation of America, Mayo Clinic and Johns Hopkins websites as reliable sources for information on what lupus is: a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. Lupus is an autoimmune disease, meaning your body can’t tell the difference between a “foreign invader” like a flu germ and some healthy part of your own body. Instead, your body attacks itself.

As a board certified rheumatologist and Fellow of American Rheumatology, Pocurull treats patients with “rheumatic” diseases: those that affect the joints, muscles and bones. Some of those diseases include arthritis, certain autoimmune diseases like lupus, and musculoskeletal pain and osteoporosis. He refers lupus patients to those websites not to avoid explaining their disease, but to “narrow the focus.”                  

“No two lupus cases are the same and diagnosis is sometimes very difficult,” says Pocurull. “Some patients have a mild form of the disease – it’s not a death sentence – but it takes a rheumatologist to sort out lupus.”

He is also quick to reassure that for the first time in 40 years there are new reasons why a diagnosis of lupus, while life altering, isn’t necessarily life devastating.

“New drugs like Benlysta and CellCept have added more [treatment] options,” he explains. “Until recently, there were not many new therapies. CellCept is not as toxic as chemotherapy treatments used in the past. Benlysta is a biologic that is very new and very promising. It also seems to help fatigue and difficulty concentrating,” which are often symptoms of lupus. “There are actually a number of new lupus drugs in the pipeline,” Pocurull says.

With any lupus patient, on one point Pocurull is very clear: “Any patient with lupus needs a rheumatologist. The field is rapidly changing and patients need experience treating lupus – sooner rather than later.”

Lupus is difficult to diagnosis because it is not a “yes/no” lab test. It is more a collection of positive markers followed by more tests. “There is the ANA [Antinuclear Antibodies] test,” says Pocurull, as a first step, which only shows if autoantibodies are present in the body. According to the American College of Rheumatology website, only about 11% to 13% of people with a positive ANA test have lupus and up to 15% of completely healthy people have a positive ANA test. A positive ANA test does not automatically translate into a diagnosis of lupus or any autoimmune or connective tissue disease.

If the ANA is positive, says Pocurull, “We do series of tests – more specific tests –for kidney, heart and lungs.” Some cases he describes as “smoldering”– a few positive markers, few or vague symptoms. Other lupus patients have dramatic onset symptoms: “Organ systems usually. With the kidney, it may be worryingly high blood pressure, swelling legs or protein in the urine. With lung involvement you see shortness of breath; with the heart, muscle aches and weakness.”

This is the crux of lupus.  Long-term treatment is a treatment of lifestyle, says Pocurull. Lupus patients often die of heart disease or kidney disease. Treating lupus is a long-term process to maintain vital organ systems, he says.

How do patients get better and enjoy the best quality of life after diagnosis? Pocurull is direct and specific: “Overwhelmingly, studies show the stronger the family support system, the better [lupus patients] do. The first thing I do is narrow the information so they can concentrate, which is hard to do if they try to find out everything and get lost in the forest for the trees.

“One thing to narrow is the organ system to target – the priority organ system it affects. If life threatening – kidney or lungs – I recommend very aggressive treatment.” This is where both doctor and patient sometimes run into problems – aggressive treatment can include the use of steroids, which have both short and long-term risks and side effects.

Pocurull often recommends a “high dose [of steroids] initially to get the disease under control,” which studies show can actually reduce the amount of steroids taken over the course of the treatment. “High doses sometimes have side effects, not pleasant ones,” he says. “Long-term effects can be worse than some aspects. You have to determine their use carefully; patients have to be informed.”

Pocurull also refers patients for counseling when diagnosed, though he says that advice is often not well received. Pocurull’s experience, and many well-established psychological studies, show that patients who seek counseling when faced with a health crisis are more in touch with reality and better able to accept lifestyle and other changes brought about by their medical condition. “It’s very, very helpful,” he adds, noting, “There are studies looking at that: lupus and brain and mood disorder. It does need to be treated, particularly if they present with anxiety and depression.”

For dietary guidelines, Pocurull refers patients to the sites that match the lifestyle changes their case of lupus will require: American Heart Association and smoking cessation for heart-affected lupus; a vegetarian diet if the patient is willing; the American Diabetes Association and a dietician for lupus patients with diabetes.

Pocurull offers his final thoughts to those diagnosed, or suspected but perhaps still smoldering, with lupus or lupus-like symptoms: the anti-malarial drug Plaquenil is so safe relative to its ability to prevent a person from developing full-blown lupus that anyone deemed “at risk” by a rheumatologist should be on the drug long-term … for life.

“It may keep [lupus] in remission,” he notes. “It may reduce diabetes. It has a positive effect on heart disease,” he says of Plaquenil. “It can be taken during pregnancy,” he adds, since lupus often expresses during childbearing years.

Which is why Pocurull also warns young women at a higher risk of lupus to take only birth control pills with the lowest estrogen and for women with active lupus to use other forms of birth control, such as barrier methods.

Yes, lupus is complex and confusing and can be devastating if untreated in some body systems. But Pocurull says he has seen patients enjoy a better, if different, quality of life after diagnosis.

“Lifestyle changes,” he says simply. Sometimes proactive, positive lifestyle changes lead to a healthier, higher quality of life after a diagnosis.

 

STEROIDS

      My annual physical labs had looked like paid-for SAT results – perfect for a 53-year-old health nut: cholesterol, mostly good kind, not-to-die for 141; blood pressure a comfortable for me, lizard-low 90/50. All organ function tests good … except a minor protein spill in the urine: 300 mg. Nothing to be fussed over assured my old doc, to which I agreed. It’s not that uncommon in people who work out a lot and then binge on tofu at Chef Tai’s Mobile Gourmet after. “Get it checked next time you’re in to see your new primary.”

      The ankle swelling labs tell a different story. I’m now spilling 11 grams of protein in the urine – 11,000 mg – and need a new primary care doctor and a nephrologist in short order. I get into both within a week. My new primary says this kind of kidney problem needs a kidney specialist. At my request, he schedules a first-available appointment with a local nephrologist and a second opinion with the Scott & White South Loop Nephrology Clinic in Temple.

      Temple is familiar medical ground for me with a family member who did his residency and first medical staff position there. I’m comfortable there. I also believe in second opinions; so do good doctors.

      Blood pressure medication is the first prescription from the nephrologist. Blood flow to kidneys under attack and spilling protein is critical to long-term organ health. Never mind my blood pressure is already “low normal.” I fill it and spend Thanksgiving in a state of near-constant head rush from the medication and hours researching kidney disease and protein spills and what people with kidney disease should eat. It’s a meager Thanksgiving feast on my plate even as I cook “traditional” for my family, but I believe heath starts with food and I’m ready to start the battle for my as-yet-undiagnosed kidneys on my dinner plate.

      I get into the Temple Nephrology Center right after Thanksgiving and manage to get a kidney biopsy scheduled for three days later. Here’s how.

      Before the doctor stepped into the room,

      I gave his nurse:

      – a typed patient history and timeline of the progression of symptoms that I had prepared;

      – copies of all previous lab work including the tests he had ordered (inability to access labs across inside and outside computer systems is notorious). Doctors without data waste their time and yours.

      – and a written set of questions for the doctor.

      When nephrologist Dr. Luis Concepcion walked into the room with one raised eyebrow, I knew the message I wanted to convey had been received: I am a patient who prepares; a patient who is comfortable with and prefers specifics to generalities, including lab test results; and I was ready to cut to the chase with his vast nephrology experience. What’s the next step?

      Biopsy, he says. No anesthesia, no CAT scan, ultrasound guided, I request. Eyebrown again. No problem, he says. Easy enough in thin people.

      I still have to fast before the 10 a.m. procedure at Interventional Radiology in Temple, which makes skinny people on high blood pressure medication cranky, but after an intake chat with a very nice radiologist, I am allowed to amble into the CAT scan room where I merely lay facedown while he uses a local anesthetic to snag six kidney samples, sharing ex-college jock stories with his assistant and causing consternation to the pathologist who checks the samples and obviously likes his patients asleep.

      I’m used to that; I once had knee surgery awake with a spinal block and actually pointed out to the anesthesiologist his blood pressure was probably higher than mine, no thank you, I don’t need anything to relax. I’m that kind of patient: odd.

      Eight days later, my husband and I are back in Concepcion’s office for the biopsy results. At the electron microscope level, the biopsy reveals Class V membranous lupus nephritis, the most rare at around 10%, of the various forms of lupus. The good news: up to electron microscope level, my kidney tissue is “pristine” and all my organ function labs are still in the “normal” range.  Kidney function is not impaired. Yes, protein is spilling like crazy and will eventually affect kidney organ function, but the moment to strike is now.

      Concepcion presents a protocol that involves low-dose steroids, continuing high blood pressure medication and cyclosporine, an immune-suppression drug often used in organ transplant patients that has fewer side effects than traditional lupus treatments including forms of chemotherapy.

      Greg and I leave Temple with our “life as we have known it” altered reality. We are now a 29-year-married couple with a health-nut wife diagnosed with a rare form of lupus. We have prescriptions that we drop at the pharmacy that night, but that I do not wait to pick up.

      I have already scheduled a consult with rheumatologist Dr. Ricardo Pocurull in College Station for the next day.
 

CONVERSATION WITH A DOCTOR

Here is a cited statistic that ought to make everyone suck in their breath: adults listen with just 25 percent efficiency (Hunsaker 1990). That means that as adults, we process what we hear only one quarter of the time. Now take those same adults and whallop them upside the head with bad, scary sounding, confusing medical news and imagine what happens to listening and processing. Nothing good. Your health depends on getting more than 25 percent comprehension out of your doctor/patient conversations, even when there isn’t bad, scary sounding news.

To better understand how to hear your doctor, and how to help your doctor hear you, it’s important to visit both sides of the clinical desk – the doctor’s and the patient’s.

Dr. Charles Sanders, OB-GYN at Scott & White Clinic College Station, taught humanities and was Humanities department chair at the Texas A&M Medical School for nine years. Even as he was teaching doctors-to-be about the important role humanities – the art of medicine – plays in medical care, he was fielding queries from colleagues along the line of, “Hey, Chuck, why do we need to teach humanities in medical school?”

Dr. Sanders is both a patient teacher and firm believer in the guiding principal of Dr. William Osler, known as the “Father of Medicine” and one the four founders of Johns Hopkins Hospital: the patient comes first. For doctors to do that, he teaches, they need to be able to talk to, and get to know, their patients. And one of the best ways to learn how to get to know patients is by including humanities in a doctor’s training.

“Doctors fulfill the place of listener,” he explains. “They have to know who the patient is, their fears and their beliefs. It is often helpful to ask simple questions like who their parents are and where they are from. Establishing a rapport helps on many levels. It builds trust and improves communication.

“Believing in your healthcare professional is huge” to successful patient care, says Sanders.

He tells the story of a woman diagnosed correctly with diabetes and prescribed injectable insulin, which is both sound and scientific. However, if you find out the patient’s brother died of an overdose from needles and she has a phobia of needles, you haven’t helped her by prescribing insulin that has to be injected.

“Since you can’t meet everyone in medicine, and you are exposed to so many situations involving people of differing religions and cultures, using the traditional fields of humanities – history, art, literature, music – can be very helpful,” he explains. You may not have experienced domestic violence, mental illness, fatigue or impending death personally, but you can get a better idea of what someone is feeling through a poem about death, a song about violence … and the past, he says.

Sanders references William Faulkner’s oft-quoted line, “The past is never dead. It’s not even past.”

“If you don’t remember your mistakes, you may repeat them,” he reminds. “There’s a thing called a ‘negative study’ in medicine, meaning the study showed some treatment did not work.” The medical profession reports those so that years later someone does not repeat ones mistake.

“Humanities also helps you understand that the art of medicine foremost requires caring. It might sound corny, but caring is a big part, if not the biggest, to being the consummate medical professional,” Sanders says. “Being professional for a physician includes several aspects, but the number one requirement of being a medical professional is putting your patients’ concerns above your own.

Leaning forward, closer to the patient side of the desk, Sanders says, “One thing that separates us, along with nursing, fireman, and certain other professionals, is we place your concerns above our own.” 

To quote William Osler, 1898: “Our sole reason for existence is service to the patient.”

 

PATIENT DO’s

To understand how to set up a conversation with your doctor to build better communication, it’s important to first make a distinction between the science of communication and the art of doctor/patient communication, says Richard Street, PhD, and professor of Communication and Research Professor in Medicine at Texas A&M University. He is also director of the Health Communication and Decision-Making Program in the Houston Center for Quality of Care and Utilization Studies at the Baylor College of Medicine.

Street’s background in the science of communication is well-documented: for the past 25 years, he has developed an extensive program of research examining issues related to health care provider-patient communication, medical outcomes and strategies for increasing patient involvement in care.

“The science, the pattern of regularity, generally shows what people need to do to more actively participate in talking with doctors about health issues,” says Street. “It says you need to have motivation, some knowledge of your health situation, and communication skills to communicate competently and to engage [the doctor].

“If you want to participate – even if not – your doctor needs to know what’s on your mind and what you need. The patient has a responsibility – all parties have a responsibility – to engage in the conversation. The doctor needs to hear either because you want them to or because they need to, to the extent you can.

Street offers some simple steps prior to your doctor’s visit: have some knowledge of your condition, symptoms or concerns. Practice – yes rehearse – by thinking about both what’s in your mind and on your list of concerns until it’s fluent.

“It’s not just what you know,” says Street, “it’s the understanding of your health situation that you and the doctor end up creating together – not something you do on your own. That’s science – when patients talk, more typically, good things happen.”

The art, says Street, is in realizing that every doctor and patient are different and in how to “finesse” the conversation. He uses a waltz analogy: “Everybody knows waltz moves, but even if you know, you still have nuance, improvisation … regardless of who is leading, you must coordinate and cooperate with your partner. The art of doctor/patient communication is to work through the unique quality of the person, what they have and then have the conversation and accomplish the shared goal: build shared trust.

Street describes where science and art intersect vitally again – at the moment of treatment decision: “Science, probability, other population statistics of what we know and what works best most of time” determine treatment options, he says. “Patient values – these [treatment] choices have consequences – what is important to you is a moving target. People are really resilient and typically end up doing better because they want to survive and thrive.  But the point is, if you look at evidence and your values, there is not a single answer … your opinion matters.

“Part of good medicine is being consistent with patient values, autonomy and respecting what patients want, and that’s not just what the patient needs,” says Street.

 

2 PLANS, 1 DECISION

      I’ve left Conception’s office with copies of his patient notes, his protocol for the lupus with the scary name and more copies of all labs ordered by anyone on this journey. Some of these carried labs will be referenced at every doctor’s visit I make along the path. One set will remain lost forever: my name was misspelled with an outside doctor code. When I couldn’t pick up results, I simply requested they rerun the labs. Doctors need data. I want data. Lab vampires are friendly.

      Pocurull’s nurse receives the same packet as Concepcion’s nurse plus the haul from the nephrology clinic. Pocurull and I engage quickly, productively. Pocurull likes to explain and then tap on his computer with a stylus as he makes notes that patients leave with. I like not having to ask for notes. His perspective as a rheumatologist is different: I may have Stage V lupus membranous nephritis in my left kidney, but my body has systemic lupus erythematous. It may have expressed as a protein spill, but it is elsewhere. He wants to attack the lupus before it expresses in more body systems – brain, lungs, heart – especially since those systems are all otherwise healthy, with a protocol that will also bring the nephrotic syndrome (protein spill) under control.

      His protocol includes CellCept, a high blood pressure medication, some supplements and high dose steroids. Specifically, Pulse therapy: 1,000 mg Solu Medrol daily, given intravenously for three days, followed by 80 mg per day orally, eventually tapering to 20mg daily. This suppression therapy will build over six months, then taper for six months with the goal of having re-suppressed the lupus at the end of a year.  When I ask how long I’ve had lupus, Pocurull is less concerned about the past and has narrowed the focus to the future, but he suggests it has been “smoldering” since my 20s or 30s.

      On the second day of diagnosis, I have a new protocol and a decision to make. I talk to people: my husband, my family and a few friends who also happen to be doctors. I ask another doctor: Who’s right? The nephrologist or the rheumatologist? His answer: both of them are right. The question becomes, “What’s right for Angelique?”

      The next morning, I report to the infusion center at the Scott & White Clinic in College Station having arranged to fill a just-cancelled appointment and begin the Pulse intravenous steroid treatment – and the protocol outlined by Pocurull.

      I call the nephrology clinic and schedule a shorter follow up to discuss my change in protocols, cancel the drugs waiting at the pharmacy and start wondering – after more ex-athlete steroid experience than most people – just how people sleep after 1,000 mg of Solu Medrol for three days. They don’t.

 

STEROID INDUCED PSYCHOSIS

While many people suffer unpleasant mental or emotional side effects from steroid treatment, typically prednisone, most of those are “on the low end of the spectrum,” says psychiatrist Michael L. Brown MD, chief, Division of Psychiatry and Psychology, Scott & White Healthcare, College Station Region. It is reassuring to know that severe reactions, like psychosis, severe depression or mania, are rare occurring in only about 6% of all patients who receive steroids, he says.

Of the more common, but still unpleasant side effects, Brown cites symptoms familiar to most people who have been prescribed a standard Medrol Dose Pack to reduce inflammation: irritability, sleeplessness, moodiness. Those symptoms manifest in their more severe forms as profound agitation, marked disturbances in thinking or mood, heightened emotionality, fragmented sleep, increased energy or unusual behavior that develops when steroid treatment is begun. Severe symptoms are generally associated with doses above 40 mg of prednisone per day and usually resolve within a few days of discontinuing the steroids, says Brown. In the most severe cases though medicines may be needed to treat the psychosis through the period of treatment and for several weeks afterward.

In short, there is no need for patients to be alarmed about Steroid Induced Psychosis. However, it is good to be aware of the condition because how seldom, or how often, you take steroids does not predict onset of psychosis or serious side effects. Brown also notes neuropsychiatric effects of steroids may develop after injections, such as for pain, but this very uncommon and typically milder as the doses are smaller.

 

DOWN ALICE’S RABBIT HOLE BACKWARDS

      I’m the poster child for weird drug side effects. It extends to my daughters and sister. Our medical charts are littered with cautionary tales about drug reactions the way Hwy. 36 is littered with empties after ChiliFest. Electronic medical records, courtesy of the Affordable Healthcare Act and eventually accessible from every doctor’s office and Emergency Room, will be a godsend to us …  and everyone in an ER or doctor’s office.          

       It will be helpful if you’re in the ER happily, manically hallucinating about religion and rapture and your mom’s childhood in Oklahoma, singing in rhyming couplets and making yoga poses in your hospital bed. It will be especially helpful then.

      One of the proud 6%, I developed Steroid Induced Psychosis 21 days after Pulse steroid treatment followed by 80mg of prednisone tablets daily. Seven days before developing psychosis, I had begun incremental step-downs of the prednisone for an eventual 20mg daily dose. I remain on a daily 20mg dose of prednisone today.

      It took four days before my husband and children to decide my behavior was more than just “steroid manic.” You can’t blame them. Then my husband realized I was hallucinating.

      The odyssey would include three ERs – Caldwell’s Burleson St. Joseph, The Med in CS and Scott & White Temple – and it would be my husband Greg aided by video recordings of my days-long progressive mania who would help the doctors reconnect me with my right mind. This was especially critical after days-long undiagnosed happy psychosis became violent psychosis on the second floor of the The Med following  treatment with Haldol, a drug commonly used to treat mental disorders that include loss of normal personality and reality. I received three doses.

      In the ambulance with me in restraints headed to Temple – destination the 7th floor psych ward – Greg concludes that what had made me violent was the Haldol, not the psychosis.

      After the first dose, I had attacked him and medical personnel viciously: biting him, pummeling nurses, nearly escaping twice, even with four-point restraints.

      There is a happy ending. Greg convinced the ER doctors in Temple to try a new drug. Ativin, used in the treatment of anxiety disorders, reduced me to a purring kitten and a few hours later, my right mind and body reunited.

      It’s no one’s fault. It is an unusual drug reaction to blame – remember who you’re dealing with – not the Haldol or doctors.

      I remember it all – every word – happy and violent. At the recommendation of the attending psychiatrist in Temple, I am medically approved for counseling with a psychologist, Dr. Brian Stagner, in College Station. Counseling when facing a health crisis is a good thing.

      I regret neither the steroids, which have proven efficacious in reducing the nephrotic syndrome, nor the insights that came from days of happy mania. Really.

      It’s a bizarrely fascinating tale, but it’s not the real story.

      The real story is still being written. Even early in the suppression therapy and changes in protocol, the labs are encouraging. I love data. I’ve gone from 3-times-a-week lab draws to being sentenced to eight weeks between specialists – we compromised with labs for me at four weeks when my husband reliably predicted I would be insane waiting seven weeks.

      I feel good but tire easily from side effects of the drugs and learning to live with an altered reality. I still exercise. I’ve added lymphatic massage as part of my routine by qualified medical massage therapist Phillip Dubois.

      I have followed my nephrologist’s dietary advice and now eat 60 grams of protein every day, with at least 35 grams coming from animal sources – I eat meat. As I told an aghast co-worker, “There is nothing I won’t do to be healthy.”

      I can’t predict the future, but I can predict this: wherever my ultimate lupus journey takes me, I will find solace in knowing I gave it my best effort, just like on the basketball court, just like running around a 400 meter track.

      I have steered a direct path through the healthcare system to the doctors most recommended to find out what was ailing me and have armed for battle for my health with information, a second set of ears I trust, and questions.

      At the crux of this lupus journey is trust: it’s a team approach of nephrologist, rheumatologist and primary care physician all focused on the same thing – What’s best for Angelique Gammon?

                   Because she is the patient.

 

What is Lupus

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain and damage in various parts of the body.

•    Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

•    Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.

•    Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.

•    Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

•    Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.

•    It is believed that 5 million people throughout the world have a form of lupus.

•    Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.

•    Women of color are 2-3 times more likely to develop lupus.

•    People of all races and ethnic groups can develop lupus.

•    More than 16,000 new cases of lupus are reported annually across the country.

•    Lupus Tutorial

The National Library of Medicine, part of the National Institutes of Health, has a complete list of online tutorials, including lupus. 

SOURCE: Lupus Foundation of America, www.lupus.org.


Advice From A Doctor

HOW TO BE A GOOD SUPPORT PERSON 

If you are sitting in the chair next to the person hearing distressing medical news or part of their family and friend support system, psychiatrist Michael L. Brown MD, has some specific advice what to do and what not to say:

      1  At first, don’t say much. Ask generally supportive questions: How are you doing? What do you think? Do a lot of listening. Listening is the most active and supportive thing you can do. We often, before we know it, jump in and start trying to soothe or reassure. It’s a normal and compassionate thing to want to relieve suffering, to want to take away the pain your friend is feeling, but often we can’t. 

      What we can do is simply sit with our friend and their pain, and just listen to it. We listen to how they are experiencing it, their questions, anxieties, and concerns, in a nonjudgmental way.  What you can do is try to understand what their experience is of the situation. Be a listening ear. That doesn’t mean agreeing with or collaborating with hopelessness, but it does help us understand where that may come from.

      2  What not to say: the biggest “don’t” is not to impose your impression of the experience on that person. We often try to relate by telling of another, similar, situation we know about. That may help later, but not so much at first. Avoid telling your friend what they “should” or “ought to” or “can’t” feel. Listen to what they do feel, and help them articulate and express that. It may be shocking at first, but it needs expression. Resolving and reworking those feelings will come later. 

      3 Don’t push your friend to talk.  A patient just given this kind of news is often in a kind of shock, and a little time to recover may be needed and healthy.  After the shock, men and women often process their feelings differently. As a general rule women process these things back and forth in dialogue more readily than men. Women need to give men emotional space and time to get ready to talk, as it were.  Men, on the other hand, need to be ready to listen earlier than they may expect. 

      4  For wives worried their husband won’t talk, I advise patience. Later, they will talk. Men, you may not feel the need to talk, but the women going through your illness with you may need for you to talk to her about what you’re going through. So guys, please talk about it, if only for her sake.

 

Brown concludes with these thoughts: Listening is not passive. It is very active, requires a great deal of patience and self-awareness, and is a hard thing to do well. It may not feel like “doing” very much, but it is. I think women understand this, but men tend not to give themselves credit for doing it well. This process can create tension, so remember: patience, like listening, is active. It’s a strong thing to be patient. I

 

THE MIND HEALS THE BODY 

Consider the following story: 

A patient is admitted to the hospital for open-heart surgery the following day. That evening, a stranger, but someone with mental health training, stops by patient’s room and says, “So you’re having heart surgery tomorrow. How are you doing? I bet you’re scared …” and then listens, and just lets the patient talk.

That patient will get out of the hospital one day sooner than the patient who doesn’t have the opportunity to talk to a mental health worker before the surgery, say Brian Stagner, PhD, a licensed psychologist in private practice through Associates for Applied Psychology and a clinical professor of psychology at Texas A&M University.

The research is clear: “Behavior and cognition have a big impact on physical well being,” says Stagner. “When people are dealing with major physical issues, they have fears, misinformation, and may not be their own best advocate at that point.

“If you talk to a spouse,” he continues, “sometimes they get alarmed. You talk to friends, but you still may not be focused or are still agitated. A psychologist, or a support system person, perhaps a pastor, will listen and help you focus your energies and focus on good decisions, not be overwhelmed or numb.”

It’s not just people facing major surgery. “[Whether it is] facing chemotherapy, making the adjustment to diabetes, or chronic issues,” says Stagner, the mind plays a vital role healing the body.

Confronted with a health crisis, research demonstrates that the patients who take charge of their own treatment – and their own responses – are the ones with the best outcomes, says Stagner. The first step is to get good information: “Details of what you are facing; what treatments are available; and then activate a social support system,” he explains. Giving into fatalism makes a hard situation harder and has negative effects on the body’s ability to heal.

“A physical setback, or a terminal diagnosis, requires recalibration of expectations and what you can do for yourself,” he explains.

It also is important to take care of your mental health when confronted by physical health challenges, says Stagner. He acknowledges the reality of what he and every other physician interviewed for this story see daily: most people are unwilling or unable to see counseling as a vital part of treatment for major health event.

Stagner also points out that because of the way mental health is routinely not covered at the same reimbursement rate as “medically necessary” care by most health insurance companies, or not covered at all, even those open to professional counseling as part of medical care may simply not be able to afford the care.

Stagner points to a well-documented statistic about our current healthcare system: “We spend more money per capita per person on healthcare in this country and we still do not have the best outcomes. We ignore the mental connection.

“[People want] a magic pill, quick surgery or some other fix … when what we need to change is our behavior or attitudes,” he says.

There is a reason for this conditioned response. “People have been convinced there is a magic solution, when there is just old fashioned work,” he says. “Think about how much money the pharmaceutical industry has spent to convinced you to change your life with a pill.”  

Ironically, he notes, “The psychological industry has no money to convince you.” 

Etymology source: Online Etymology Dictionary, Douglas Harper, etymonline.com