[su_dropcap style=”flat”]R[/su_dropcap]EADING THIS BOOK (co-authored by by Allison Webel RN Ph.D, Kate Lorig DrPH, Diana Laurent MPH, Virginia González MPH, Allen L. Gifford MD, David Sobel MD MPH and Marian Minor PT) answers a lot of questions about HIV. It used to be that HIV was considered a death sentence for anyone who contracted it. That’s not true and it’s well proven by the group of doctors, psychologists, nurses, and therapists who came together to write this book. HIV is a chronic disease, much like any other, it’s serious but there are treatments available today that were once unknown. Men and women who’ve contracted HIV must learn how to live with the symptoms which can be a vicious cycle ranging from physical limitations to emotional anxiety to chronic pain to poor sleep. As the authors of this book discuss in many chapters of the book, the person with HIV has to take control and be responsible for their self-care. Managing a chronic illness is as complicated as it is complex. The road isn’t easy, but this book covers the details of how to manage HIV as a chronic illness and live a satisfying life.
Here’s something you may never think of when learning to navigate and overcome the life-changing symptoms of a chronic illness, HIV specifically in this book, but any long term illness, really. The authors lay out a plan for handling the illness through a unique problem solving process. They devote an entire chapter to teaching HIV sufferers how to make decisions when living with uncertainty. They talk about goal setting, weighing pros and cons, developing an action plan, assessing progress, and making course corrections. The fact is, if you have HIV, you can’t change that. You can change you though, and this book is a guidebook to plunge through the treacherous places known as HIV.
People with HIV often feel physically healthy even though their immune systems are compromised. Medications are responsible for improved living conditions of people with HIV. Without medications HIV victims are at risk for infections, cancers, nerve problems, and an array of other maladies. This is why it’s critical to have a proper diagnosis then live within the guidelines of a healthy lifestyle; nutritious diet, consistent exercise, and positive mental attitude. A range of disorders and other diseases often associated with HIV are identified and discussed in the book.
With the availability of more effective treatments, HIV is now considered a manageable chronic disease.”
This is the good news. Once diagnosed with HIV the person must immediately be subjected to care by medical professionals. Doctors, psychologists, physical therapists, and others who can help with the support needed throughout this illness. Regardless of gender, life management becomes a new challenge through every phase of adulthood. HIV was discovered in the 1980s and from the outset, it was thought that lifespan would be short, but with the advent of new medications, people are living as many years as people who are not HIV infected.
For HIV sufferers, communication and attention are critical when choosing and working with a health care team. Individuals with diagnosed HIV don’t visit their doctors any more often than other patients. It’s important to formulate a plan for taking medications, tracking symptoms, and making self-care part of daily routines. To help get the most from doctor visits, when they occur, is to think of P.A.R.T. Prepare / Ask / Repeat / Take action. These are self-explanatory, but here are a few hints for working P.A.R.T. into the health care continuum. Prepare by listing questions, symptoms, observations, and making notes of medications, supplements and dosages being taken. Ask questions about symptoms, diagnosis, tests, treatments, and follow-up. Repeat what you understand your health care provider has said. Take notes and bring someone else with you when possible, so they can listen too. Take action is perhaps the most important step in treatment. Follow-up with tests, treatments, medications, and activities prescribed.
HIV medications are evolving with new treatments under development. Because of this, communication with a health care professional can’t be minimized. Scammers know how badly an HIV victim wants to be well and feel good so they work overtime to appeal to persons who crave to be freed of HIV. Any treatment options and decisions must be discussed with doctors who are familiar with the disease and with the person’s medical history. Staying in communication with the doctor and having tests as prescribed will help with monitoring the HIV viral load and T-Cell or CD4 Cell count. HIV is one chronic disease that needs constant monitoring.
In HIV cases, medication is a component that isn’t optional. “Successfully managing HIV involves taking the right medications at the right times.” The process is complex and even doctors and other health care workers are constantly boosting their knowledge so they can administer and monitor better. Not all drugs for HIV have the same purpose. Some will stabilize the disease, others will lessen the consequences and slow its effects. This chapter devoted to medications for HIV, especially those referred to as ART (antiretroviral), explains in detail the types of medications available, questions to help determine which meds should be considered, how to stay on course with taking them, and finally when to decide if another treatment is called for. Managing side effects of medications can be frustrating, so the medical attendants responsible for primary care must be informed. Side effects are common but if not reported they can be dangerous.
Evaluating symptoms of HIV can be like riding a roller coaster. Symptoms signal the body that something isn’t right. For someone infected with HIV that ‘something not right’ feeling can be related to symptoms of the disease or it could be related to things such as not getting enough sleep or depression or chronic pain or lethargy. These are all symptoms that crop up from HIV related symptoms, thus, the roller coaster. This is why the authors discuss at length how to check symptoms and evaluate them on a scale of “treat with self-care” to “call the doctor” or “this is an emergency”. What action should be taken based on the severity of the assessment of coughs, diarrhea, fever, headache, impaired vision, vomiting, shortness of breath, and urinary tract infection? The information helps the HIV sufferer know if the symptoms are minor or more serious.
Inserted into the heart of the book is a chapter that anyone can use, regardless of the state of their health. Using Your Mind To Manage Symptoms, examines thought processes, from which actions stem and specifically rounds out the chapter with thorough descriptions of techniques for relaxation, positive self-talk, imagery, visualization, prayer, spirituality, and distraction. Additionally, the authors talk about mindfulness, quieting reflex, nature therapy, nurturing a healthy perspective by practicing gratitude, journaling, taking stock of strengths, and practicing kindness. Not to be missed are the actual scripts to be used in practicing relaxation and guided imagery. The authors open doors of opportunity for victims of HIV to improve the quality of their lives.
Physical activity is the last thing anyone with a chronic illness wants to think about. However, as pointed out,
Regular physical activity is vital to physical and emotional health.”
Beyond the benefits of regular exercise such as maintaining healthy weight, increasing strength, improving body composition, managing blood sugar, and building stamina, exercise has long term effects on quality of life. Find tips for flexibility and strength and the exercises to build both in this volume. What is learned in the chapter on physical activity will help structure an activity program that can be done at home or can be used to find a class or gym where fitness goals can be achieved.
Healthy eating is one of the best personal investments that influences the effects of HIV on the body. It’s important for everyone to pay attention to the nutrition they consume, but for someone with a compromised immune system, it’s essential. Read the analyses of nutrients needed and what role they play in building a better physiology. What factors of foods should we be aware of when making choice? Which foods work for us and which work against us when we want to be healthy and feel good? Of particular interest is the chapter on which foods can help circumvent specific long-term conditions such as diabetes, osteoporosis, heart disease, stroke, lung disease and, of course, HIV itself.
Let’s face it. There is a stigma associated with HIV. Helping family, friends, co-workers and anyone else understand the disease is a challenge. Opinions, frustrations, anger, depression, apathy and a cavalcade of feelings trounce relationships and are common when people don’t understand the ripple effect of underlying emotions. This can be true in any situation but is enhanced when knowledge is minimal and reactions are based on mystery, like the HIV virus. This book offers solutions for barriers to understanding HIV and presents facts and techniques for educating the population affected by HIV who are the people who have HIV or those who care for them.
