Introduction

Three years ago, I wrote a book for people who have HIV.  After finishing 35 chapters in nearly 2 years, I realized that I would have to go back and update every chapter, because everything had changed so much in just 2 years. I made some feeble attempts to get the book published, and after getting just 2 rejection letters, I lost my nerve.  The book sat there in my computer, collecting cyber dust.  

Last month, I thought, why don't I at least put the book on a website and let everyone look at it for free.  After all, HIV is still a problem that people need help with and I have information that will help them.  So that's the reason for this blog. 

I wrote the book because I noticed that there are very few books published regarding human immunodeficiency virus, or HIV, for the person who has HIV.  Occasionally, friends--and friends of friends--would call me on the phone and ask for advice regarding their newly diagnosed HIV positive family member or friend.  I would spend nearly an hour on the phone giving some of my knowledge regarding the way the virus affected the body.  I would then refer the person to medical web sites and even medical books.  At that time, I knew of no comprehensive book that would give the lay person all they really needed to know in one place.  The idea for the book was born.  (Since then, I have learned that there are many good websites, books, and other publications about living with HIV out there and I will refer to these in my blog.) 

I have been a nurse practitioner since 1993 and got my first job working in an HIV clinic at the county hospital in a large Texas city.  I worked there for five years.  I left HIV practice and worked for four years in family practice, only to return to HIV practice in an even larger city hospital. I have been back in HIV care for over 8 years now and seeing HIV patients for over 14 years. I follow hundreds of HIV positive patients.  I see only HIV positive people and work alongside physicians to handle all the health care problems that the HIV positive person has.  My experience has also allowed me watch how those with HIV live with their illness, most through difficult life circumstances.  

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Along the way, the people with HIV have taught me much more than I have ever taught them.  Patients who have HIV are strong, brave, and resilient and most bear their diagnosis with a grace and dignity that I think is astounding.  I only hope that I could be half as brave when faced with the same circumstances.  

So, this blog is for HIV patients and for those who care for and about them.  I am trying to write using simple terms and have stayed away from long medical words, confusing abbreviations, and long paragraphs using difficult to understand medical language.  I have tried to pick simple words to replace the complex medical words and tried to put many examples in the sections to “show” what I mean by something.  Where possible, I used food examples and other objects to show what I mean.  I hope no one takes offense or thinks that I am talking down to them.  On the contrary, I have tried to give as much information as possible but I have tried to put the information in an easy-to-understand format.  

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Each section should stand alone.  By this, I mean that you can read one blog and get a complete picture of what you need to know on one particular subject.  If you read each blog, you will notice that I repeat information that I already talked about in previous blogs.  This is so that each blog stands alone but it will also help you.  When you see the information repeated, you will recognize this information as something you already know, and will feel pleased with yourself about your new knowledge.  

It will help you, as you read these sections, to remember several things: First, everything medical seems to have at least 3, or even 4 names; for example--white blood cells are lymphocytes, leukocytes, or even leucocytes.  The drug AZT is also called Zidovudine and Retrovir.  It goes on and on.  Be surprised only when you see something that has just one name!    

Second, I have used at least two good references for all the medical information contained in each chapter.  By good references, I mean references that we, as HIV providers, look to for information regarding HIV.  I will list the references at the end of each section.  

I am not putting the entire book up on this website at once.  It will probably take me 2-3 months to get this blog up and functioning properly.  I will slowly edit and update each chapter of my book, then post it.

The Center for Disease Control (CDC) says there are more than 1.2 million people with HIV in the US; one out of five of these people are not aware of their infection and there are more than 50,000 new HIV infections diagnosed each year. The newly infected people know little about the disease but the impact of the disease will change them for the remainder of their lives.  Information is available--on the internet, in the newspaper, in magazine articles, from health care providers, and from family and friends.  People with HIV need one place to go to get comprehensive information about their disease.  Just like a pregnant woman buys a book to tell her what to expect when she is pregnant, the person with HIV needs to know what to expect as they make their way along the long bumpy road to living with a deadly but manageable illness. 

The sections are not intended to be read all at once.  Most likely, you will want to read a section whenever you come across a word that you are not familiar with.  You may never need to read some sections at all.  The important thing is that the blog is here to answer most of your questions about HIV and you will not need to ask others, who may not know the right answers, to answer your many questions. The blog is not intended to take the place of discussion with your HIV provider about your disease.

Those who inform themselves about their illness do better than those who do not.  Read as much as you can about HIV, without going overboard.  Take a little bit of time each week to do some reading or researching the subject.  Use common sense when living your normal life--get at least 8 hours of good sleep every night; eat nutritious foods; stay away from street drugs, excess alcohol, and smoking; and avoid people who cause “drama” in your life.  Keep working or going to school, if possible, as your career and work life will give you something big to focus on other than your illness and give you the money you need to comfortably survive and enjoy life.  

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Living with HIV won’t be easy.  Some days you will feel hopeless and overwhelmed and, on those days, it is important to be around friends or family that you can talk to. If you have no one you can talk to, there may be social groups made up of those with HIV in your city.  Be honest about your difficulties and share your struggles with others. Others won’t know you need help and support unless you ask for it.  

Whether you know it or not, others around you are watching you and you will be a role model for them, when they struggle with issues at other times in their life.  They will remember your struggle with HIV and how you managed to survive.   You will want others to think of you as an example of courage, determination, and strength, despite all you had to do to take care of your HIV.

To use well-worn cliches, take one day at a time and just put one foot in front of the other.  The next day wlll be better. Remember, you are not alone in your battle to fight HIV.  

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By the way, I welcome your comments and suggestions. Please know that the views I express in these pages are my own and do not represent the views of my employer. The health information presented here is not meant to substitute for the expertise of your health care provider.

Source:

Center for Disease Control and Prevention, Divisions of HIV/AIDS Prevention: HIV in the United States: At A Glance (Fact Sheet). Last modified and reviewed March 14, 2012.