The progress on the blog section is still going smoothly! I am very excited about this feature. The beta ( test ) version is projected to be released by the first of May. Look for more information about this feature in the next newsletter. Thanks for your patience!

- Barry

How can you help your doctor help you?  It is very simple—keep records, keep records, keep records.  When you are battling an autoimmune disease (or two or seven for that matter), the amount of information relating to your illness and its treatment can be staggering.  Every doctor that you see or medical test that you have done adds one more piece to your medical jigsaw puzzle.  Unfortunately, it is very unlikely that any one doctor has access to all pieces of that puzzle at one time.  But what if he did?

Imagine how much more your doctor could offer you if he had every bit of pertinent information about your case before him in one organized place.  It would be like having The Book of You.  By simply thumbing through it, he could review your medications, the results of past medical tests, the outcomes of procedures or surgeries you have had done, and much more.  With this wealth of knowledge about your individual situation, your doctor may see patterns that he normally wouldn’t, notice problems with your treatment or underlying issues that were hidden before.  All of this could change the course of your treatment in a small or very large way.

So clearly it would be invaluable if there was such a thing as The Book of You.  Well, there can be and you can create it!  Here’s how:

1)     Hunt and Gather: Starting today, I want you to become a hunter/gatherer with a mission to hunt down and gather as much documentation relating to your illness as possible.  This includes results from lab tests, doctor’s notes, pathology reports, and even photographs.  Anything that is relevant to the diagnosis, treatment or progression of your disease is fair game. 

     You may already have much of this documentation stuffed in a drawer or hidden in a file cabinet somewhere.  If so, find it and dig it out.  If you don’t, this will require a little bit more work and time.  Start by making a list of all of the physicians that you have seen who have been involved in diagnosing or treating you.  If possible, find their current office telephone numbers and put in a request for all of your medical records.  If you haven’t already, you will probably have to sign a form before they will release your records and some offices will charge a processing fee.  I have been charged anything from a flat fee of fifteen dollars to 30 cents per page.

I recognize that obtaining all of your records may not be the easiest task in the world, especially if you have been on this journey with autoimmunity for many years.  Memories fade, doctors move, records are destroyed; but with a little concerted effort, you will be amazed at what  you can find.  If you hit a few brick walls, don’t be discouraged.  Simply find as many records as you can. 

2)     Organize:  Once you have gathered all of the pertinent documentation, it is time to make it useful.  No matter how much paperwork you have, it is not going to offer you any benefits if it is in one big messy pile in a drawer.  It needs to be organized in a way that makes the information easily accessible.  This can be done in several different ways and depends upon the amount of documentation you have to organize as well as its content. 

Some people prefer keeping their records in a file cabinet, but I favor using binders, even if it takes several of them.  This way the information is portable, allowing you to easily bring your records to each doctor’s appointment.

As to how you organize the information within the binders, that is more of an individual decision.  If you have only a few papers, you may want to simply place them in chronological order.  However, if you have a lot to organize, or have a complicated case, you will probably want to subdivide the information.  Using some cheap dividers you can break up your binder into many different categories, including type of illness (if you have multiple diseases), subspecialty (example: neurology, endocrinology, nephrology, etc.), or physicians name.  No matter how you organize your binder it is best to keep the information in chronological order within each category. 

3)     Create: After collecting and organizing all of the information that you can find from your doctors, there is one more step to becoming a true superstar patient.  It involves creating a journal or log of your experience and can be incredibly useful to your physician and to yourself. 

This does not need to be a book of literature, but can simply be a collection of lists.  The content of these lists should include the following:

Medications:  Make a list of all of your current medications, the dosages, as well as how and when you take them (example: Synthroid, 125 mcg, taken by mouth 1x per day).  If your doctor switches prescriptions or dosages, jot down the date and the change in your journal. I would highly recommend keeping the current list of medications at the top of all of your medical records, because almost every doctor and nurse will ask you for this information. If you want to be very proactive, you can even keep copies of this list and hand them to your doctor at each visit.  If possible, it would also be helpful to compile a list of your past medications, the dates you took them, any side effects that you may have had, as well as the date and the reason for their discontinuation.    

Major events: Keep a log of any major events that may affect your disease or its presentation.  If you have an accident, a surgery, or even a highly emotional event, write down the date and a brief description of the event.  The memory may be so vivid now that you think you will never forget the date or the event’s effect on you, but ten years from now the memory of the details might fade.

Symptoms: Make a list of all of your current symptoms.  If you like you can even keep a symptoms journal, jotting down the date, time, description, and severity of the symptom.  Over time you may find very informative patterns that would otherwise be missed, especially when you have a list of medications and major events to compare it to.      

In summary, becoming a superstar patient means becoming an expert on You and your own individual medical history.  By either knowing the relevant information or where to find it, you can give your doctor invaluable tools to facilitate your treatment.  However, while having these medical records is undeniably useful, the process of finding and organizing them may sound daunting.  If this is the case, please don’t be distressed.  You can start small and start from today.  If you don’t want to find old records, simply request them from your doctors from now on.  If tracking your symptoms and major events sounds overwhelming, begin by making a current list of your medications.  To be a superstar patient it is not necessary to be perfect, only to be proactive.  This is your body and your health and you can be an integral part of your own medical treatment.

Until next time,

Amanda

The Autoimmune Connection*

Undoubtedly, the last book that I chose to review—The Lupus Recovery Diet—could be perceived as controversial and even a little bizarre.  It is for that reason that I decided to spotlight The Autoimmune Connection by Rita Baron-Faust and Dr. Jill P. Buyon, a book that is highly mainstream and filled with medical support.

Synopsis:

The Autoimmune Connection thoroughly dissects several common autoimmune diseases with a very distinct focus on the female patient. According to the authors, it is in fact the first book to place such emphasis on the issues of women with autoimmunity.

The Autoimmune Connection starts out with a short but jam-packed tutorial on the immune system, including how it is supposed to work as well as how it may break down in cases of autoimmunity.  There is also a brief exploration of theories relating to why the sufferers of many autoimmune diseases are more prevalently women.

The real heart of the book then begins, tackling over twenty individual autoimmune diseases that commonly affect women.  Each illness is approached in mostly the same format—an explanation is followed by a description of the possible causes and symptoms of the illness, the path to a diagnosis, the treatments that are currently available as well as those that may be offered in the future.  There are also sections explaining how women are particularly affected by each illness at different stages of their lives.  Sprinkled heavily throughout each dense chapter are touching and informative vignettes from women who are on the forefront of the autoimmunity battle, either because they are fighting an illness themselves or because they are family members of someone who is. 

The last chapter investigates and recommends how a patient can best approach and traverse the labyrinth that is our medical system.  Included is a very useful section on choosing the appropriate doctor, explaining which medical specialty is best suited for the treatment and management of each autoimmune disease.  The authors also explain how to be the best patient one can be, suggesting several helpful techniques on becoming proactive in one’s own healthcare.

The Autoimmune Connection closes with a brief afterward by Dr. Denise L. Faustman, an Associate Professor at Harvard Medical School and a fellow survivor of autoimmunity.  She provides an encouraging glimpse into the future evolution of the perceptions and medical treatments of autoimmune diseases as well as her hopes for this progression. 

Finally, Appendices are also provided, listing the contact information for support groups as well as other books recommended by the authors.

Pros:

1) Reliable Information: The Autoimmune Connection is without a doubt an extremely informative and well supported book. In addition to being written by an M.D. and an award-winning journalist, the contributors are fifty doctors who are experts in a wide array of medical fields.  Because it was written in 2003, there may be a small amount of  outdated information; but overall, you can feel assured that what you are reading is coming from some of the best minds in the world of autoimmunity.

2) A Female Focus: While much of the content is pertinent to both men and women, there is a very clear and consistent focus on how autoimmunity specifically affects women.  This is the only book that I know of that explores the evolvement of so many autoimmune diseases through each stage of a woman’s life—from puberty through pregnancy, menopause and the life beyond.

3) Perceiving Autoimmunity In A New Light:  Much of this book strives to find the interrelatedness between the many autoimmune diseases, viewing them as possibly one illness with many different presentations.  I found this approach to be very thought-provoking and unique.  Maybe the authors have stumbled upon a key to solving the riddle of autoimmunity and we should all be focusing on what those with autoimmune illnesses share instead of what they don’t.

Cons: 

1) Convoluted Path To The Truth: If you are looking for a simplistic or elementary exploration of autoimmune illnesses, you may want to steer clear of The Autoimmune Connection.  You will be forced to delve into the realms of immunology and genetics, and may sometimes feel like you are slogging through medical mud.  While I respect the authors intent to provide depth and completeness to their writing, I fear that they may have lost sight of their prospective audience.  By getting bogged down in terminology and overly technical matters, they ran the risk of frustrating and scaring off a good deal of readers.  By using more accessible language and examples, I believe that they would have reached a wider audience without sacrificing the utility of the information.

The Verdict: 

While I found some of the explanations to be needlessly arcane, The Autoimmune Connection is undeniably chock-full of helpful and provocative information that comes directly from some of the foremost authorities on autoimmune illnesses.  The range and scope of this book is truly impressive while the focus remains clear throughout.  The women of autoimmunity are the centerpiece of this story from beginning to end.  If you are one of these women, I would recommend adding this book to your shelves, even if you simply use it as a medical reference from time to time.

If you would like to contact me about this review or have another book that you would like me to read, please contact Amanda at Amanda@autoimmunitycommunity.org.  Thanks and I hope you enjoy this book!

Important Note:  Please remember that if you wish to pursue any of the medical treatments outlined in The Autoimmune Connection, always consult your physician first!

*Baron-Faust, Rita, and Jill P. Buyon, M.D.  The Autoimmune Connection.  New York: McGraw-Hill, 2003.