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Unfortunately, the answer to the question “What’s life really like with Lupus?” isn’t easy to answer. The disease is just so personal. No two Lupus cases are alike due to the wide spectrum of possible symptoms, conditions, and outcomes affecting many systems of the body. And, that makes it difficult to understand this incurable, unpredictable autoimmune disease itself, let alone its impact on everyone involved.

I began my Lupus Diary blog in 2012, just after my diagnosis. Mainly as a way to share how the disease affects me, just one of the millions of people diagnosed around the world, and those who will be diagnosed in the future (after years of wondering).

After all the research to learn about Lupus, I have still been deeply frustrated with the lack of answers and my inability to articulate how the disease was truly affecting me. Without that information:

• My doctors and practitioners who treat me for Lupus would never have the full picture of what it’s like to live with the disease.
• My family and friends who want to help would never really understand how.
• I, myself, would never be able to know and understand my own unique brand of Lupus.

Then One Day…

…I realized that instead of looking for medical literature and articles to explain how Lupus was affecting me, I had to recognize that it is my responsibility to document the specifics about how Lupus was affecting my body—the symptoms between doctor appointments, how I reacted to medications and foods; how Lupus was affecting my mind—the emotional effects of pain and uncertainty; and how Lupus was affecting my spirit—the connection to myself that goes beyond the body and mind.

I needed to gain a better awareness of the effect of Lupus on every dimension of my life.

A Different Way to Write About My Life with Lupus

So, in 2015, I decided to begin writing in a new format for my personal diary using a shorter body-mind-spirit format, like you see here.

It began as a way to help me quickly capture what I needed to say each day using prompts that helped guide my thoughts, even on my foggiest days.

As I had hoped, my personal Lupus diary now serves two purposes:

1. Not only to share a more complete picture with about my ups and downs of life with Lupus; but also
2. To empower me to communicate better with my doctors, my family, and myself.

First, A Personal Diary … and Now, A Book

Unexpectedly, writing in the new diary format for myself and learning so much about the importance of health diaries led me to realize that we all need a way to let the world know what life with Lupus is really like.

So, I decided to share what I’ve learned to help other Lupus patients track their lives, too.

That’s the purpose of my new book, Lupus Diary: Track Your Life with Lupus—Body, Mind, and Spirit. Just published, it’s a companion to my first book, Live a Beautiful Life with Lupus: Habits and Rituals for Thriving with an Autoimmune Disease—Body, Mind, and Spirit. Both books are reflections of my determination to live well and abundantly with this awful disease.

Sharing My Life with Lupus….

I invite you to read my blog posts, under the heading “Olivia’s Lupus Diary Entries,” to get a glimpse into how I’m living my life with Lupus. Because I use the same format as the pages of the Lupus Diary book, it’ll also give you examples of how I write my entries and give you inspiration in knowing that you’re not alone in this battle.

I also invite you to read more about why keeping a Lupus Diary is so important and how easy it is to use the book yourself.

To Learn More….

To learn more about what I’m learning about Lupus, please also visit my other blog, Live a Beautiful Life with Lupus, where I share more tips about thriving with this autoimmune disease from a body, mind, and spirit perspective. From “Learn About Lupus: Did You Know?” snippets and “You and Your Doctor” tips to beautiful life mantras and quotes, I write the site is my labor of love for all of us. <3

If you have any questions or thoughts about this site or my books, please contact me here.

No matter how you feel about diaries and journals, when you have an unpredictable autoimmune disease like Lupus, it’s vitally important to keep track of how the disease impacts your life.

A May 2015 survey of Lupus doctors and their patients revealed a huge gap in how doctors perceive the impacts of the illness.* Doctors participating in the survey reported believing that their Lupus patients only experienced symptoms a few times per month; whereas, the Lupus patients participating in the survey reported experiencing symptoms daily.

That’s shocking, right? How could there possibly be such a gap between our experience and the doctor’s perception? Either they’re not listening or we’re not giving them enough information. Giving them the information about how Lupus affects us isn’t easy unless we systematically keep track of our lives and symptoms. Keeping a diary is one way to do that.

Since it’s so important, why aren’t all Lupus patients keeping a diary?

The problem with regular diaries has been that recording and tracking your health isn’t always easy to manage, especially when you don’t feel well. Specifically, the problems with keeping a health diary include:

• Not sure of what to say, or what’s important enough to say.
• Not easy enough to keep up with on a daily basis.
• Not available on multiple platforms.
• Too time-consuming.
• No way to organize your information with more than just blank sheets with lines.

A New Format to Help

This Lupus Diary format, which I originally created for myself, really helps me overcome the problem of the blank page and has now become an easier way to help me remember all that happens to me between doctor appointments.

I organized it for tracking my health using prompts that guide you to make diary entries without worrying about what to write on a blank page, such as:

• Separate sections for body, mind, and spirit—to help you monitor your health holistically.
• Checklists for tracking your progress with the specific habits and rituals listed in the Live a Beautiful Life with Lupus framework—a reminder to take action to take care of yourself.
• A “Meals” section to monitor how your diet may be affecting your health.
• And more….

Maybe you will find the Lupus Diary book helpful to you.o

The following is an “How to Use” excerpt from the book
Lupus Diary: Track Your Life with Lupus–Body, Mind, and Spirit

pp. 9-10

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How To Use

Based on the framework of my book, Live a Beautiful Life with Lupus: Habits and Rituals for Thriving with an Autoimmune Disease, the purpose of this Lupus Diary is to help you keep track of how you’re feeling in a quick, easy-to-enter format that will be practical and helpful to you as you manage your life with Lupus.

Understanding that the idea of a diary, while important, isn’t always realistic or easy when living with a chronic illness, the Lupus Diary is meant to make the most of your time and energy:

1. The Lupus Diary is designed to be filled out daily, if possible. If not, complete it as often as you can. It’s best to complete it at the end of the day, when you can remember and reflect on your day.
2. The Lupus Diary is organized by the three dimensions of your being—body, mind, and spirit—to help you clearly distinguish what’s happening with each part of your life.
3. In the “Body” section, write about your physical symptoms, vague or specific, as best you can, discussing if they are better or worse than the day before, unchanged, or new. Check off the habits and rituals of the Live a Beautiful Life with Lupus framework (see page 11) that you practiced to soothe your body.
4. In the “Mind” section, follow the prompts to express any cognitive symptoms, emotions, behavioral issues, or feelings that are affecting you that day—whether they are positive or negative. Check off the habits and rituals of the Live a Beautiful Life with Lupus framework (see page 11) that you practiced to strengthen your mind.
5. The “Spirit” section is where you record your pursuits at gaining inner peace and meaning beyond your physical and emotional symptoms. Follow the prompts, and check off the habits and rituals of the Live a Beautiful Life with Lupus framework (see page 11) that you practiced to nurture your spirit.
6. The “Meals” section is where you track what you’re eating and how foods are affecting you. This is also where you record your daily intake of water.
7. In the “Notes and Reminders” section, write any thoughts about the day that you want to remember to discuss with your doctor during your next appointment.
8. The “Gratitude” section is where you write about at least one thing you’re thankful for that day.
9. The “More” section gives you additional room to write freestyle—expressing additional thoughts, expanding on details from previous sections, capturing the aha moments of the day, or simply reflecting on, or venting about, whatever you want or need to say.
10. For quick reference to your Lupus Diary entry pages by date, use the Table of Dates, found on page 13. After completing your diary entry, simply enter the date in the space provided next to its page number.

If you have questions, please feel free to contact me by e-mail at olivia@lupusdiary.com or by using the Contact form at https://www.lupusdiary.com/contact/.

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© 2015-2016 Olivia Davenport and Cabin Creek Publishing. All Rights Reserved