Living with LUPUS [1]

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I thought it might be useful to start a series of book chats that deal with some of the lupus literature that’s out there. It will also make me actually read these books, instead of just searching through the index for whatever it is that I have a question about. If you have a copy of the book, follow along with me as I read and then we’ll have a dialog in the comment section. If you don’t have a copy, and your local library doesn’t have a copy, you can get one through the Amazon link, or just read what I have to say about it. It will be good for me to really go through these books in depth. I will try and pull some online references that are appropriate to each chapter.

I’ve read the first chapter of Living With Lupus: All the Knowledge You Need to Help Yourself by Sheldon Paul Blau, M.D. with Dodi Schultz. The last time I looked at the Amazon link it had a used copy for a penny. I’m reading the first edition, so if you have the second edition, you can let everyone know if there’s anything new.

Chapter One of the book is called In Their Own Words: How It Began. In this first chapter, Dr. Blau introduces seven women and gives a brief explanation of how they first discovered that they had lupus. Each of the women have a very different initial experience, but it is usually as Dr. Blau says,

The first experience with lupus is often recognized only in retrospect – seen at the time as something else or, often, simply an enigma. Only when lupus is finally suspected and diagnosed may it be clear that events that took place months or even years earlier were actually – or, at least, possibly – signs and symptoms of lupus, or that seemingly unrelated incidents may actually have been connected.

I know that my wife has recently been writing about her childhood and her initial lupus diagnosis, and she now believes that many of her early medical incidents were lupus related.

The stories of the seven women continue to develop throughout the book. Here are their names and initial symptoms:

That’s the first chapter of the book. What are some of your reactions, or can you share some of your initial experiences with lupus?


1,202 thoughts on “Living with LUPUS [1]”

  1. I’m new to this group. I am co-facilitator of the Fort Worth Lupus Support Group, North Texas Chapter of the LFA. We are currently planning for our annual symposium to be held Oct. 27th 1-4 Pm at the University of Texas SW Medical Center.
    Along with the topic of Book Talk, might I put in a plug for my own book about my experiences with lupus, which was published by PublishAmerica in 2005. It’s Diagnosis: Lupus: The Intimate Journal of a Lupus Patient and is currently available on Amazon.com. I will attempt to embed a brief synopsis here:

    When she was suddenly assaulted by myriad baffling symptoms of joint pain and extreme fatigue, the author embarked on an intensive search for diagnosis and treatment of what would be diagnosed as systemic lupus erythatosus, a little-known autoimmune disease that promised to destroy her body, her mind and her spirit. From the pages of her intimate daily journal, we travel with her through chronic joint pain, frustration anger and grief for her former self to her current state of remission. Far from being a litany of complaints, the author’s pages reveal her unexpected spiritual growth an d gratitude for life itself, and she hopes she can be of help to others who suffer from this disease or other chronic illnesses.

  2. Thanks for joining lupusfamily, Marilyn. I’m going to pick up a copy of your book and share it with our group here in Fresno. I also put a link to your blog in the blogroll here. Hope you don’t mind.

    Was it your joint pain and fatigue that led to your diagnosis, or was it another symptom?

  3. Thank you, Jeff! I’m always happy to meet others who have lupus and/or are interested in this disease. And of course, I don’t mind your putting me on the blogroll…..I’m probably one of the most computer-illiterate people on the planet, so any help in the tech department is greatly appreciated.
    As for my first symptoms of lupus, they were indeed fatigue and joint pain. Even my collar bones hurt; my wrists felt like they were on fire when I tried to put on my watch or bracelets, and my knees suffered, too. And the fatigue? Overwhelming. Yet I had to work….I got up at 5AM and took a hot bath to reduce the pain in my joints, then ate breakfast so I could take the pills which didn’t seem to be doing any good, then went to work. Sometime around these years, I also went back to school to get an Associates Degree in Mental Health, which I have never used, but it helped me with my own problems, lol! What I’m experiencing now with cognitive defects is lack of concentration, but that may be merely due to my age….I’ll be 70 in April. Sometimes it’s hard to sort out life with lupus or just life, period.
    I hope you enjoy my book.
    Marilyn Morris

  4. My initial experience: I was ‘well’ as well can be :) One day I woke up with what felt like a hangover, except I hadn’t drank anything the night before. The pain in my head increased exponentially, daily, after seeing my GP, 2 neurologists, I was diagnosed with chronic daily headache. Except that I kept telling them, it’s like no headache I’ve ever had. I knew it wasn’t a ‘headache’. But all my scans, MRI’s etc. were clean, no tumors etc. All the meds they gave me for my head did nothing, migraine meds wouldn’t touch it. I knew something was definitely wrong. This went on for months, along with me hitting the ER for excruciating pain.
    One day I woke up and I couldn’t raise my right arm. I tried to get up out of bed and it was like my body was not my own. The pain in my joints was unbearable. It hit me just like that, all at once. I got in to see my GP who did no blood work and he told me that if I have pain in all my quadrants, I have fibro. I went home in tears. I read up on fibro and asked my doc to give me the tender point test, he said no, it’s subjective. I got so bad, I couldn’t walk without help, he drew blood and called me in and said, “I’m sorry, you have lupus”. I asked about the fibro and he said, oh no~you have a real diagnosis now. Looking back, I should have ran right there.
    Fast forward to now, I have a great rheumatologist who cares :) , am diagnosed with lupus~suspect; I have only 3 of the criteria, dermatomyositis, and palindromic rheumatism. Since the plaquenil has kicked in my joints are a lot better, but I’m still having more bad days than good. They are just BETTER bad days, lol. I need my cane less. I’m in a flare now, but now that I have a correct diagnosis and care, I know I will be OK. I have faith.
    That’s my very condensed story!
    Michelle

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