LUPUS, in a nutshell

Every disease, everything that ails us, usually has a descriptor, a very easy way of describing it. and here is a lupus descriptor that is a very basic. Future articles will expound on this video:

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Oral dryness in lupus? Sjogren Syndrome

Do you have a dry mouth or difficulty swallowing? Does your mouth feel like it’s been stuffed with cotton balls and you can barely speak?  Or, if you can speak are you understood? If so, I’ll guess that you don’t stray far from home without a water bottle.

Not always found in lupus, this condition of dry mouth-or xerostomia- is a hallmark of Sjogren’s Syndrome, another autoimmune disease that often is found in lupus sufferers.  This time, the cells of the immune system have set their sights on and mount their attack on the mucous-producing, or exocrine glands, thinking they are foreign invaders, when, in fact they are ‘self.’

The exocrine glands we speak of here (there are others) are the salivary glands,  abundant around the mouth and jaw. Very often, a dry mouth can be caused by medications, but this dry mouth is worse-Wait a minute, is a contest! A chronic dry mouth is HORRIBLE-whatever the cause. Continue reading

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A little background here, but a just a little. I wasn’t aware until now that something I’d seen on the news that made me feel warm inside had become controversial. Apparently a contestant for Miss Colorado spoke about her passion for nursing in the talent competition-no bathing suit, but scrubs and a stethoscope.

Well, I thought, ‘how wonderful’ for when I practiced nursing, I felt so strongly that nurses should toot their own horns that I wrote articles in support of all that nurses do. Apparently, my beloved profession, which required so much knowledge and skill and I can practice no more, was trashed on “The View.”

Initially my reaction was vindictive, and “I’ll teach them,” “I’m was no handmaiden to the doctor,” “We’ll see about your bedpan!” Then, reality got to me, and I realized how teachable a moment this was. Teach Joy Behar that nurses are SO much more than “handmaidens” who borrow stethoscopes from physicians to look important. THEY USE THEM.”

This reminded me of an aritcle that I wrote years ago, entitled “Just a nurse.” I hope no one needs a nurse today, but if you do, they are there for you!

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Interview with Dr. Donald Thomas-lupus and Sjogren’s Syndrome

Comprehensive, yet easily understandable, this interview with Dr. Donald Thomas, M.D. discusses 27 secrets to living a better life with lupus and other and other autoimmune diseases. His book, “The Lupus Encyclopedia” needs to be in the library of every lupus patient.

Continue reading

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Manage chronic illnesses before they manage us!

Some of us have the dubious luck (?) of having several chronic illnesses. The following post is a guest article addressing life with chronic illnesses. Written by Larry Berkelhammer PhD, we learn what Dr. Berkelmmer learned as he lived much of his life with mysterious chronic illnesses and finally was told, after much testing, that all was not in his head. Now he‘practice what he preaches’ as a psychotherapist.
He has a complete channel of videos on YouTube, which I found incredibly enlightening, at and d his website is at:

Giving and Receiving Improve Health and Wellbeing

By Larry Berkelhammer, PhD

 The helpless victim mentality

In all my years of working with people who were living with chronic, debilitating medical conditions, the single most significant problem I observed was the longer someone had been in the system and being cared for by various healthcare providers, the more likely they were to have adopted a passive, helpless, victim mentality. Even the term patient implies passivity. My goal has always been to empower those that are seeking help to become proactive in their self-care and in their lives in general.


For those of us who need to spend considerably more time than the average person going to medical appointments and engaging in self-care, it is easy to become somewhat self-absorbed. One of the things I learned was that the more self-absorbed we are, the worse our health outcomes, and that the more engaged we are with others, the better our health outcomes. The opposite of self-absorption, which is curiosity and open-heartedness toward others, correlates with better health outcomes.

How can I help?

The most common question asked of me in my talks and in the Q&A column on my website is some version of: How can I get my family member or friend to become proactive and to practice better self-care?

My answer starts with identifying personal life values and goals and then acting in harmony with those values and goals.

However, I have found the very best solution to be: Find an opportunity for your loved one to help others. The act of serving others is very empowering and contributes to a sense of mastery and wellbeing. It may sound strange, but for some people it can be hard to become proactive in managing their own health until they begin to help others. This is most likely the result of greater valuing of oneself when helping others. In other words, when people have low self-esteem they may not be proactive because they don’t think they are worthy of that kind of attention and care. Simple daily acts to help others can make enough of a difference to their self-esteem to catalyze a proactive approach to self-managing their lives.

Two essential practices to improve health and wellbeing

In my thorough literature reviews and years of working with people living with chronic health challenges I left no stone unturned in order to uncover the variables that contribute to improved health, beyond the usual suspects such as diet, exercise, sleep, and stress management. I discovered two things that consistently correlated with better health and wellbeing. After controlling for confounding variables, research clearly pointed to the importance of the following two variables:

  • Social support
  • Meaning and purpose.

Social support can take many forms, such as family, friends, support groups, group therapy, co-workers, volunteer projects, and relationships involving a shared professional or recreational interest.

Meaning and purpose can come from performing any activity that provides us with a sense of accomplishment. It can be found by working toward personal goals or living in harmony with personal values. It can even be found by redefining undesirable external circumstances that we are powerless to change.

Serving others in some capacity seems to help us to meet our needs for social support as well as meaning and purpose. Considerable research has found strong associations between altruism and health. Altruistic acts help us to feel better about ourselves and about life in general. Those acts tend to give our lives meaning and purpose. When we do volunteer work within our communities, social support is one of our rewards.

Being part of something larger than ourselves

The meaning and purpose and social support that we receive from performing altruistic acts in turn contribute to decreased suffering from chronic symptoms such as pain, fatigue, and malaise. One reason is that helping others takes our minds off our own complaints. Another reason is that helping others leads to feeling better about ourselves, which then serves to reduce emotional distress and its concomitant physiological stress. Still another reason is due to the resulting improved self-care, which results from the improved self-esteem.

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Support for this newbie!

My journey with autoimmunity began years ago with a diagnosis of Sjogren’s Syndrome. Reaching the diagnosis was no joy ride! So, at the ripe old (?) age of 19, I had to travel the road of a chronic illness.

Attending a support group was a no-brainer. For sure, experienced members would guide me, a newbie, through the maze of tests and give tips and ways to cope. Well, not exactly! At 19, I was the new kid on the block, with emphasis on the word, ‘kid!’ The majority of other members were my elders by about 60 years, at least. They no sooner seemed to understand my life and my desires to be young and single, than I understood their grandparenthood.

Needless to say, we managed our diseases differently, but I was struck by the degree of difference. We had the same dry eyes, but the degree was different so the treatment differed. I had a dry mouth from time to time, but I failed in my ability to see that a dry mouth could get so bad as to affect dental vitality. All I needed was an artificial tear that was WET.Yet, I sat through many hour listening to the virtues of preservative-free artificial tears; some even made them themselves! Why in the world would anyone want preservative-free artificial tears? Now that I’m reliant on them and not able to tolerate anything BUT preservative-free tears, I am speechless.

Try as I may, I wasn’t able to ‘wrap my head’ around the need for mouth moisturizers;  brushing and flossing twice a day was enough, right? WRONG. Having just lost 6 teeth and in the process of paying for expensive implants or permanent bridges, I now see that this complication was a buildup of 60 years of a dry mouth IN SPITE OF taking incredibly good care of my choppers. All I can say is make some remark about the nature of the ‘know-it-all’ kid in me! Then, as quickly as it arrived as Sjogren’s Syndrome, the disease morphed into Systemic Lupus Erythematosous. I feel badly for not understanding, not TRYING to understand how something chronic like Sjogren’s Syndrome could run livers then, but I sure see that lupus does, now. Now, I see the ‘light’ so easily  as Sjogren’s has morphed into SLE and that is running my life now!

Lupus and Oral Health (

Sjögren’s syndrome victims and supporters get ready for their first World Day (koolnews.wordpress.c)

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Venus Williams: What Is Sjogren’s Syndrome? – ABC News

Venus Williams: What Is Sjogren’s Syndrome? – ABC News.

Imagine all that Venus Williams has accomplished in spite of the fatigue and symptoms of her autoimmune disease, Sjogren’s. I saw her leaving Wimbledon this morning after a match, and she was ailing. Granted, she had just lost and was not her exuberant self, but this woman was having a hard time. VENUS, WE APPLAUD YOU!

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