Tag: Sjogren’s Syndrome

Being Present in Healing

Posted on by KM Huber in Consciousness, Inspiration, Lupus, Spirituality

My recent trip to the American West was, among other things, a test of the holistic approach to disease that I have followed for the last 33 months. My approach is perhaps best described within Deepak Chopra’s definition of quantum healing:

“…the ability of one mode of consciousness (the mind) to spontaneously correct the mistakes in another mode of consciousness (the body). It is a completely self-enclosed process” (Quantum Healing).

Essentially, this mind-body consciousness is a type of “intelligence” (Chopra’s term) attempting to restore balance in a body that is diseased. It was this “intelligence” that made sense to me when I first read Chopra’s book in the early 1990s and again in 2010 when I removed myself from medical care.

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Undoubtedly, it takes a certain amount of desperation and frustration to walk away from medical science, which is not a route that Chopra, a medical physician, advocates. Rather, he argues that medical science can be a viable partner in working with the innate intelligence of the mind-body connection, with the following caveat:

“A man-made drug is a stranger in a land where everyone else is blood kin. It can never share the knowledge that everyone else was born with” (Quantum Healing). In other words, every cell in our body has a kind of intelligence with specific tasks and abilities. All cells in the body work together, ever adjusting to what is occurring.

The inherent intelligence within the mind-body connection is one that medical science has yet to duplicate but it does not mean that medical science cannot assist us in our healing. It can and does–for many. Regardless, awareness of the mind-body intelligence can change our lives just as being aware that every decision we make and every thought we attach to affects our physical body directly and immediately.

That is where stress starts, and with increased stress comes imbalance, and when the imbalance is great enough, there is disease and yes, sometimes irreparable damage. The state of disease for anyone is unique but also may be integral to the individual’s purpose as Anita Moorjani suggests:

“The reasons for…illness lie in [our] personal journey and are probably related to [our] individual purpose. I can now see that my disease was part of why I’m here, and whether I chose to live or die, I wouldn’t be any less magnificent” (Dying to be Me).

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Disease as a state of health is how one has lived and continues to live. Just as lupus is not cancer—although in both the body is under attack and in both the autoimmune system plays a major role—directing disease is as unique to the individual as is the optimal level of health outcome.

What that outcome is and how long it may take is just as individualistic as is the degree of recovery. At the very least, an awareness of the inherent intelligence of the mind-body connection provides an alternative to  dealing with disease. At the very most, it can change drastically the course of a disease.

“The reason why not everyone manages to take the healing process as far as they can go is that we differ drastically in our ability to mobilize it” (Chopra).

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My experience with “incurable” disease is limited to lupus and Sjogren’s Syndrome, the current names for the disease that has been present in my body for at least 35 years. Some medical experts have told me autoimmune disease has been present since childhood. As I am now a sexagenarian, that’s a long time.

My last rheumatologist told me, “There’s just so much wrong with you and it’s been going on for so long.” That is probably still true for that rheumatologist and the entourage of doctors “on my case” but it was not true for me.

I was seriously ill, and I knew it, but I believe “when we get in touch with that infinite place within us–where we are Whole–then illness can’t remain in the body” (Dying to be Me). My intention is not to be smug or simplistic–nor am I speaking of mere positive thinking–my awareness of the inherent intelligence within my body-mind connection opened me to how I live as well as how I have lived. It gave me a place to begin some 33 months ago, and for me, it has meant drastic changes.

My life does not resemble the life I once knew, nor will it ever. It is not a life free of disease—not yet and maybe never will be–but it is a life aware of the possibilities in each moment I have. It is a life lived from within, and only now do I see the world as it really is, moment by moment, the only reality I ever have.

On a Slow Boat to Fitness

Posted on by KM Huber in Lupus

“You may be a wonderful doodlekit” is the phrase that opened a February blog post a year ago, almost to the day. It was, of course, an unsolicited statement. In the year that has passed, I have not pursued whether or not I am or have ever been wonderful, a doodlekit or any combination of the two.

In that same February post, I considered my True Self versus my False Self (Mark Nepo) in light of having to cancel family travel plans and wondered whether I would ever be able physically to travel again. It remains a question but because of my progress this past year, there is a trip in the making. Whether it’s the first of many or the last, there is a trip.

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In preparation, I have been increasing my physical activity, which is not to say the trip will require any rigorous hiking or extended walking. That is for most people it will not. For me, just being in airports will be an outing. Although I have made significant progress in mitigating my lupus and Sjogren’s syndrome symptoms, one of the reasons for my success is limited physical activity.

It is no exaggeration to say my exercise program began with walking around one room and then another, eventually graduating to short walks in a park with Cooper. My current recovery is in its third year, and now, my personal best is a thirty-minute walk, with most of my walks right at twenty minutes. Frankly, I’m delighted.

Heron on Turtle Row 0213
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It may not seem like much but on my way to a level of health that is realistic after decades of disease, I appreciate progress in inches. As I have mentioned many times on this blog, the biggest advantage to chronic illness is that it keeps one physically in the moment, for no matter what occurs on one day, the next day dawns as if the previous day never existed. Frankly, I suspect that is true with or without disease but chronic illness provides a 24/7 mirror.

Having achieved a daily 15-20 minute walk for a month without any significant increase in inflammation or stress on my joints has me giddy with success. Now, I am attempting yoga. My introduction is through Peggy Cappy’s Yoga for People with Arthritis DVD. I highly recommend it.

While I have become accustomed to the fact that the line in the sand is in a different place every day, in my eagerness to begin every day anew, I have a tendency to be idealistic, my mantra in almost every project I attempt. Yoga is no different.

What I appreciate about the Cappy DVD is that it is divided into sections of different poses as well as warm-up exercises. In addition, there are great exercises for hands and fingers, perfect for anyone who uses any kind of electronic device. In the short time I have been doing these exercises, there has been a marked increase in my flexibility, so much so that I ignored the line in the sand.

Wood Stork at Waverly 0213
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Rather than allow my body to adjust to the sitting poses and warm-up exercises, I went on to try the standing and sun salutation poses–Warrior One, Warrior Two and even Sitting Dog–within a few days my inflammation increased to a level I had not known in over a year. Not the fault of the DVD or any of the yoga poses just the False Self ignoring the True Self and each day’s line in the sand.

My bones and joints have taken a pounding for decades, first with one disease and then another, yet there is still an optimum level of health available to me. As Deepak Chopra says in Quantum Healing, chronic illness and aging have an effect on what that level of health will be. I see it as progress in inches but it is progress, nonetheless.

As I mark this first year of contemplating my True and False Selves, I have made enough progress to begin yoga, one pose at a time, and to attempt a cross-country trip as an avowed Uni-Tasker–one task, one moment. Maybe someday, a doodlekit….

Getting Physical

Posted on by KM Huber in Lupus

Sjogren’s Syndrome has had my attention these last few days. Sjogren’s affects gland secretion, which means there is a general dryness throughout the body. It is often in the company of lupus so it’s been a joint effort. However, I’m happy to report that I have remained more in the moment than not and am simply working through my symptoms—dry eyes, dry mouth, fatigue–as they make themselves available. It is intriguing.

In examining these two autoimmune issues, I focus on what is occurring throughout my physiology rather than considering cause and effect. This began two years ago when I walked away from traditional medicine, and with a little knowledge of quantum healing, I began creating a diet for myself that would not make me sicker. I needed a distraction and food, which had been such a comfort, seemed the logical choice.

It was a no-brainer to eat whole foods and eliminate processed/refined products but I discovered I could not tolerate all whole foods, especially carbohydrates. Ultimately, I stopped eating yeast, gluten, dairy, and soy but mostly, I stopped eating almost all sugars, including fruit. I ate meat and still do, infrequently, but I receive more than my required protein amount from almond butter, plain goat’s milk yogurt, eggs, broccoli and even almond cheese, just to name a few sources. I quickly discovered that getting enough protein is not an issue.

Mostly, I found myself engaged in an experiment for health and not a diagnosis for disease. My physiology became my laboratory. As my sugar and high carbohydrate intake dropped, my joint pain began to decrease. Yet, not all sugars are equal. For example, I tolerate apple cider vinegar but no other. When I discovered that apple cider vinegar is a main ingredient in Eden’s Organic Brown Mustard, I finally found my condiment. This mustard is a marvelous addition to any sandwich.

Bread proved elusive until I learned of Paleo Bread—almond and coconut are my preferences—yet another source of protein for me. While the bread is expensive,  a local health food store is providing me a great discount. The bread is a significant source of fiber, contains no refined starch and is extremely low in carbohydrates. Yes, it is an acquired taste but like my ever-changing physiology, my taste buds are not what they were.

I discovered that change at my 60th birthday dinner. The waiter brought a complimentary birthday chocolate sundae, which I ate because it was my birthday and because I wanted to see what reaction I would have. Immediately, I was overwhelmed by the taste–too sweet, too much. For the next few days, that taste stayed with me, mostly in the form of carbohydrate cravings. No one is immune to the physiology of them.

In response, I ate more almond butter and drank more chamomile tea (with Stevia) until my physiological system evened itself out. By the way, the only natural Stevia that I know of is SweetLeaf; all the others have either sugar or a sugar substitute in them. Every time I meet up with sugar, intentionally or no, my physiology alters significantly. This may have been true all my life or not. Doesn’t matter.  I discovered a connection.

In quantum healing, perfect health is an ideal, of course, but its heart is “…the junction point between mind and matter, the point where consciousness actually starts to have an effect” (Deepak Chopra). That junction point is when “…quantum healing moves away from external, high-technology methods toward the deepest core of the mind-body system. This core is where healing begins” (Chopra).

My experimenting with nutrition is only the beginning of my understanding quantum healing. Mine is an undertaking that many question to which I can only respond that for the first time in 30+ years I have a connection to my body that is not external or chemical. It is right for me. I still have Sjogren’s and lupus symptoms–no worse and perhaps no better–I haven’t paid attention to degree of discomfort for I have been busy in my physiology laboratory.

“The healing mechanism resides somewhere in this overall complexity, but it is elusive. There is no one organ of healing. How does the body know what to do when it is damaged, then? Medicine has no simple answer….A man-made drug is a stranger in a land where everyone else is blood kin. It can never share the knowledge that everyone else was born with” (Chopra).

Yet, I am not unrealistic, either. I do not believe I will attain the health of a sexagenarian who has generally taken good care of her emotional and physical needs. I was not that person for 58 of my 60 years; I am only that person now. Thus, whatever healing emerges is from an awareness born of the mind-body connection. For me, it is about appreciating the incredible complexity that is my physiology and doing everything I can to support my body in its never-ending quest to provide me health. I am much more careful in how I live.

Our physiology communicates mainly through pain or discomfort but it is in the examining of the communication that we gain a broader perspective of our physical self. Physically or emotionally, we do not operate well on deprivation. No living organism does. Quantum healing is going beyond physiology—cells, tissues, organs, and systems–to that mysterious “junction point between mind and matter” where healing begins.  It is intriguing.

(All Deepak Chopra quotes excerpted from Quantum Healing: Exploring the Frontiers of Mind/Body Medicine, New York: 1990, Bantam Books)

The Power of Story

Posted on by KM Huber in Lupus, Writing

Lupus is a creation of mine, its own story really, not one of which I am proud, as its writer, but I have been its source of life for the last 35 to 40 years, maybe even longer.

It is not possible to note the day my lupus gene switched to on nor is it possible to know why I have the gene or what activated it, if anything. It simply is. That part of the story has never mattered to me, even before I knew about the Tao or Zen.

It took me most of my life to understand I am not my lupus and that autoimmune disease is its own story, one steeped in imitation and deceit, usually disguised as flexibility and malleability. Separating what is the lupus story from all I am has been delicate and sometimes, seemingly impossible.

Through the Tao and Zen, I have come to believe my body is my soul having a physical experience, which gives me, a writer, the luxury of viewing lupus as story, a structure I do understand. In all the ways I have viewed lupus, it never occurred to me to view it as a story until very recently.

Lupus really does have plot points, conflict, a protagonist and an antagonist, all tools of my trade on my turf. I just may have the advantage here for the very first time.

In some ways, I have had a long life with lupus, if knowing lupus by other names counts. Lupus’ ability to mimic so many other illnesses along with my gullibility in believing one misdiagnosis after another are extraneous chapters but there is this: my heart never believed any of those labels.

In the lupus story, my heart is the protagonist and my brain or ego is the antagonist, the one that drives the conflict in every story, and all stories have an antagonist and a protagonist locked in a conflict box.

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As the lupus story opens, my immune system produces antinuclear antibodies to fight infection and viruses, just as it should, until we reach the first plot point: a normal immune system turns on itself and begins to attack the very body it defended for years, for no apparent reason.

This relentless war for the body continues for years under various guises–multiple sclerosis, migraines, mixed connective tissue disorder–until Sjogren’s wipes out the salivary glands to pave the way for lupus.

As we reach the midpoint of the lupus story, the brain discovers that it, too, is under attack and turns to the last bastion of hope, the open heart, the remaining connection to the spirit that animates the soul’s body.

I do know that in any story there is one more major plot point before the conclusion, and the lupus story is no different. I don’t know the last plot point nor do I know the conclusion but I have this: the structure of story has given me some of my first moments truly away from the physical battle, and I know I am so much more than the lupus story.

ROW80 Sunday Scheduling 

I finished reading The Night Circus by Erin Morgenstern and may write a review for an upcoming blog post; however a very fine writer, Stephanie Carmichael, wrote an excellent review that you may read here.  I cannot imagine what I could add to this review. The Night Circus is one of the best novels I have ever read and am considering purchasing it (I borrowed it from the library) as it is a book to read and re-read.

I continue to write at least 500 words a day, mostly nonfiction, and I reached my goal of scheduling blog posts so I am not writing to deadline on Sundays and Wednesdays. This next week will be the dismantling of my novel’s first draft, which I plan to have finished by April 22, 2012 as well as a rough outline of its scenes so I may begin “plotting” the novel’s major points. Unlike the lupus story, I actually do know how this story ends.

For the rest of this round, my goal is a weekly total of 2500 words, as I do not know how long it will take to plot the novel so I do not know when I will start the actual writing of the second draft. You may read more about my second Round of Words in 80 Days here.