Here  is their invitation to you and a little information about what their afternoon plans to offer:

“The Oregon Chapter of the Scleroderma Foundation has announced that Dr. Catherine J. Markin – a noted specialist in pulmonary disease and critical care medicine at Legacy Good Samaritan Medical Center, and Director of the Legacy Pulmonary Hypertension Program – will present the 9th Annual Cheri Woo Education Seminar ’s keynote address scheduled for Saturday, March 13, 2010 at Tuality Health Education Center in Hillsboro. The free public seminar runs 10am through 2pm.

Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations intended to increase overall education and raise regional awareness of scleroderma, also known as systemic sclerosis.

In addition to Dr. Markin, the seminar is scheduled to present Dr. Anna A. Bar, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at Oregon Health & Science University.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  Justin Elson, DMD, of Gentech Dentist Hillsboro, will speak at the seminar on Scleroderma and Oral Health.

Scleroderma (pronounced sclare-a-derma), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  An estimated 300,000 people have scleroderma, of which 80,000 to 100,000 people in the US have the systemic form of the disease.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.

The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public. Breakfast and lunch are provided with every registration.

For more information, and to register online .

If you have some time this Sunday, March 7^th, stop by the PIWD event being held at Portland State University and take in some local talent, resources and entertainment. 

Here are some excerpts from their media release via their website :

On Sunday, March 7, from 11am to 4pm, Portland State University’s Smith Center (1825 SW Broadway) “transforms into a colorful medium of woman-centered events and activities. This 35th annual Portland International Women’s Day (PIWD) celebrates the strength, value and diversity of women in Portland and abroad. Over 2000 attendees are anticipated to enjoy educational workshops, art exhibits, musical entertainment, and international cuisine.”

“The mission of Portland International Women’s Day is to provide opportunities for women, and the community at large, to discover similarities and learn from the differences in an environment that is respectful, inclusive, and supportive of the values and points of view of all women.  Since 1975, PIWD has fostered a uniquely inclusive and supportive environment where individuals can create crucial connections and sustainable relationships with female community leaders, educators, health care providers and artists.”

“Entertainers performing at this year’s event include Euphoria Studios, Portland Lesbian Choir, Jamie Stillway, Gypsy Caravan, Under the Radar Dance, and DJ Alligator Heart.  Interactive, open forum workshops featured women-focused environmentally sustainable body care, discussions on storytelling through documentary filmmaking, discussion of the actions of the International Council of the 13 Indigenous Grandmothers, creative communication using improv, and supporting our Central American sisters.” There will also be “many women-owned businesses are listed among the vendors, providing positive visibility and a collective spirit that encourages economic independence.” 

The event is FREE to attend and donations are more than welcomed.  Complimentary childcare is available and Portland State is easy to get to by MAX .

Portland International Women’s Day 2010 is brought to you by the Portland International Women’s Day Planning Committee.  For more information, contact Cassie Clements
coordinator@piwd.org and be sure join us (I’ll be there carrying around my usual apple.)

Hello, dear MLWT readers. I am pleased to be invited to do some guest blogging for you now and then, and it feels like it might be nice to put first things first and introduce myself properly.

To start off, here are some basics:

My name is Sarah Nuxoll. I’m 35 years old, and I live in Portland, OR with my husband and two young children. I do not have lupus, but I do have Cystic Fibrosis .  Yes, I realize these are vastly different diseases, but boy can I empathize with the continual demands and detours of living with chronic illness. 

What brings me here to MLWT, in a nutshell?

Well, I’m here because after 35 years I’m finally practicing letting myself enjoy life as it comes – illness and kids and all – and I’d really like to help others feel this as a possibility in their own lives.

What will I be writing about?

A number of things, I think. When we live with chronic illness, I feel it touches so many aspects of our lives, day in and day out. It’s this big picture I’d like us to be able to come to terms with, by digging a little deeper into habits of emotions and thinking that actually limit our options for enjoying our lives, usually without our even being consciously aware of them.

More specifically, I feel drawn to reach out to new parents, who may be struggling with how to find time for nurturing themselves physically and creatively in between all it takes to raise children. I’d like to contemplate the ways chronic illness touches into and is influenced by our spirituality. I am also interested in exploring a deeper mindful connection with our bodies themselves; though it is easy to feel “betrayed” by our body when we live with chronic conditions, I’d like to consider turning this attitude on its head and see how we might more consciously participate in our inner workings.

How do all these subjects come together?

In essence, what I’m really hoping to do is to help us recognize when we begin to feel frustrated with our lives – whether due to issues with our health or just life in general – and then come back to square one and ask ourselves a few simple questions: Am I taking care of myself? Am I asking for the help I need? Am I getting time to express who I am, apart from any role as patient, parent, or partner? And if not, why not? What beliefs am I carrying around that fuel this frustration, and that really aren’t serving me anymore? What do I want to do with my life, anyway? 

I believe that if we can begin to see more clearly these subconscious patterns, we can turn them around to become the fire we need to consciously tell the story we want with our lives. And that, dear readers, means giving ourselves permission to creatively explore how we can organize our lifestyle to receive what we need and actually enjoy ourselves here.

How did I get interested in all this to begin with?

Up until a few years ago, I spent a lot of time feeling angry, depressed and overwhelmed with my life.  My interest in beginning to sort out these subconscious habits was ignited when I met my meditation teacher, Brenda Morgan .  I still work intensively with the body-mind and spiritual insights she shares for healing the way I approach life. This has brought such a positive restructuring to the way I engage my creativity and explore all aspects of my life, that I am eager to share some of these tools with you as well, flavored by my unique experience as a woman with cystic fibrosis, as a mother, and as somebody who is truly interested in helping each of us accept and embrace ourselves as we are, while having the courage to move toward healing. 

Interested in chatting further? 

If you should find yourself reading one of my blog entries and something clicks that you’d like to explore further with me, I would invite you to surf over to my website, and connect with me there. I am happy to chat via email, by phone, or in person. I also welcome the chance to speak to groups of people interested in opting out of the cycle of stress and frustration in favor of exploring ways our lives can work and be enjoyable. 

Thanks for listening, dear readers. I look forward to this conversation together.

Sarah

This month in the MLWT Shelfari.com group , and continuing through March, we are discussing the book Unexpected Blessings: Stories of Hope and Healing (Penguin Group, 2009) written by Roxanne Black (now Black-Weisheit).  I received her book from her publishing rep last year, had just come across the LFA’s book recommendation list and set it aside until I had the chance to speak with her personally.  This month, we managed to speak on the phone and, I have to say, I was absolutely impressed with her. 

But, I don’t want to get ahead of myself.  Let’s talk about the book, first.  There are three main reasons why I would’ve bought this book, even if they hadn’t sent it to me. 

The first reason is that once you open the book, it invites you in with a sense of gentle honesty that isn’t here to offer you tips, recommendations, discuss medical treatments or divulge all of the unfathomable details of illness that are found in some other lupus books.  In their (other authors’) defense, there is a time and a place that we sometimes have to visit the ugliness to help us find the peace, and I would hate to not see those books available to us.  Roxanne’s book, however, is written with the intention to create a connection with the reader on some of the thoughts and experiences she has had over the years, in order to give reassurance that even the most challenging times are filled with humor, irony, possibility and encouragement.  It isn’t only for those of us with lupus, but covers life with chronic illness as a whole.  In fact, this book offers insights into the roles her caretakers, family and friends have meant to her and I recommend it to anyone who lives and loves someone facing any illness.  Some people she speaks to and of  include Christopher and Dana Reeve, a couple of champions on the perserverance and hope found within the human spirit.

The second reason is related to the first, in that this book is a very light, quick read.  It isn’t meant to be heavy or burdensome to the reader.  Instead, it reads like a moment shared that we often have with those people we trust and delivered in a style similar to those books offering the readers a ‘thought for the day’.   The chapters are glimpses into Roxanne’s thoughts, discussions, experiences and situations that she shares readily and with grace.  I could go to the book, read a chapter within minutes, get what she was pointing out and then continue with my day with a lingering notion of gratitude for being so lucky living with a mild form of lupus, hopeful that I will make some key and inspiring connections, calmed down in knowing that things will work out however they will.  This is a reference book I will keep handy for my heart, for a chance to visit a moment shared.

Lastly, the third reason I would’ve chosen this book is more personal in nature.  It wasn’t until I read the cover and followed the link to Friends’ Health Connection did I realize just how similar MLWT is to what she began years earlier.  Our project focuses on building community and stronger lupus resources here in Oregon and SW Washington, but it shares the same  premise:

that it simply takes finding one person who is going through things similar to what you are, to assure you that you don’t have to go through things alone, if you don’t want to.

 I had never heard of FHC, primarily because I didn’t reach out to others when I faced my own diagnosis.  I was the poster child of relationship-focused coping, where I circled inward and focused on parenting my two young girls, attempting to minimize the impact my lupus had on their lives.  They were an outlet for me to postpone thinking too much about my health, future and fears, offering me instead a feeling of control in something at a time when I felt I had little.  Roxanne began her network in hopes of learning and connecting with others who were going through the same things she was, which I may have done, too,  if I were a teen when my lupus arrived.  Since the late eighties, she has built an amazing ahead-of-its-time resource whose framework has been duplicated by many of the networks we now see online today.  The added feature that FHC offers, that I think is key in what makes her network truly exceptional, is how it honors the individuality of each person’s experience and connects them with someone who shares similar experiences to make a very strong resource connection.  Our PORT program does the same thing, but her network is worldwide in offering perhaps a little more personal space and many more potential points of connection.

You can read more about what others have written about Roxanne and her book, not to mention an excerpt here .  When I spoke with her on the phone, I wanted to branch out a little from what has already been written and narrow the focus onto lupus itself and the future plans she has for FHC.  I will cover that in the next post.

Check out her book through the Powell’s link here on the website or her website.  You can also catch up on the discussion (which gets more lurking than participation this round, but that’s fine) through our Shelfari Book Group link  on the sidebar as you read this post.  She has agreed to participate and answer any questions you have about her, her book or the Friends’ Health Connection, so take advantage of her generosity!

She is a wonderful person, not only in the stories she shares in her book, but also in the genuine hope that she has for anyone facing life with illness.  I strongly encourage you to get to know more about her~

I recently came across an article on Chinese Medicine discussing how our faces can offer us insights into our overall wellness.  I admit to being skeptical about reading it, mainly because it was an online update when I logged on to the computer this morning and not within a medical journal. When I hit the part about the chin/water connection, though, I found myself a little more intrigued.

Chinese medicine has been practicing the use of “reading” our body’s language on the outside in communicating to us what is going on in our insides.  For over 5,000 years, this traditional practice has been in use utilizing a Five-Element network consisted of Fire, Earth, Water, Metal and Wood.  These elements correspond to internal organ groupings that assist in a better understanding of symptoms we experience.  In this article, the Five Elements are also used in helping us think about what our facial skin is telling us by not only its condition, but the location of the symptoms. 

This article caught my attention because, if I look closely, the skin on my chin is somewhat leathery and due to (what I assume) is sun damage.  It isn’t very pliable, but if I keep it lathered with sunscreen, buff it and moisturize, it can pass for fine. While reading this article and following his discussion about the Water element,  I remembered a number of issues over the years with my chin.  I have Stage Four Kidney Disease and am in a constant state of dehydration, as I mentioned here recently .  I tend to manage my lupus-related stuff through a cooperative relationship with my body and try to connect cues on some important symptoms.  Hmmm, leathery (dried out) skin on my chin….damaged kidneys.  Okay, he had me hooked. 

I didn’t get diagnosed with my lupus until my kidneys failed (a rough way to learn, but often it’s surprisingly necessary in order to garner an official lupus diagnosis.)  Prior to that failure, I had lots of redness and groups of ‘bumps’ that weren’t acne but, instead, ‘water’-filled all over my chin.  As a teen, I usually broke out only on my chin and rarely anywhere else. Over time, my chin always indicated some weird colors, shapes, dents, and so forth consistently keeping me calling in to have it checked out, only for the symptoms to disappear before my appointments. 

However, before I jump in with a lot of uninformed ranting and proclamations, I think it would be best to bring in someone who may have a more professional take on both this article and how Chinese Medicine is actually used. 

Here is Becca’s response to the article and be sure to check back often, as she will be contributing more information and opportunities to explore integrating resources into our health management.

Take it away, Becca ~

 “Facial diagnosis is one of the many great tools that Chinese medicine practitioners use to gather information about the health of a patient without the aid of modern diagnostics.  I’m really glad that Maria found this article and brought it here to share with you all!  

The ancient Chinese made many observations about themselves and the environment and saw us as intimately entwined with our environment.  Both our inner influences (what the Chinese called our constitution, and what modern medicine calls our personality and our genetics) and outer influences (the weather and our environment) play their parts in our health and well-being, all of which is reflected in our bodies and can be seen on our faces, in our pulses, our tongues and even in our eyes! (The ancient Chinese got creative with their systems of diagnostics!) 

I would like to caution, however, that an imbalance that shows on your face may not always be a sign of, biomedically speaking, serious disease.  What it does mean is that you likely have an energetic imbalance that should be corrected in order to prevent serious disease, and to promote health and well-being!  Aren’t we lucky to have such a sensitive diagnostic tool in our own bodies?  As in the story of the girl with asthma that Dr. Maoshing Ni mentioned in his article, we all have the ability to act preventively because we are given signs of disease prior to its expression, we must simply know where and how carefully to look. 

In our society, we have been trained to only go to the doctor once disease is in full swing and we can’t stand the symptoms any longer.  How much could be prevented if we were taught to listen more closely to our bodies?  Or for those of use who have always listened closely, how many of us could have avoided the conversation of “it’s all in your head” only to be vindicated years later when symptoms have finally become “clinically relevant?” 

If you’ve read the facial diagnosis article and think you may be seeing an imbalance reflected in your face, consider seeing an acupuncturist and Chinese herbalist who can help you regain your health, or prevent future unhealth! 

If you’re interested in reading more about the five elements of Chinese medicine, and how they affect our health, I’ve written a blog post about each one and some to keep them in balance. 

Enjoy! “

Fire

Earth

Metal

Water

Wood

Hi All! 

I’m Becca Seitz, licensed acupuncturist and owner of Thrive Acupuncture in NE Portland.  You can read about what got me into acupuncture and Chinese medicine at the link Maria gave above.  But here, today, I think I’d like to talk about my philosophy for my practice (and my life!)  When I graduated from acupuncture school, I started my business under the name To The Point Acupuncture.  Get it?  Acupuncture points, getting right to the point of a health concern, not dancing around it.  Catchy, huh?  I love puns and really love businesses that have enough of a sense of humor about themselves to include them in their name.  I certainly like to be the first to laugh at (with?) myself.  This name was PERFECT for me!

But you may notice that I have a different business name now – what drove me to change it?  While “To The Point” was catchy and fun, it didn’t get across what I wanted out of my practice.  I found myself attracting patients who wanted me to “fix them.”  And while this may be how biomedicine works with its surgeries, medications and other miscellaneous therapies, this isn’t how Chinese medicine works.  I like to see Chinese medicine as a way to remind your body how to function healthfully.  I am merely the tutor or mentor for your body.

So I would go along day after day helping people fix their health problems, but as soon as their symptoms disappeared, so would they.  They would only return once their symptoms returned.  And this is completely understandable.  Our model of healthcare in our society is based on an emergency system – if something’s broken, you fix it and go on with your life.

In Chinese medicine, the model is to prevent things from breaking in the first place.  And, if something does happen to break, you fix it and make sure it never breaks again.

 I wanted to inspire in people the desire to be more than just symptom-free (pretty catchy slogan there, huh?)!  I no longer felt like my business name was getting the point I wanted to get across to my patients.  So, I changed it.  It was a little scary since my old name was just starting to get out there and known, but I felt strongly enough about my purpose, that it was a must.  

I became Thrive Acupuncture, and I must say, I love it!  I love helping people become the healthiest they can be, and you know what? I’ve got many patients now who have made the choice to continue treatment with me, even though their symptoms are gone, to make sure that they feel their best!  There are still those who just want the band-aid, and I treat them, and I love working with them, and I love seeing them feel good, but my true passion is in helping people to THRIVE!

I can’t wait to blog with you all about Chinese medicine and how it works!  If you have any specific questions about chronic disease, auto-immune disorders (or anything else!) and Chinese medicine on here, please ask away and we’ll get those answered!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This Friday, we will be posting a follow –up Chinese Medicine post regarding the Five Elements and some discussion on a recent article about applying those elements.

Realistically speaking, the days of being able to keep lupus and my Self separate are long gone.  Although there are days when I feel like there is no reason to see myself as ill, I know that not recognizing that fact will lead me to gloss over a part of who I am that I have grown to respect— more than I ever thought I would. 

There are many reasons for us to not see our health challenges on a daily basis.  We may see risking relationships with others, by informing them of our current state of affairs, not being worth bringing up the issue at all.  Loss of job, loss of companionship, loss of friendship, loss of innocence, loss of ourselves and questioning our roles that we use to place ourselves in this society.  Where does disclosing that part of our lives really get us? 

The “Loss of Self” ~ how many times have we heard that phrase in books authored by patients and professionals alike?  A distorted or unfamiliar view of who we are, where our places are and the unknown of what life means anymore, now that we see our health slip away?   

Wait a minute?  When did we ever have the answers to those questions?  Or, more accurately, when did the challenges within ourselves and with others become a static condition when we were healthy? 

Perhaps that is why some of us resist in making our illness an issue.  Maybe, to some degree, we recognize that the things we learn from living with an illness is stuff we should be learning anyway.  Gratitude for the simple pleasures in life to experience and share.  Friendship and learning how to accept help, support and encouragement from others.  Knowing when to say “when” and when to keep a little care for ourselves.  Learning how to communicate effectively and advocate for ourselves, because what we need does matter.  I’m recognizing that life is never going to be predictable and that developing a sense of inner strength will give me a stronger footing when some of the tough questions come up. 

Before you anticipate that I am about to say how grateful I am for developing lupus, don’t.  No one asks for illness and no matter how much good can come out of it, being ill is still a real drag and burden.  I feel for those who are so young and have to face their health challenges so early on.  They need to constantly evaluate each breath they take without the gift of time or memory of enjoying their youth.  I know that there are so many other people who experience the painful and brutal ravages of this disease, who are unable to gloss over their challenges, as I am able.  Those people who I know to be living with unfathomable health challenges are amazingly inspirational, funny, clever and determined people.  They are also pretty pissed off about having to deal with their health on top of everything else this life throws at them.  I imagine Bette Davis would have referred to illness in the same way she did about getting older:  “…ain’t for sissies.”  Do we really acknowledge just how much strength it takes for these people to “look fine?”  I don’t think we do, but we need to start. 

Just as this world has to come to the realization that living without illness is becoming a rarity and a majority of people have chronic conditions (since little is actually cured anymore – where’s the profit in that?), so do I.  That means that those of us who are living with chronic illness need to, also, recognize just how much of a majority we are and that there is little we should have to hide.  I let go of the notion that my talking about illness makes people uncomfortable, simply because it has become a vital component to who I am and want to be.  I hate having to take meds, but am so grateful that the ones I can get my hands on give me another day of opportunity.  I hate not being able to work full time in a job somewhere, but I get to explore avenues and new career possibilities—albeit from a financially-uncertain standpoint— that sometimes show myself just how surprisingly skilled and innovative I can be.  

I’m beginning to see how complaining about my limitations and feeling embarrassed about my heath is a form of self-hate that really has no place in my life. “TMI” is probably the toughest part about knowing me and is really more about me forgetting to ‘filter’ rather than having an agenda to seek sympathy. What that openness does for me, however, is offer me chances to keep the connection between myself and my health strong.  If that stays strong, then my contributions to family, friends and my community will, too.  The most challenging part about having lupus, for me, is getting caught up with those who question its validity as a ‘real’ disease.  I do realize  that those naysayers will eventually experience their own mortal decline, in one way or another.  Until then, I know what’s real for me and I have to take care of my needs the best I can by keeping things honest. 

Living with lupus does define me, but it doesn’t own me.  My relationship with lupus is what grounds me into truly knowing who I am, what I’m capable of, what I want and need from others.  I would be, should be, asking myself the very questions about my place and purpose here, even if I didn’t have this illness.  If I had good health, there would still be plenty of complaining, things to get frustrated and angry over, and experiences in feeling unheard or misunderstood from time to time.  Living with an illness is a human condition that joins us all in the experience and there is really no reason to hide any of it. Who is immune to declining health, anyway?  Mine has just been “auto”-mated for me and continues its processes with little regard to the damage it is doing to me.  Until those bugs are worked out, it still remains a pretty important component to my overall system that requires patience, information, technical support and the willingness to work with the many, very real, glitches. 

Am I thrilled to have lupus? Nope.  Am I ashamed and angry that I have it? Nope.  Would I be thinking about this kind of “Who am I and where am I going?” stuff without it?  Yeah, I better “be”.

Case in point, symptoms that present themselves when one is at a mild or moderate level of dehydration sound quite similar to my baseline lupus symptoms. What is frightening for me, personally, is how I am also seeing some of the severe symptoms  from time to time as well, telling me that this has gone beyond being a bad habit and has evolved into self-abuse.

Dehydration isn’t only a problem for infants and seniors, but is also a problem for those who live with chronic illness.  Medications, depression, lack of exercise, and caring for everyone else around us first can lead us into dehydration before we realize it.

I have been dealing with my usual February crud, that generally lasts on average the entire month.  I have no clue why it is every February and, since the month showed up before I could realize it, I’ve ruled out any self-fulfilling prophecy in action.  It starts out slowly then begins its movement from head to chest/cough to gut, back to chest/cough, head, and so on.  When I’m plugged up, I plead for drainage.  When I’m suffering from drainage-overload I wish for a good drying up to give me a break from the Kleenex™, sore throat and a constant hack.  It is during this ‘30-days in Hades’ sentence that I am reminded of my fluid intake habits, as I drink more fluids during this month than I do the rest of the year in total.  Even though I can easily point to my lupus as the reason why I feel the way I do these days, it isn’t my lupus at all. I’m beginning to pick up on a theme.  I’m not saying that my lupus is a fabrication, but that my behaviors really do influence my health both positively and negatively. 

This is a topic I’ve addressed here before. It applies to my new year of pursuing better general health habits, though. By addressing my dehydration and putting it higher on the priorities list than in previous years, I may actually make more headway in my lupus management specifically and my quality of life, in general.  As I think about my crud this month and notice my decreased kidney output, fatigue, foggy-headedness, poor skin quality, dry and burning eyes, muscle weakness, and headaches, I have to admit to that I have brought it all on myself with no interference from my immune system.  In fact, I suspect my immune system has turned the tables on me and is cursing me for making life so challenging.  I don’t blame it at all.

Although I know that this crud has to run its course, I have chosen some new ways in keeping my fluids up during and after this annual occurrence.  These may not be new to those of you out there, but writing them here will help me stay honest.  If you have any other suggestions, I’m open to hearing about them.

Starting this month, I will…

• …explore new teas and decrease my coffee intake.  Since I get so cold during the damp, winter months, I drink a lot of warm stuff.  Now that the sun/spring is on the way, I’m going to experiment with some homemade sun teas.
• …keep some type of soup in the refrigerator all the time for a quick breakfast, lunch, and snack. 
• …keep my desk cleared so that I can easily see if I have something to drink while I work.
• …try to keep from being slack-jawed while I think.  I have recently discovered how much I have my mouth open when I am working on something.  Could be why I picked up a cold at the height of flu season…duh.
• …not use my sense of thirst to determine whether I need something to drink.  I will use the empty glass on my desk or the clock.
• …when I go for ice cream, I’ll reach for applesauce instead.

and, finally,

• …will not keep track of how much I’m drinking, but evaluate how I feel every morning when I sit down to review my schedule for the day.  Tracking my intake amounts only puts additional emotional pressure on me to ‘perform’ and I am just stubborn enough to challenge it (as I have in the past).  By tracking how I feel and making sure I do these other previously-mentioned items, I am convinced that I will see some results.

What are some of the things that you do or have done that have worked to keep you ‘flowing’?

Arthritis Discoveries ~ Free Public Education Seminar

Tuesday, February 16, 2010
6:30 PM – 8:00 PM

Location: Bob Chisholm Community Center
1225 Avenue A
Seaside, OR 97138

This seminar will provide you with valuable information on arthritis. Common signs, symptoms and scientific basis of new treatments for arthritis will be discussed.

Guest Speaker ~ James Smith, M.D., Northwest Rheumatology Associates, P.C.

6:30-6:45pm ~ Registration & Dessert Buffet

6:45-8:00pm ~ Presentation & Questions and Answers

 Reservations are appreciated.  Please contact Janet Lamb to RSVP at jlamb@arthritis.org, 503-245-5695 or 888-845-5695.

The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.

What Would Jillian [Michaels] Do if she had lupus? 

This guru of the moment, I have to admit, both frightens and intrigues me.  I will occasionally get sucked into an episode of The Biggest Loser on NBC, watching people get yelled at, encouraged, hugged, embarrassed, sweat profusely, swear, give up and persevere.  I, then, either change the channel thinking how much I admire them or I go find something else to do, so that I can avoid thinking about my own physical state of affairs…or both.

Jillian’s history with health and wellness stems from being overweight and angry.  For her, being overweight and needing an outlet to find some personal power was the lit match to ignite her towards the place she is today.  How different would it have been for her if her challenge was an illness like lupus, where, more often than not, symptoms are invisible, immeasurable and misunderstood?  Would she have been as successful in achieving what she has if it was something she couldn’t see? 

I think about that, as I sit here trying to get myself motivated to hit the gym.  For one thing, consciously exercising is foreign to me.  Being active, however, used to be very natural.  As I try to pinpoint the primary reasons why I resist being more active, I try to imagine myself as Jillian living with lupus.  Here’s a gal who could probably bully gravity from happening and that is about what I need in order to take my current health more seriously.  Would the same attitude and motivation have worked if she had to take into consideration the same things I do with lupus?  

• Out-of-the-blue fatigue that closely resembles being under the influence of anesthesia?
• Traveling pain and limited range of movement in varying daily degrees, locations or durations?
• Sensitivities to sun, florescent and, now, energy-efficient lighting?
• Understanding that her body is attacking itself and reacts to stress quite easily—even if it is simply due to dehydration?
• Depending on the degree of the lupus, the medications required sometimes cause muscle spasms, bruising and internal bleeding, bone loss, reduction in strength, and nausea? 

Aside from the physical stuff, how would her emotions have influenced her motivation?

• Not always seeing the physical challenges, but having them emotionally hang over her head day-in and day-out?
• Knowing that no matter what she did, how often she did it or when she did it, she would still not hit the end where control was hers to enjoy? 
• People telling her she looked fine, not understanding that it was taking every ounce of energy she had not to fall over?
• Feeling the pressures of trying to be as normal as possible on the inside as she appeared to be on the outside?

One might suspect that these considerations regarding her health would have made things very different for her and they would be reflected in the techniques she uses today in motivating others. Her measurable objectives and gains would need to shift away from actual weight or physical changes and focus more closely on the relationship between the person and their immune system.

• Wouldn’t she have to be more clever in motivating others than relying on the verbal bullying?
• Would she get as confrontational with people for not being able to move their arms without pain or not have the energy to push themselves physically?
• Would she worry that, by forcing their bodies to work harder, she would potentially risk  increasing their already accelerated immunological chaos?
• Would she view their excuses about being tired, in pain or their tears differently? 
• Would she be willing to accept less control in their own lives by recognizing that no matter what they do, they will still be ill? 

Would she still be the Jillian she is today?

My answer about her still being Jillian would be yes—she would still be the tough, unrelenting person that she is  and for one very important reason.  What motivated Jillian towards action was to do exactly what I need to do living with lupus:

Bring my invisible challenges outward and have the courage to face them.

For me, my lupus is under control and I would appear to not have anything wrong with my health.  That is the same with my weight and clothing sizes.  As I (and those around me) focus on what I see, it is the unseen or invisible red flags that pose the greatest harm to my well being.  My choice to avoid making my lupus visible daily gives it more control over my life than I ever get by ignoring it.  As Jillian made visible her personal struggles to overcome her lack of self-determination, so should I.  To put off something that frightens me more than I let on only fuels the lupus rather than control it.

Is minimizing the impact my lupus has in my life any different than a person who continues to carry around excessive weight?  No, it isn’t, because just as that extra weight weighs down a person from actively living, so, too, does the weight of carrying around the idea that if we don’t see our lack of health then it must not be that bad.  We humans, unfortunately, adapt very well to things we sometimes shouldn’t.

Transparency is something Jillian excels at and is what I probably fear the most.  The thing is, though, Jillian is already in my head.  I hear myself spewing the same insults, challenges, shame, excuses and frustration inwardly that we see on every episode of that show.  I become her and her verbal target all in one convenient package.  It is almost as if Jillian represents the once-healthy part of my Self and The Loser is the now ‘unhealthy’ part of my being, battling it out between each other all in the name of best intentions.  The Loser in me is winning these days and the Jillian part of me is pissed.  We all know what happens when she isn’t happy?

Three years ago, my total cholesterol was 270.  By body mass index (BMI) was 25.  My blood pressure was 110/70.  My weight was 118 lbs.  My age then was 44.  I carry all my weight in my core. I am a walking, talking heart attack with a side of diabetes to boot. 

My blood work also showed nearly normal levels in everything, even with my lupus and kidney disease, meaning I have less to worry about with them right now.  So, you can see why I would assume that NOT doing anything other than taking pills was working for me.  The reality, however, is that we rarely die from the diseases themselves – no matter what they are.  It is usually the “complications” that get us in the end, and heart failure would be it for me.  This 2009 research study conducted in Sweden gives another glimpse into why heart disease is a very real possibility for me.  Although I don’t have all the indicators and there are some limitations in the study, I keep this stuff around to remind me that lupus + kidney disease + sitting for long computer hours=big parts of the coronary picture.  I am hoping, though, that I am catching things early enough before I pick up all the other indicators mentioned. 

As someone who seems to do better on a team rather than alone, accepting the Jillian in me helps me gain some footing in my plans for better health this year.  Although the thought of having more shouting matches going on in my head doesn’t thrill me, treating myself gently isn’t getting me anywhere either.  As much as I want to believe Jillian would act differently if she had lupus, I know that the transparency she insists on from her team members is vital for me in getting things accomplished, too.

Bring it, Jillian.  I’m ready.