We’ve been asked by the National Lupus Foundation and our own Pacific Northwest LFA Chapter to post  reminders about this annual awareness event.  Both offer important and convenient ways to help get your voice out there to policy makers, researchers and organizations instrumental in making our lives with lupus more empowered.

From the National LFA Office:

“Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home!

 
As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16.  Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
 
Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator
Raise awareness by sending an ecard
Spread the word on Facebook and Twitter, or through your blog

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page. 
 
Remember, we really need you to make your voices heard on Tuesday the 16th.”

From our PNW Chapter:

“Another way to advocate:

Download “Lucy” on iTunes by March 15, 2010 to donate to lupus research

One hundred percent of the proceeds from each download of the Julian Lennon and James Scott Cook song “Lucy” on iTunes will be donated to lupus research thru March 15, 2010. The funds donated from the single are restricted to support the LFA’s National Research Program, Bringing Down the Barriers. Time is running out on the promotion, but it’s not to too late to spread the word, and encourage constituents to download the song.

You can promote “Lucy” in a variety of ways including outreach to local radio stations encouraging them to play “Lucy”, emails to your constituents, on your website, and through social media… We [are] also thrilled to share with you that Julian Lennon and the story of “Lucy” will be the cover story for the next issue of LupusNow, which should be completed by Mid-March.”

To download the song on itunes, go here

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Advocating for lupus isn’t limited to those of us who struggle with more severe forms of this illness.  It is puttting  your voice into the national conversation as someone who lives with lupus no matter what degree of progression. For someone you know who has this illness, who you can find if you simply ask anyone in your social circle.  The sheer nature of autoimmune disease is the inability to predict what your illness will be like tomorrow, whether your daughter may develop it through genetics, whether your friend will lose their job because of the health challenges they struggle with to remain on the job or the fact that one more person has to file for disability that you, the tax payer, will now have to support.

The healthier and sustainable we can remain while living with this illness, the better off our entire communities will become.  Take your part in creating a healthier community for all of us~

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UPDATE 3/16TH from LFA National Office:

Make Your Voice Heard Through March 19th!

Simply go online to the LFA’s advocacy action center and you’ll see a section called “Action Alert.” Click on the link called “Take Action.” Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you’ve completed your message, click “send message” at the bottom, and that’s it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important!

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

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”.

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.

We live next to a water way and have more varieties of fowl than you would expect to be here in the suburbs.  With the mild temps this winter and heading into spring, the size of our backyard flocks have increased substantially.  So, too, has our cracked corn budget.  Although we truly enjoy having them all here—mallards to heron—there is a particular behavior they exhibit that really gets my own feathers ruffled.  They peck at each other mercilessly. 

I’ve been impressed with the increased number of dialogues surrounding healthcare, lupus, advocacy, events, and so forth found all over the internet.  There are more sites to choose from, improved quality of information and opportunities galore to show both your commitment to increasing awareness and to learn more about this illness.  There is something out there for everyone including patients, families, friends, neighbors, employers, policy makers, service and, yes, even medical providers.  The ways in making lupus relevant in your life these days are as numerous as the lupus symptoms themselves.  However, just as it is with our ducks, I’m noticing a familiar trend within lupus advocacy that I struggled with during my years in social service. 

The territory and pecking order among lupus organizations and individual advocates are beginning to resemble the flock of ducks I’m feeding.  For the ducks, it appears that it really isn’t an issue of whether it is a feeding opportunity to collect together and enjoy the bounty.  Even though there is plenty of corn in front of them, they will go out of their way to identify a duck that isn’t doing well, isn’t familiar, isn’t caring for a clutch (with ducklings) or is standing too close to their pile of corn in front of them.  It would seem that they question who came first, who is bigger, whose color is better, who has a mate and who doesn’t.  I’m no bird expert and I understand that survival of the species comes into play here.  I also recognize the fact that their brains have limited reasoning capability.  I still can’t help myself, though, in getting after those ducks that I perceive to be bullies and refusing them food because of their behavior. 

I view lupus advocacy and awareness efforts as a team sport—one which does require sportsmanship in order to make the game an enjoyable experience for all who take part.  Yet, we have organizations and individuals out there who seem to feel that the lupus territory isn’t big enough for all to make a contribution in their own way, leading to exclusion, bickering, competition and chaos. 

You know the saying, if it walks, quacks and looks like a duck, then it’s a duck?  Fortunately, we have determined what a duck is through scientific study.  With lupus, we seem to be quacking over who is doing better at offering support rather than agreeing that it will take a flock to make a dent in the work to be done. 

Lupus isn’t really about agreeing, though, is it?  We don’t agree on what the initial symptoms should be, what medication works, what level of support we will experience, which doctor will work with us, or which management approach will succeed in gaining remission.  We don’t agree on which logo is right, which month is Lupus Awareness Month, which event is more important, whose perspective is “healthier” or which foundation is deserving of our hard earned dollar. 

While in the grocery store checkout line a week ago, I was speaking with a gal about lupus events here locally and the man standing behind us felt compelled to chime in with the comment “Oh great, another group of sick people begging for my money!  Why is it that there are so many of you [groups] asking for money when there is only one disease?”

That comment was not entirely out of line and reminded me of the scolding I give the ducks.  There is enough space and all will get fed to some degree either today or another day.  There is no need to compete or bully, but there is a need for everyone to play nice so that the whole experience is a good one for all involved.  For those addressing lupus, cooperate and appreciate the variety that is being brought to the experience:  the mothers, the ones who are more ill, the newbies, the veterans, the out-of-towners, the “bird of a feather” who’ve come to “flock together.”

Seriously, we do have the brain capacity to reason and lupus awareness, support and advocacy is a huge territory to cover.  If everyone would take a good look at their mission statements and consider for a moment why they advocate in the first place, I doubt anyone will find “…to peck the living daylights out of the group next to me while I feed.”

If your purpose as an individual or as a foundation is strictly to bloat your ego like a duck who has gulped down too much corn, then no wonder there are people standing in grocery lines watching the display and withholding their gifts.

With all the uncertainty regarding lupus, there is a tremendous amount of room to bring in ideas, thoughts and services to help strengthen resource options.  If you offer one form of service and another group offers a different resource, see it as an opportunity to collaborate rather than a reason to squabble.  Every lupus patient, every lupus experience, requires flexibility and creativity.  That means cookie cutter approaches to awareness campaigns are limiting and useless to those who fall through the cracks.  Is “…offer support gaps” listed in your mission statement, too?  What happened to honoring those unique individuals who you are claiming to serve? 

What do you readers out there think?  My research and conversations show that there are few of you who are interested in becoming members of lupus organizations.  For whatever reasons you may have, I’m sure they are good ones.  Budget constraints?  Lack of interest? Prefer anonymity?  Frustration in lack of service?

How do you view lupus awareness efforts here in Oregon and nationwide?  What thoughts come to mind when your hear someone asking you to donate for their event or organization? 

Your feedback is important and may help get our available resources into more reasonable order.  Let them know!

“Hello,

We received an email from our National office about The Dr. Oz Show featuring men and lupus. It will be airing on Monday, Jan 18, 2010. In Seattle you can watch this show on KOMO4 TV at 3:00pm. In Portland, it is aired on ABC 2 KATU 3:00 PM and 8:00 PM on KATU-DT2 (DTV Channel 2-2) [Dr. Oz link has incorrect time]. 

Please check this link: http://www.doctoroz.com/find-station to watch show timings in your areas.”

After watching the show you have more questions or want to know about resources to learn more about living with lupus, the national LFA website does offer archived transcripts from their webchats on Men and lupus,  Men’s health and lupus and Lupus in men.  They also have community message boards where ongoing discussions and an Ask The Expert link.   Our PNW LFA Chapter will also field your calls and emails to receive further information or materials.  If you have more specific questions about living with lupus  in Oregon, contact us here and I will connect you with local resources to fit your situation.

Of course, there are many other amazing lupus organizations on the internet (for example, research and advocacy and education,community-building and diversity)  and several bloggers who also offer their suggestions and stories.  As always, recognize that nothing can take the place of your physician and we strongly recommend that you take all information you read carefully.

Researching and reading is important in helping us cope with our illnesses, but always speak with your medical professional before implementing anything you come across.  Best intentions can still do a great deal of harm.

We don’t often think about men living with an illness and it is important that we learn from their experiences, as well.  Whether you’re a fan of Dr. Oz or not, I’m just glad he’s putting the discussion out there, giving us more opportunities to begin asking the question:

What is lupus?  (Sorry for the ads, but the video is a quick and informative source to get the gist)

It seemed like a good idea at the time.

I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in.

As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family room.  There is no way to walk by the thing without looking at the embarrassing lack of progress and returning to that hunched position with a dire need to redeem myself by finding “just one more piece.”  After about an hour of work and 15 minutes of trying to stand up straight, it occurred to me that this death wish of a ‘gift’ feels uncomfortably familiar.

The new year is upon us and, although I resist at the start, I usually end up with at least a few ‘resolutions’ or goals that I put out into the Universe hoping I make my way to them within the next 365 or less days.  “Hoping” is the operative word there.  Every year, I tend to look at the entire year all at once, in all of its possibilities.  And, every year, I find myself overwhelmed with all of the work involved.  Unlike the puzzle, I shudder recognizing all the pieces of my life floating around looking for a place to belong.  I lose steam quickly and create some pretty amazing excuses, distractions and impressive cases of sudden amnesia—all in an effort to completely avoid getting anywhere in my big picture.

The thing is, my life is consumed by these unmet goals or resolutions just like that table is fully present in my family room. I can’t get through a day without noticing how little progress I’m getting to something that really could be beautiful, too.

Now, this doesn’t mean that I don’t accomplish things, because I certainly do.  What I’m not happy with is that they aren’t the ones my heart is aiming for and are often downsized for various reasons.  For the last two years, I’ve come up with some general goals allowing myself to ease up on some of the pressure in completing them.  That hasn’t been working out.  I’ve noticed lately several people talking about choosing only one word to focus on for your year, giving yourself something to look for in every day whether it be peace, joy, laughter, gratitude, and so forth.  The only work would be to find something in every day that reflects the word you choose.

I don’t trust myself in doing that.  I have been generally stating goals such as “better health” or “get in shape” thinking that they cover the bases. In reality, they leave me off the hook and unmotivated.

Perhaps I just need to focus on a visual reminder to get me through this year.  Puzzle.                                                                 (image: Buffalo Games)

This year, I chose only five goals that I want to see myself accomplish and complete.  I am viewing each goal as if it were a part of a big puzzle.  With Neuschwanstein, I am breaking the whole thing down by working on the sections of the picture: castle, lake, and branches.  With my goals, I’m using the same process and one that is recommended whenever we put together our action plans to address personal goals.  By having objectives that are specific and measurable, I’ll have direction, more focus and know when I’ve completed the tasks.  That will eventually make up the goal, because each image will become clear with every piece I place.  One of my five goals is still about improving my health, but I think I’ve come up with a more targeted action plan and already see positive progress.  Eureka!

One objective I’m using to measure my progress this year to “Build More Health Opportunities” (both for this project and myself) is choosing resources that get me to be more physically active and outdoors.  My current gym membership—you know, the one I made a big deal about starting last year?—expires in March and I’m not going to admit to you how many times I actually ended up going.  Let’s just say they were pretty darned expensive workouts.  The good news is that I do better with actual deadlines imposed on me by others AND I’ve found a way to integrate the gym experience more into my daily life.  That’s a whole ‘nother post, though.

This past week, I went to my first PDX Meetup.com group called Portland Women’s Outdoor Club .  The registration for this group grew so quickly and, I suspect, will continue to do so, as many of us celebrate in the realization that we can find others at similar physical and skill levels to motivate us to get out there.  There is a great mix of skill levels, interests and ages among the women who attended the first meeting.  I was happy to hear that the activities that I want to take part in more often and learn for the first time were shared by the majority of gals there.  Beginning mountain climbing/repelling, hiking, backpacking, and snowshoeing (although I really need to work on my stamina for that one!).  It was easy to find someone who had a lot of experience in this group in these particular activities who could lead the rest of us newbies.  There are also some pretty creative gals in coming up with some other options when the Oregon winter just isn’t something we feel like experiencing.  I haven’t gone to one of the activities yet, but my curiosity is peaked about this Wednesday’s gathering to learn how to make a coke can alcohol stove (for those ultralight backpackers  in all of us.)

 I will go ahead and cross this objective off, because I’ve signed up with an opportunity and met some of these gals—my biggest hurdles.  I am really excited and encourage any of you locally to check this group out.  The more people, the more options, more opportunities and all the more likely I will take part.

I hope to see you, too!

Peace~

Keep it in your heart always.

I spent a great deal of time in 2009 putting together the new blog set up and managing the social networks to find people out there and learn from them as much as possible. All that time behind the desk, however, took time away from trying to build this project into that strong support network hub for those living right here in the Pacific Northwest.  Of course, the goal for this project isn’t to imply expertise regarding lupus or other lupus-related illnesses and conditions,  as much as it is to offer a connection point for those of us looking for a variety of local resources when they want them.  Those resources need to be created and it takes hitting the pavement as well as the computer keys.  So, I stepped up the face-to-face work that I’ve not made enough time for this year.

Since this is the holiday season, getting those cards sent and stopping by to catch up with some colleagues was not only fun, but energizing.  I’m looking forward to the New Year with plenty of enthusiasm.  New one-to-one services, our Target Practice crew get-togethers, community forums and professional collaborations with health representatives will be topping our news for 2010.  I will be stopping by the blog more regularly with topics in the areas of interest that we hear from you about most often.  I will be putting myself out there for my New Year’s goal of regaining some lost footing in my health.  We will be starting up the book chats again in January and we are still taking last minute suggestions!  A lot to look forward to begin focusing in on our mission with this project~

“…to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.” 

Now that the website is on board (and still evolving with new details) and we have flyers out in the community, it’s time to get back to focusing on those strong resources, in reflecting the potential and well-being of those living here in the Pacific Northwest.  Back to targeting the living and learning areas in our lives that happen to include lupus in varying degrees.  It isn’t only about having lupus — it’s about living with it well and on our own terms.

I want to personally wish everyone an amazing holiday season and a year of limitless possibilities in health, opportunity and enjoyment. 

We will be checking in with you very soon~

This week is National Handwashing Week .

I fall somewhere between “Extra precautions are a good idea” and “What’s all the hysteria really about?! ” when it comes to exposing my already-accelerated immune system to all that’s out there these days.  This middle ground applies to many things in my life, however, and not just health management, respecting the personal welfare of those around me or how to deal with the falling sky.

I’m taking this hand washing week more figuratively, rather than in the intended common-sense approach.  Granted, as basic as it sounds and as silly as it may seem to have to celebrate a week of reminding us about something we’ve heard since we can remember, there are many people who don’t fully realize how important it is to do it.  So, here’s my shout out –reflect on the many things you touch during your day  and consider managing how much nasty stuff you pick up and spread to yourself  (and others.) 

This need to reflect on the picking up and spreading of unwanted ‘residue’ has me thinking about issues, challenges, inconveniences and misunderstandings that I know I’m harboring within my self and it is affecting my overall health.  First off, there is a pending doom lurking to strike in January, when all the yakking about New Year’s Resolutions begin.  There is the usual laughable budget to work with this year ~ the worst so far.  There is the holiday avoidance dance…sidestepping the real issue, problem or hurt that is politely kept silent, yet remains deadly to the relationships it infects for yet another year.  There is the reflection on the past year and reviewing of the “to do” or “wish” lists that were written last January.  Or, the revised business plans that suggest promise and opportunity…that are still getting the kinks worked out, due to a rougher road than originally anticipated.  Then, there is the realization, at least for me, that my oldest turns 18 years old in January, is finalizing her plans for college and is still five years old in my mind, no matter how much she proves to me otherwise. 

As I head into what December represents for me this year, I can’t help but just want to wash my hands of all of it.  I feel like I have dug myself into a hole so deep and full of foam squares that, with even the slightest movement I make to get out, sends me right back in with a few more projects added to my list of things to dread.  I can’t seem to quiet my mind in coming up with more ideas long enough to see some progress on the many others half-baked.  I see the promise and opportunity of where I want to be, but it’s the road and energy required of me in getting there that gets lost in an immobilizing fog.  

This year, it will be primarily a homemade gift-giving season and I’ m excited about it, despite all the time and energy it will be taking from me tackling my ugly to-do list.  However, just as this week’s message about hand washing accentuates “empowering individuals to educate and help protect”, I recognize that I am going to have to do a little of the empowering with myself in order to make this an emotionally and professionally healthier season, because that is really what I want most for Christmas.

I’m offering up a list of things that I am going to do to wash my hands of unwanted debris in order to accomplish as many of those goals I set for 2009 as I can, before 2010 arrives.  I will follow these guidelines in order to cleanse the potentially toxic or virally- threatening obstacles that seem to be in my way of making it to January 1^st, 2010 in a much better place than I am today.

This December, …

I will cleanse the need for perfection.

I will blow any unhelpful or demeaning internal comments about myself into a tissue and toss it away, followed by a cleansing “Gesundheit!”

I will recognize how many things, people and efforts I touch upon throughout my day and treat each one with more honor and respect (rather than fear or ambivalence.)

I will remember to make a strong dose of creative thinking or expression every day, preferably with chocolate.

I will keep on hand a smile, a sense of gratitude and a few laughs to share…just in case I need it.

 I will rest my “shoulds” and worries frequently, so I don’t wear myself down. 

And, most importantly, I will remind myself that, as the dramatist Tom Stoppard once wrote: 

“A healthy attitude is contagious, but don’t wait to catch it from others.  Be a carrier.”