“What is the nicest thing (or things) anyone has done for you since you became ill?”

I believe the nicest things that I’ve received from people since my health challenges hit me have been to offer me reality checks about humanity. 

As difficult as they may feel at first, the comments, behaviors, choices and changes in our relationships have motivated me to respond in ways that have been outside of my comfort zone.  That blundering through my fear, grief, anger, apprehension and surprise has built within me a sense of resiliency that I never knew possible.  It has also led me to some surprising appreciations. 

Those relationships that dissolve due to the loss of knowing which words to speak, or the ugly realization that their patience really DID have an end, offered me opportunities to see that all people are fallible.  It has been easier, after some time passes, to run into these individuals (who walked out of my life or visa versa) and speak to them as fellow humans.  These are simply honest people who may have made decisions that hurt me, but were decent enough to be upfront about it. 

It has been the relationships with my medical teams that have given me moments of vulnerability as well as moments of gratitude.  Beginning with my first practitioner’s refusal to acknowledge the necessity for a urine sample to my specialist’s decision to waive his fees in light of my difficult circumstances, I have learned much about the dimensions of medical care.  The hospital’s response to my then insurance company’s act of betrayal showed me that  they do have the capacity to care.  The laughter and care of the staff, both at the labs or during my hospital stay, gifted me with moments of respite from the uncertainties I was facing.  In fact, I was amazed at the commitment my medical team had shown during my hospital stay by keeping a toxic individual from threatening my chances of survival. It was through their security and protection that offered me time to bounce back from kidney failure by restricting their visits, for which I will always be grateful.  As easy as it sometimes is to become frustrated with how our nation’s medical care falls short or how cold our doctors may seem during our 15-minute appointments, seeing the other side of those presumptions has pushed me to look beyond the white coats and clip boards.  They live and breathe just like I do.

There have been individuals who have astonished me with their compassion and respect, even when they didn’t understand what was going on in my life.  The mysterious food boxes left on my front porch without a note.  The bills paid on my behalf without explanation or warning.  Their cards, letters, phone calls and emails touched my hardened heart with grace and sincerity.  Their well-intentioned, unsolicited questions and suggestions forced me to listen to reason through my veil of distrust and seclusion.  Their understanding that they would never fully know what I was experiencing allowed me my time alone without explanation or apologies.  They knew I needed the time to breathe and, when I felt I needed no one, they helped me to see how wrong I had been to hold onto my pride like a medal of honor.  It was clearly more like a fortress of shame and was something that needed to be dismantled. 

It is easy for us living with illness to see ourselves outside of a mainstream, assuming that those around us are generally healthy and live without pain.  The fact is, our human bodies have the potential to break down in so many ways, some in plain view and some well disguised.  As we physically hurt, those we share our days with also hurt.  By not knowing how to fix things, what to say or where they can make the connection with us to show us how much they care.  Those individuals who keep their distance or walk away are showing us their limitations and vulnerabilities, too.  It hurts to realize we can’t do or must do the thing we sometimes need to do.

I’m learning to see beyond the actions and listen beyond the words in order to understand our shared human conditions.  It isn’t always easy or instantly possible, but I’m getting better at recognizing limitations as simple realities.

It is in facing the walls or getting through the battles that do contribute to my story.  It is the stories of others that help me keep my own story in perspective.  The kindest thing that I feel anyone can do for me is to acknowledge my place here on earth as a part of a bigger story.  I’ve learned that the essence of being human is exploring the complexities of the many characters living within our stories. 

The struggles and villains make the story interesting.  The perserverance to keep going makes it all worth the sharing.

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Visit Q and the rest of the participants at her blog carnival!

Check out Love Simple

Yesterday, I hosted an Independence celebration. Not only for our country’s independence from England, but also as a send-off party for three of the five high school graduates on our street corner.  The boys couldn’t make it, but the three girls and all their siblings (who also are all girls), enjoyed their transitioning from the kiddie table of life to the adult table. 

 As I scurried around making sure all my guests had food, beverages and an enjoyable visit, I:

• slammed my shin into a chair and the door of the dishwasher
• smashed my finger while closing a cupboard door
• hit my head on the deck when underneath while getting the folding chairs
• bit my lip while eating 

And the pièce de résistance? 

Nine of my piggy’s were being cooperative, but the big one on my right foot wasn’t paying attention and jammed itself into a deck stair.  You should see the glorious colors it boasts today for its miscalculation.

You may be asking what my clumsiness has to do with lupus or Independence Day.  Well, it certainly illustrates what a lack of mindfullness can lead to. 

How many times have I been bewildered listening to my mom complain about stubbing her toe on the same table she did the day before?  Over the years, I was unable to fathom why someone would keep doing that over and over again!  She knew the table was there and had the broken toes to prove it.  Yet, she continued.  I am beginning to realize, now, that it isn’t about not knowing where the table is at all.  It is about how our bodies and our brains tend to lose a sense of cooperation as we age.  We know in our minds that the table is there, but the communication with our toes gets lost somewhere in the translation as life, medications, and aging catches up with us. 

I’ve been doing a lot of reading lately about kinetics , aging and our brains and symptoms of health trouble.  That’s mainly because I want to learn as much as I can to care best for my aging mother.  However, as I continue to read and learn, I’m developing an understanding that all of what I’m preparing for applies to me, too.  I’m not as young as I once was, but the increasing bouts of clumsiness are pointing to some of my life’s influences that I am letting get the best of me. 

I know this is a Canadian senior-focused site , but it breaks down some of the more common reasons for clumsiness and you will see how much of this applies to us at any age, lupus involvement or physical condition.  This article also gives us some pointers on what we can do to prevent it, which brings me back to that independence and the postponement for this Wednesday’s gathering. 

Accidents happen and my day yesterday doesn’t necessarily mean that there is anything seriously wrong with me.  However, I am beginning to notice some trouble in maintaining my mindfullness and focus during the day.  When we are younger and/or not under the influence of stressors and meds, paying attention is so much easier.  We don’t realize how much work it takes to be that way until we have days like I did yesterday.   I do know that I won’t be able to support my mom’s (or my even own!) independence if I don’t start intentionally building some cognitive strength along with my physical strength.  To get through our days safely, we really do need both to be on board.

So, once my toe heals, we will be having that Target Practice gathering…if for any reason, to better avoid days like my yesterday.

 Hope you all are enjoying your weekend without any injuries, pain or discomfort~ take care!

I received a note from the Oregon Chapter of the Scleroderma Foundation that they will once again be on our own KATU Channel 2 AM Northwest morning show!  This Thursday,July 1st, AM Northwest will generously offer program time for the chapter’s scleroderma awareness team to introduce information about living with scleroderma and to present the upcoming “Stepping Out To Cure Scleroderma” benefit walk scheduled for July 10th here in Portland.

The exact time for the team, composed of chapter members Maria Rivelli, Sue Pinkerton and Erion Moore,  isn’t set until the show airs, so you will need to watch the entire show between 9-10 am.  This program (and station) has been very generous and supportive over the years, so consider letting them know how much you appreciate opportunities (such as this Thursday’s show) to learn about our local health and wellness resources. 

Also remember to register for the 5th annual benefit walk on Saturday, July 10th.  You can do so by going to  their Firstgiving page .  Also, you can find more walk details at the Scleroderma link under the “Announcements” tab on our main page.

Today, BloggersUnite is hosting an online event entitled People First: Empowering People With Disabilities .

I’ve been having unusually prominent symptoms from my lupus.  I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years.  Naturally, my first concern is that my kidneys are in trouble.  The rates of kidney involvement for us with lupus averages about 50%.  I’m one of the lucky ones where it went straight to my kidneys to begin with, and I do mean lucky.  Since there isn’t much to do for my lupus via medication, having the back up of dialysis and decades of kidney research gives me a sense of assurance for a ‘Plan B’.  Of course, it is a moot point since it doesn’t do me much good without medical insurance or a nice nest egg to pay for it.

So, my imagination has been going wild with concerns of clotting and strokes, MS, CNS involved lupus, and so on.  It’s amazing how much panic I can stir up when my body sends me the signal that something is amiss, no matter how truly insignificant.  Clearly, I do not appreciate all that I am blessed with health-wise, if I can be derailed this easily.  What a baby. 

I know some amazing people living with much more challenge, heartache, spirit, grit and courage than I do.  I am honored to have these friends encouraging me to take what life throws at me and who always teach me something about my perspectives, judgments and biases, character and life, as a whole.  I don’t want to learn how to make more excuses or whine about my supposed bad luck.  I want to learn to be strong, and my friends (who I feel deserve to have their abilities mentioned rather than their dis-abilities) have a particularly keen ability to get me off my lazy tail end and try harder.  It is these friends I want to honor today and thank them for making my life more interesting, fulfilling and humbling.

I want to quickly mention a few websites that I visit as often as I can, to learn more for my friends, myself and my family. 

Disability Studies, Temple University  features exceptional writers, topics, information and many more notable blogs or websites to visit.  I am not living with a disability, but always leave this resource with something to consider and someone to learn more about.  

Lupus has been included under the ADA guidelines of disabling conditions or diseases.  However, the protection within the workplace or even within the medical community seeking/maintaining insurance coverage is still pretty vague and inconsistent.  If you are in a situation at work where maintaining employment has become a problem due to your chronic health challenges, I highly recommend you check out my friend and chronic illness coach, Rosalind Joffe .   She is a wonderful resource for anyone living with a chronic condition who wants to succeed in finding their place in the workforce.  I’m currently going through her workbook that compliments her book Women, Work, and Autoimmune Disease:  Keep Working, Girlfriend! that I have reviewed here Here are a couple of her blog posts that address disclosing your health, your rights to learn more about and some recommendations. 

Job Interviews and Disclosure

Insurance benefits and Disclosure

Also, for anyone looking for more information about advocacy for chronic illness disability, here are some additional resources we know for you to check out: 

National Resources

Advocacy for Patients 

US Department of Labor  – Office of Disability Employment Policy

Oregon Resources

Disability Rights Oregon  

Disability.gov 

For Oregon Employers

Oregon.gov FAQs regarding disability in the workplace  

If you know of other online or Oregon resources, please be sure to leave them in the comments section here.  We are always looking for more to add here on the website.

Here’s to emPOWERing all of us~ we all bring something to the table.

Monday was a day set aside to reflect on personal sacrifice, dedication to values, making commitments to those we share our lives with and things to believe in.  It was a day when we said “Thank You” to all those who have, and continue to be, on the frontlines for us all.  

As I prepped my dedication to my grandfathers who took their place in WWII, one sent against his will to the Russian front by Hitler and the other who willingly left his home here to fight against all that Hitler stood for, I also sent my thanks to the many people I have had the opportunity to talk to these last five months.  

I have been pretty absent from the blog here, my Twitter and Facebook accounts, the newsletters and blog carnivals I usually write for, the book discussion group and other social networking groups I belong to.  I feel bad about losing touch with the many wonderful people I’ve grown to love hearing from.  However, I knew this January that it was time to get out here locally to do much more person-to-person outreach work in order to learn as much as I can about all of you living here in Oregon and SW Washington.  I know I’ll be back online to catch up with my friends eventually, but I also know that there is only so much time and energy I have to work with.  Right now, it’s time to get out into the local trenches and begin getting a clearer picture of what our health battlefield really looks like here. 

Over these past months, I have had conversations with individuals who live with illnesses of many types and have heard the same words used by them as I have heard referring to this weekend of remembrance: 

“I have lost someone dear to me who fought as hard as they could against lupus.”

“I walked into that appointment as one person and came out of it as someone else.” 

The symptoms change all the time and I never know when they’re going to hit!”

“The problem is, it’s like living with an invisible enemy that only I can see.” 

Monday also marked the end of Lupus Awareness Month, which I was pretty absent from participating in this year, too.  Some of it was in response to the lack of entries to our awareness event this year.  Last year’s event was amazing, while this year’s fell on deaf ears—even the ears of my closest health blogging friends.  In fact, it appears that many fellow health comrades have been MIA right along with me.  Or, dare I say, outright deserters?  If we have a choice to step out onto the battlefield or pursue different paths that bring ourselves peace and joy, why would we choose battle? 

There are some strong similarities between war and illness, which is why you will often hear military speak used in health publications and public awareness campaigns.  There is something admirable about making it through formidable health scares and wearing our ordeals like badges of honor.  For those of us who see ourselves as lupus veterans, we wish to tell our stories because getting through it all truly pushed ourselves into situations we never knew we could possibly survive.  And, again as war veterans do, we sometimes have to deal with the questions and judgments from those who believe that our stories glorify something ugly and unnecessary.  The judgments are harsher for those who either willingly sign up to defend or for those who seem to have brought on their health challenges through poor choices or habits.

When one is drafted into a war that we don’t understand or drafted into health challenges we don’t understand, experiencing those barriers put up by others is difficult to take and quite painful emotionally.

When we are put into situations that are as harsh and sometimes brutally real as both war and illness can be, being able to speak openly about our experiences are more about our own survival.  Getting through things we never thought we would get through gives us those badges of honor. We need to acknowledge those hardships, because they become concrete parts of our identity and never truly leave us once they are within us.  We all have different levels of tolerance and the capacity to get through a scary experience varies from one person to another.  When we have had particularly traumatic experiences, the need to work through them emotionally does require using our voices to release the thoughts, fears and hurt we go through.  We need supportive reassurance to help us understand that we have either done or been through things that we truly didn’t deserve.  For those who seem to deliberately walk into harms way, there are belief and value systems that are so deeply embedded into who we become that choice isn’t really what happens within us at all.  It’s simply acting upon what we know and feel to be true.

In any event, judgments serve no purpose in supporting each other through the ugliness that life can often put us through. 

I have come to appreciate even more how important just listening to someone’s experiences offers so much insight. Not just about the person telling the story, but who I am and how their experience does apply to my life as well.  Even without going through their battle or seeing their viewpoint from where we stand, we never know what we are capable of until we have to be there or make those difficult decisions.  In fact, choosing not to make the difficult decisions can cause even more pain for ourselves and others.  For those of us fortunate to not having to see ugliness firsthand, we forget how much we benefit from those who do.  We learn from them that we need to work harder in preventing those situations that do so much harm.  We learn that it takes a great toll on those who have to carry that ugliness and loss around within them.  It also teaches us that we all share one experience—the human one—and it requires finding hope within every experience to keep us all going. 

Thank you to all the wonderful ladies who have spoken with me these past weeks.  Thank you, veterans of all types of wars, who did what so many of us didn’t have to or couldn’t bring ourselves to do.  I recognize the prices you have had to pay so that I might learn. 

I honor your courage.

Her post reflects many common thoughts and threads about support groups, be them online or in-person, and I’m glad to see she’s putting her thoughts about this issue out there.  With the increasing availability of online support resources, I’ve been tracking to see trends in how in-person support groups will fare.  Although we would assume that everyone is online these days, you will be surprised to know that we actually use the computer less than other countries and I regularly hear from people when I’m in the community that they don’t use the computer for much of anything other than online banking.  As more people catch up with the idea of using Facebook, Twitter or other online social networking sites, I am watching many of the health veterans that I have followed for the last few years dropping off the radar.  There is a changing of the guard, so to speak, with new writers and new voices being added to the conversation of chronic illness advocacy and support…just as it should be.  One voice can’t cover it all.

That’s where I think Leslie’s post brings the idea of support groups as an option to help cope with illness mirrors this change in what we’re seeking in support. 

I did a local research study some years ago for a health foundation here in Oregon to learn a little about lupus support group participation.  What was important about my study is that I also interviewed people who chose not to attend groups, which usually isn’t the case in support group research.  One result from my study showed women who chose not to attend lupus groups had positive views of groups, but didn’t think they needed them, because they had enough family support.

What I discovered, though, is that they worked very hard to not burden their families and sought their emotional support needs from their doctors.

  Anyone here have a 10-20 minute appointment with their doc to sufficiently address their emotional needs?  My guess, and from what I hear from many people here and all over the country, is no. 

What I found, and what I’ve experienced personally in attending groups and living with lupus myself, is that support is a term we all need to define for ourselves.  We also need to recognize that our needs aren’t fixed, but change and adapt.

  I would have to say that the key is in determining what works for you and to make sure that, whatever your support need is at a particular moment, you match it with the right type of source to make it effective.

The wonderful thing about support theses days are the amazing number of options that are available, that weren’t available even a few years ago.  If you don’t want to attend the groups in person, then don’t but be sure to ask yourself what it is you do need.  If you aren’t making a connection with the group you are attending, then seek another to try out.  Personalities, facilitator skills, content and convenience are all factors to consider when opening up your life to others.  If you can’t find a specific group in your area, say a lupus group, then consider attending another group that is similar.  For example, I frequently recommend the local Scleroderma support group to people living with lupus here in the Portland area as a wonderful option, even if it isn’t specifically for lupus.  That’s one reason I work closely with them as a resource partner, because they have their groups open to anyone and the health challenges between people living with scleroderma and those with lupus have more in common than are different.  If you’re in the Portland area and want a supportive environment with an amazing bunch of people and terrific speakers/activities, stop by and meet them .

Online support is great for those who need the convenience or anonymity to reach out to others in time of need.  The more variety we have in our support sources, the more likely we will be able to match our needs with something that works and get us back on our feet much sooner.  There is no right or wrong support resource—only the right or wrong match. 

I would love to hear from you on the types of support sources that you use or what types of support you’re looking for and can’t find, especially if you live here in Oregon or SW Washington.  My goal is to fill some gaps among services already out there.  Your voice will help some of those options become available. 

Thanks, Leslie, for contributing to this important conversation~

The thing about pain is that when you don’t have it for awhile, you really do forget what it is like to live with it.  I’ve been so fortunate to have made it through the pain I had right before my diagnosis and left it behind for nearly a decade.  I am grateful for every day, believe me.  I know that there are so many out there who are begging for a month, day or even hour without being held hostage by their bodies.  When my headaches started in, I first blamed lack of sleep and intended to tough it out without meds.  By the fourth day, I was taking any sinus, cold or allergy pill within reach.  I gave in to the pounding temples, throbbing eyeballs and the sharp jolts of pain that felt like what I only imagine an exploding vessel would feel like.  However, the worst thing wasn’t about having to take the pills or even having the pain again.  It was being reminded that my life can be brought to a complete stop whenever my body demands it.

While my head was exploding, I felt like I couldn’t do anything.  Read, spend time at the computer working or goofing off on Twitter, watch TV or sleep.  I couldn’t plant my garden or catch up on any house chores because bending down and moving around just made my head hurt worse.  I was just stuck sitting and fuming about the prison term I was being forced to serve without any explanations.  Living with an illness can get like that and I was seeing myself as unproductive, not getting to the things that I knew I wanted to do. 

 The challenge, though, went beyond the pain as I began to truly notice my response to it.  I realized that the things I do most often were those things I couldn’t do during my body’s rebellion and it left me aware of how limited my coping tools were in a ‘pinch’.  My head was pushing me to step outside the ‘box’ and force me to explore some new skills. 

 I brought out my art supplies, took walks, made soups and had long talks with my daughters. The third day into it, I noticed no headache until noon, then 3PM, then a day without and so on until now, where it’s been three pain-free days.    

This month is awareness month for many illnesses that involve chronic pain such as Fibromyalgia, Arthritis, Lyme disease, and, of course, Lupus.  Every day, there will be bloggers, news research articles, internet conferences and radio programs, ad campaigns and updates/tweets on the popular social networking sites.  Awareness isn’t limited to online activity either.  For example, The Pacific NW Chapter Oregon Branch is holding their walks this month (http://www.arthritis.org/chapters/pacific-northwest/events.php).  Also, this weekend, there will be a local health event here in Portland hosted by the Jewish Family & Child Service.  ”A Day of Empowerment, Solutions, and Support for Individuals with Acute or Chronic Illness or Disability and their Friends and Family ” will be held on Sunday, May 16th, from 10AM to 2PM.  For those of us who are struggling with our health, this event offers a variety of presenters and exhibitors (including MLWT as both) to help find some supportive resources.  For us like me, who are blessed with having more of our time pain or challenge-free, it is a valuable reminder of how we still have to prepare for when our bodies rebel.  Living well is grounded on strengthening individual empowerment and, even though we may never be able to control our pain or symptoms completely, we can control our responses to it.  Not simply by thinking more positive, but being willing to think outside your own box.  

Hope to see you this Sunday~ it looks like there will be some great presenters and exhibitors to explore.  MLWT Guest blogger and new parent support practitioner, Sarah Nuxoll, will be sitting with me at the MLWT table enjoying the event, too.  Stop by and say hello~

“Here’s a few details from the instructor about the next Scleroderma Support Group meeting featuring a Pilates presentation by Mckenzie Petterson (photo attached) at 10am Saturday, May 8 at Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor), 1015 NW 22nd Avenue, Portland, OR. 

The Support Group meeting and presentations for Portland and SW Washington are always free and open to the public.   

1. No pillow necessary. Comfortable clothes preferable (no jeans). 

2. The Pilates will be tailored to scleroderma patients. 

3. Attendees will not need to move around a lot.  We will either sit in their chair or stand (probably both). 

4. I will make a short “workout” for them that will be passed around.  I will include a few anatomy pictures as well that we will go over. 

5. People should be expecting to listen to a short history of Pilates and an explanation of what it is. I’ll also give a little personal history of myself and why I do what I do. I’d like to also take a look at the anatomy pictures before we move. We will then do seated breath work. I’ll probably go through a few exercises focusing mainly on range of motion and core stability. I’ll also bring in spiky balls which I have found very helpful with a few of my clients that deal with joint issues.     

Mckenzie Petterson opened Moving Moxie Pilates in 2008 after training with the Core Dynamics Pilates program. Her love of Pilates started in 2002 when she realized the amazing impact it made on her body and overall health. Mckenzie’s ultimate goal is to see a smile on everyone’s face as they make their best effort in class, be it a group mat class, duet or private lesson. Kenzie was trained by Core Dynamics and is PMA certified and utilizes every opportunity to continue her development as a Pilates instructor and small business owner.”

“What we call a symbol is a term, a name, or even a picture that may be familiar in daily life, yet that possesses specific connotations in addition to its conventional and obvious meaning.”  (Source:  Jung, C. (1964). Man and His Symbols, (Ed.). New York, NY: Dell.)

I came across this definition the other day after seeing several references to images being used to describe health challenges by bloggers, tweeters, authors and fellow patients.  Use of symbols, icons, or archetypes is deeply rooted into our human existence and I’ve noticed many patients rely heavily on images to develop a sense of personal understanding or acceptance of life as they see it.  Some images are man-made and have meaning applied to them on behalf of what is collectively agreed upon.  Others discover something on their own, that identifies or expresses what they need to say whether others ‘get it’ or not.

Take lupus, for example.  We see wolves, butterflies, the color purple, or the advocacy wrist bands.  Sometimes words are used to help solicit an image when read, such as “survivor”, “warrior”, “lupie”, and so on.  Heck, even using social media for networking with other patients adds to the word list like Twitter “followers”, Facebook “friends” or “fans” and some sites use ranking terms such as “expert” or even “ninja”.  This is very natural for us to do and we may not even realize it consciously, as in using something to remind us of future events.  We automatically apply images while we doodle, decorate or through other more creative, right-brained endeavors.

Having used the super hero Wonder Woman (DC Comics ) for years, the obvious unrealistic physical dimensions aside, I recently reconsidered that image for myself lately and whether it still applies to me today.  Things have changed since I began using her image to lighten up what I was experiencing with my lupus and daily life, in general.

Choosing an image that personally fits our perception of self is important, in order for it to be effective as a source of inspiration or expression.  Keeping that image or symbol current, however, is just as important and revisiting the one(s) we use needs to be done periodically.  As we all know, lupus isn’t a constant state of being—it’s a daily experience.

May is coming up quickly and that means it is time to get ready to host our annual MLWT Lupus Awareness Month event.  Last year, we invited all of you to submit your thoughts on what lupus meant to you and/or your life.  This year, we want to take that one step further and open it up beyond just words.  After all, sometimes words just don’t cut it, right?

We invite you this year to explore the symbols you use in your life to represent, cope with, express to others or identify with in regards to lupus.  Do you use the collective butterfly or do you have some other image that you feel represents your lupus more effectively?  If you don’t have one symbol or image, we invite you to contribute a photo ‘portrait’ or visual representation in one shot that you feel tells your story, experience or perspective.  Your garden, your pet, your latest craft or artwork, a scene from a trip, any culinary masterpiece or favorite food (i.e. chocolate?  Why not?)  You can find a couple of my examples here and on blog posts for the next two weeks before May 2nd to get you thinking about your own images.

If submitting portraits, we ask that you do not submit any photos that identify or show the faces of the subjects, due to legal and privacy issues.

The catch in the submissions, though, is to create them around the word “strength”.  We are choosing this theme for two reasons: 

1)    How many times have we heard someone assure us that we don’t appear to be “sick” or that we look “fine”?  Do we take a minute and realize just how much strength it takes within us to look that way to others, while our bodies are being ravaged by our own immune systems?  Our guess is, “no.”  We want to focus on that strength, which using symbols or images are often used for, that helps us recognize what it takes us to get through the day and honors us with some self-care.  We spend a great deal of time caring for others, so May will be an opportunity to care a little for ourselves;

and 

2)   MLWT is not only about sharing with others who are living with health challenges, but also working towards sharing our lives with others who are not facing any current health challenges.  This could be family, friends, employers and co-workers, teachers, neighbors, politicians and public servants.  We at MLWT believe that the best way to advocate for lupus awareness is to live with it well and make it relevant to others, based on our strengths rather than any limitations. 

Beginning today, take some time to re-evaluate your symbol(s) or create an image that helps define and express your life with lupus.  It may be obvious, as Jung states in his definition, or more subtle.  We envision examples of work including photos since we are focusing on imagery, but as I mentioned earlier, words can bring out images, too.  If you aren’t inclined to submit any photos, don’t let that stop you from contributing something in writing. Favorite recipes, poetry or quotes, short stories (limit 1000 words), sharing of memories and lessons learned that represents an idea you use for your tomorrows. 

Send us your submission by email (mylifeworkstoday@gmail.com) with your  .jpg (common photo online format) and word document ( if written) attached.  We simply ask that you honor the intent of this event by practicing some discretion, as we will not be responsible for content that is deemed offensive by some or do not observe all copyright and/or trademark laws. 

All submissions are to:

• be your own, original work
• include your first name;
• any contact information, if you’re interested in hearing from others via emails, Twitter or Facebook
• include a little blurb sharing what your submission represents for you. 

We reserve the right to refuse posting submissions if we do not believe they represent the mission of MLWT, the spirit of this event, or honors the safety of our community.

We are looking forward to another wonderful event and to learn more about making lupus visible, by expressing the uniqueness and strength of each one of us who lives with it.