This Fall, the focus here at My Life Works Today! begins to broaden its scope and explore the common themes involved in living with chronic illness.

Initially, I started this network in 2008 to bring some awareness and resources regarding lupus at a time when very little was offered here in Oregon.  In 1998, I searched for local resources as I entered into a life with lupus and, in 2003, it was still difficult to find much of anything that felt relevant to my experience.  By 2008, however, I tired of the empty void and threw into the internet cosmos an idea, making use of the burgeoning social media to help me putOregonon the lupus map.  I had hopes to raise my voice and make the word “Lupus” more commonly heard so that when people Googled “oregon  lupus”, something – anything – would pop up.  It now does, along with the many other voices that have joined in, so my original MLWT project goal has been met.

Today, MLWT has evolved from a lupus patient-focused networking hub (pre-cursor to the online resources like Twitter, Facebook, Ning and other communities) towards a chronic illness health and wellness resource collective for professionals, programs, foundations, authors, advocates and service providers focusing on autoimmune and other syndromes or illnesses that are difficult to diagnose.  MLWT is for those living with health challenges that are often referred to as “invisible”, simply because the true pain and chaos we are experiencing with our health isn’t generally visible to others making it difficult for us to explain.

This next phase of the project will be to incorporate general wellness resources already available, both locally and nationally, in a more cohesive manner recognizing that there are more things about us in common than truly different when living with a chronic condition.  No matter what chronic disease diagnosis we have to accept, the common theme is that our health challenges are chronic and won’t go away.  There is often pain and repercussions from medications. There is need for daily exercise and movement, requirements for proper nutrition and access to mutually-respectful medical support.  These chronic conditions can be costly in many ways, but can be managed to some degree by taking care better care of ourselves.  My hope is to continue to highlight the tremendous talent, services, programs and resources we have here locally to consider and/or explore in designing your own personal wellness goals.

My Life Works Today! began as a statement reinforcing the idea that life with lupus forces us to manage our daily expectations in order to self-manage our health over the long run.  Lupus is what I know and I will continue to create this place of encouragement for those seeking a connection point to their own wellness possibilities.  The tagline, however, is changing in order to reflect the new emphasis:  Your Life.  Your Wellness.  Your Way.

I will write more about my new directions beginning September 18th, including online options for those living outside the Pacific Northwest.  In addition to changes in the MLWT program and on the website, the MLWT Mailing list will be activated to send out seasonal MLWT newsletter updates (four each year).  I will also be putting into motion the P.O.R.T program (People Offering Real Time) for those of you living here in Oregon and SW Washington.  As is with change, there are bound to be some bumps along the way.  I’ve been battling a number of them for the past month and hope I’ve cleared a smooth path to get us going.  If things don’t look right, aren’t received or don’t work, you know my email…just let me know.

I do appreciate your patience and support during this exciting time for all of us.

Maria

Leslie over at her blog,Getting Closer to Myself, fills us in on her dissertation adventures coming up this July and August in her contribution “Traveling (Alone) With Lupus And Rheumatoid Arthritis”.  Already a veteran to the travel scene, she knows all-too-well the toll it takes on her both physically and emotionally.  Adding in a new medication to her repertoire this time around, Leslie reminds us all that when we are living with chronic illness, we are never truly traveling alone.

Hayzelle echoes the reminder that summer vacations are meant to relieve our stress, rather than bring on more.  One of Hayzell’s goals for this summer is to travel in comfort and not let chronic pain get in the way.  At her site, possibilism.org, she tells about what she has learned and gives 15 great tips for traveling with less pain in her post “15 Tips for Painless Travel” .

Kimberly Kaye has chosen to celebrate the wonderful certainties of her life ~ such as family fun ~ and set aside the worries of all the uncertainties she’s facing right now with her health.  Some traveling to Kentucky, some coastal excursions, and lots of photo opps.  The name of her blog says it all: learn.love.live and you can read her summer mantra in her submission “Summer Plans“.

For me, I may get to the coast more often this year, now that one of my friends has been offered the opportunity to enjoy ‘retirement’ a little early.  I plan on taking advantage of her wonderful offers to stay over in Astoria and maybe meandering my way to other coastal places I haven’t been to in years.  I have also agreed to take my girls by train to Seattle some time and will be hosting a visit from a good friend I haven’t seen in years.  Even though she will be doing the traveling up from California, we will both be taking part in traveling back in time as we attend our 30^th (yeah, we’re that old) high school reunion.

I think the biggest trip I have planned next summer, though, is straight down…but in a good way.

I have decided to commit to raising donations for an organization called Leap For Lupus .  Since 2004, this organization contributes 100% of the funds they raise to research to the University of Washington Division of Rheumatology , as well as take part in the annual fundraising walk put on by the Alliance for Lupus Research (ALR).  Valinda Mitchell’s enthusiasm for diving and advocacy has proven to be infectious enough for me to throw out all sense of reason and take my own leap of faith.  Beginning June 1^st, I will be hosting a donation button on the site here for people to consider the following proposal:

I am committing to raise $500, which is my goal, up to August 1st, 2012.  I figure that all I need to reach that goal is to receive $10 from 50 people, but rather than simply ask for the cash, I am offering an opportunity for people to celebrate themselves, or someone they know, on the jump.

I haven’t figured out the specific suit set-up yet , but I envision providing ‘space’ on my suit to transfer photos, bios, wishes and so forth of individuals living with lupus.  I know that I am very fortunate to be able to physically take this leap and my way of sharing the experience with the many wonderful people who share my lupus journey here on the ground would be to take them with me.  I initially wanted to offer video of the trip down…again, I’m working on the details…and, if I can get someone to help me figure things out, I see a YouTube video in our future.  What you will definitely receive is a pic of your transfer on the day of the jump and a certificate to commemorate the event.  Stop by Leap For Lupus and learn more about these great individuals.  I hope you will consider joining in on this leap of faith with me and helping further lupus research for all of us.

For those of you who wanted to take part in today’s PFAM, but couldn’t make the deadline, this post can easily be added to if you still want in.

Here we are again~ National Lupus Awareness Month.  International Lupus Awareness Day is May 10^th.  In Oregon, SB348 (Senate Bill 348 designates May of each year as Lupus Awareness Month and makes May10, 2011, Oregon Lupus Day.) reflects the same awareness calendar, spotlighting lupus on behalf of many of us living with lupus…or does it?  

I’ve been at this blogging and social media stuff for a few years now, so I am used to the awareness and advocacy commitments made in other states.  In my own state, I’ve grown used to the silence in those areas and have backed off on trying to understand what makes Oregon either so private or so uninterested.  Actually, so have many organizations, services and programs.  From what I’ve learned, we don’t tend to join organizations because we don’t want them asking us for money or to volunteer our limited energy for events.  Both are reasons I can relate to, which is why I’m not a non-profit. 

Yet, it never fails~ I will be in the midst of a conversation with a bank clerk, fellow coffee addict waiting to order, librarian, hair stylist, nurse, my daughter’s teacher, and others, when they will share how they know someone living with it.  The topic usually comes up when people ask me what I do for a living and I mention that I am a wellness facilitator.  Naturally, that will require a little more discussion and up comes the ‘L’ word –  “lupus”.  What I can always count on at that point is that they will utter the phrase: ”Oh, I know someone with that” followed closely by either: 

a)  “She’s really having a hard time.” ; or

b)  “She’s doing pretty well.” 

We all seem to being doing okay, but no one really knows.  The State doesn’t keep track of lupus and lumps it in with arthritis.  Rarely is it listed on a death certificate and medical providers don’t have the time to get involved with surveys or questionnaires to help us learn more about who we are.  My own rheumatologist doesn’t even believe I have lupus anymore, because I don’t show any signs of it in my labs or symptoms.  More specifically, he suggests that I never had it to begin with, because it doesn’t really happen here in Oregon due to our overall racial demographics. Yes, here in Oregon, despite it being predominantly Caucasian, there are people living with lupus, doc. Do your research and you’ll see there is a particular group of us with lupus who present differently, but we still have lupus.  My feathers were a little ruffled by his comment, mainly because I work hard at managing my lupus, and there he is minimizing it all.  I think the hardest part is really getting a clear picture about what  lupus is and finding some agreement among all of the communities who are working/living with it. 

In the last couple of years, I’ve tried to come up with projects that reflect the month-long lupus activities by approaching ‘awareness’ in a different fashion, to compliment everyone else’s work.  The use of social media and blogging has increased exponentially, offering more to read, learn and take part in than ever.  I know that readers will not have any trouble in finding stuff and probably more trouble in keeping up with all of it.  So, that leaves me with the question:  Where is my place, on the part of the silent Oregon lupus majority, in reflecting what we here think about, need to live well with or can benefit from regarding our lupus. 

I’m at a loss.  Not because I don’t think Oregonians have lupus, but because I don’t have enough to go on due to their lack of voice.  I am uncomfortable in representing Oregon, which MLWT has grown to be, not really knowing my own community. 

I have done a little research and am busy in the community these days with events, workshops and classes, collaborations, referrals and my direct services.  However, in order to keep things growing, I have had to expand from lupus out towards autoimmune and other lesser-known chronic illnesses.  Even though I hoped MLWT could be a hub for those with lupus, I have been excited to see that by including and incorporating what I do here has overwhelmed me with a sense of comfort to see how much we all actually share rather than differ in. 

This month, I’ll be writing more frequently and it will be covering many aspect of living with chronic illness, not just lupus.  I hear from more people with fibro than lupus, and I want to be sure to commemorate National Fibromyalgia Awareness Day in their honor.  I will be hosting guests, both locally and nationally, to write about what they know, what they do and what they recommend.  I’ll be highlighting some books and tools that are valuable in strengthening wellness self-management. I will introduce more specifically some of the work I do and how I do it.  I will be spotlighting some local health resources and reviewing some of my favorite places to visit on the web.  I will be busy with Living Well with Chronic Conditions classes and starting the pilot exercise class through the Arthritis Foundation.  I will be heading up to Seattle to help with the LFA’s Pacific NW Chapter support group facilitator training this month (it will be here in Portland next month on June 11^th).  These are just a few things I do regularly, but I will take this month to make things more visible.  Maybe if I open up about who I am, so will you. 

My calendar is beyond full and I know I am going to be working over-time, challenging myself in practicing what I preach: balance.  However, I think that if I get busy writing about our lives as a collective of experiences, rather than focusing on a particular disease, maybe I’ll have the opportunity to meet (and hear) from more Oregonians.  Perhaps you’re doing ‘just fine.’ Perhaps you’d prefer to handle things yourself.  Perhaps you aren’t ready to ‘accept’ the illness, concerned that seeing it makes it final.  Whatever the case, MLWT has become a beacon of sorts representing a voice, not a non-profit.  An idea, not a sound bite.  A collective, not an exclusionary group with their eyes set more on copyright than support.

I encourage you to get to know me and MLWT a little better this month.  Not as someone who knows more than you about living with health challenges, but as someone who wants to learn from you in order to do things better. 

I want to boost my awareness of those with whom I share this beautiful state.  Of course, I learn a great deal from others outside of Oregon and SW Washington, too, and I certainly want to keep hearing from you, too. 

So, gang, here we go! Today begins a month of spotlighting not our lives with an illness as much as succeeding with health challenges that makes our lives worth being aware of.

The inspiration for this project was taken from various website sources on the late Saul Steinberg’s work from the 1950’s and 1960’s  You can find more of his work at  Martha Stewart’s website  or even by simply searching  his name in Google images.   My theme for the week will be to illustrate (illuminate?) what living with lupus can be like for me.  Today, I’ll introduce you to Maria’s Lupus.  Stay tuned for the antics that are sure to follow.

So what are you waiting for?  Grab a paper bag, get creative, and show us your pics.  Submit them to me at maria@mylifeworkstoday.com or Leslie’s  blog.  If you’d rather post your photos directly on your own blog, then share the link with us so that we can share them with our readers during this week.  I will put together a new page to showcase them all! 

A couple of things to keep in mind: 

1. NO plastic bags.  Paper ONLY.  (Obviously)
2.  We know that many of you may have more illnesses than fit on the paper bag. Represent what you want to and leave out the rest, if you’d like.  It’s all about you~

Check here throughout the week for my theme “Living With Lupus” and be sure to visit Leslie’s  blog for more examples and contributions from others (also on our blog here through the official Invisible Illness Awareness Week September 13-19th.  I’m sure you’ll find something to get your creative juices flowing.

Looking forward to ‘seeing’ what all of you have to share and meet all the new faces out there!

“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.

Today, this post is a catch up response and I need to write it all out, so that I can make some room in my head for the piles still sitting on my desk.  Hang with me today and maybe there is something that will be interesting or useful for you, too.

The first thing I want to mention is that March is Worldwide Red Cross Month.  Although we with lupus are not exactly the donor pool they’re looking for and deal with more than our share of lab work, there are still several ways to contribute back to our community.  The Oregon Trail Chapter of the Red Cross has a blog ,written by locals, offering opportunities to learn more about what’s available here.  In fact, I have recently signed up to take an Adult CPR class in April (as my first step towards some certification credentials.)  Their blog offers other things such as free tickets, local event information and even little snippets like the recent post about a landmark I remember from my childhood growing up in Forest Grove .  The blog is full of information and is now included within my favorites.  I recommend you check it out.

Another postponed task is the “Part 2” of my conversation with Roxanne Black (now Black-Weisheit)—author of the book “Unexpected Blessings: Stories of Hope and Healing” .  It will be posted as soon as I dig it out of the drafts file of my emails, where it’s been sitting and (amazingly enough) never sent itself to her for review.  Go figure.  As soon as she gives the okay, it’ll get it posted.  The book discussion for February and March concludes this week officially, but the discussions on Shelfari.com are continuous. To catch all the discussions so far, click here .  If you don’t get the book we’re covering while we’re discussing it, you can join in later no problem.  Fortunately, I have been able to get the authors of the books to do open question and answer, so if you have any comments or topics you want to cover at any time, please feel free to join in. If you don’t want to join up officially, email me and I’ll do the work in getting your note out there for you (and anonymous is fine.) This book has been less of a discussion and more as a recommended reference book.  Those who haven’t participated in the discussions, but have mentioned to me through the other networks I (Ning communities, Facebook, Twitter) and emails, mention how they use the book as a quick source for inspiration or food for thought.  It is a light read, but one that can easily shed some ‘light’ on those days where all we seem to see is the dark. 

The next book discussion in April will be “Little Bee” by Chris Cleeve.  This will be our last discussion until Fall, as we will be shifting towards different seasonal activities.  This next book isn’t  lupus focused, but is about the enduring relationship forged between two women and the story that materializes from a single choice.  A couple of people have requested it and I have heard that it’s a good one.

You may also have noticed that we’ve added an email registration on the right side of the site.  This acts as a sign-up for events, workshops and target get-togethers, community social events, participation in the P.O.R.T program  and local research projects, and for future notices or invitations.  As I would expect from any site when handling my own contact information, your name and email information is never sold to any third party, nor will there be any marketing solicitations.  This registration is merely a means to connect with you out there both locally and nationally, to help build up our services and information data base.  Of course, you can withdraw your information at anytime by emailing me directly. 

With the weather improving (fingers crossed), I’ve had conversations with readers who are interested in partnering up for outings including quick walks, meeting up for coffee/tea, and other opportunities to get out to enjoy the Portland-metro area with individuals who have lupus or lupus-related illnesses.  MLWT partners with other chapters including the Arthritis Foundation Oregon Chapter , the Oregon Chapter of the Scleroderma Foundation , and a few local support groups including fibromyalgia and Living Well with Chronic Conditions , so the get-togethers aren’t limited to lupus only.  There are other social groups offering similar ‘meet-ups’ for activities, but there is still the concern about the varying degrees of ability we experience from day-to-day that the general group participants/leaders don’t account for (because they just aren’t aware, not because they’re clueless.)  Meetup.com offers quite a variety of opportunities.  I belong to the Portland Women’s Outdoor Club  and I really encourage you to join one!  Our P.O.R.T. program is a more defined social gathering designed for those who feel support groups aren’t for them.  Support comes in many forms and MLWT aims to provide as much variety in offering support opportunities for individuals to find the type that works best for them.

In addition to keeping these outings quick, and targeted towards the level of ability for that day, some of these gatherings will include a local professional or a  MLWT Guest blogger who will join in with the group as we do an activity and talk about topics within their specific expertise.  So, as a means to really sneak in the exercise we (I) often push aside, these local gatherings will incorporate a short educational aspect and opportunity to meet potential local health connections.  These new gatherings offer an additional benefit:  they connect participants directly to the outside community (and form the foundation for our P.O.R.T. program.)  So, even if you have limited energy or experience severe health challenges, the goal is to offer a variety of opportunities to help you bridge with others in-person, which is extremely important and necessary for our overall health.  Some of us have Skype, which is the ability to have audio and video when speaking with others through the internet, but that is still no substitute for the real thing (which we will be hearing more about that in future research, I guarantee.)

Finally, MLWT will be offering a class on a topic for anyone living with chronic illness (pending final review), a workshop on bridging our health and work selves, and specific products that are designed through collaborations with local businesses.  I’m currently completing some professional certifications that will be filling out the rest of this MLWT project in order to offer more specific support services.  It all seems to be taking awhile, which is why it is sometimes really quiet here regarding posts.  However, it is wonderful to be coming up on our second year and seeing this project become a more established community service.  I want to thank many of you who have contributed your time, expertise, energy and stories (locally, nationally and internationally).  You have been key in its fruition. 

As always, if you know of someone with lupus, who may have lupus or you yourself have lupus and want to make a health connection, the MLWT lupus “hub” is here to direct you to available resources within our  community.  Referrals are made only to area organizations, foundations, chapters and other professional sources who all have particular strengths to offer and take their missions about health and wellness very seriously. 

Whew!  Now, back to work.  Wishing all of you a wonderful week ahead!

Have You Experienced a Lifetime Cap on Your Health Insurance?

The Scleroderma Foundation is interested in speaking with scleroderma patients who currently have lifetime cap insurance policies and/or who have experienced a cap limiting their access to healthcare.

Individuals who fit the description(s) above are asked to contact Sondria Berman toll free at 1-800-722-4673 ext. 48 or by email at sberman@scleroderma.org to discuss a possible media opportunity.

 All candidates should contact the Foundation on or before Tuesday, January 12th.

 Thank You!

A quick note, thanks to a reminder from Rheumatoid Arthritis Guy , about a very important day today. 

Today is Kiss a Caregiver Day hosted by Caregiving.com .  Take a minute and stop by this wonderful website, learn more about Denise and what she offers, and give the caregiver in your life a peck on cheek to let them know how much you appreciate what they do.

In fact, chances are, you are taking care of someone, too.  Even if it is you taking care of yourself (which you should be doing), share a little love where it needs to be.

                                                                                                    ~Ashleigh Brilliant

I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action plan that she will follow through with.  She actually knows everything she needs to do, but, because she over thinks everything,  nothing was getting done.  That habit of thinking things to death leads her to feeling to “overwhelmed” and having me there to go through the process with her, she tells me, always energizes her to accomplish her goals.  It isn’t because I have magic powers or specialized knowledge that things get done or even the financial incentive to be paying me to join her.  What is truly happening is that she is with someone who she can talk to about her goals, her thoughts about how to get her jobs done and have someone there to make it fun.  The fact that I do organizing and small business administrative support work helps, but it is just the opportunity to team up that brings in that energy.  She usually follows up our sessions with an email telling me how her “Maria fix” is still lingering and that makes me feel great to know I’ve helped. 

While working with her on taking a look at what she already does do and knows, I gained some insight myself on how I should also be resisting the urge to think too much and simply work with I already do and know about my health.  In the beginning of our adjustments to all the new health-related symptoms (even when we’ve lived with illness for awhile), we have a sense of urgency in learning as much as we can about particular symptoms and how they will affect our lives.  Sometimes that urgency can get carried away and we tend to forget that our gut instincts have done an amazing job already in evaluating the ‘data’, yet we get too distracted to listen to what our intuition is telling us.

Without exact medical science and much public awareness, lupus is a pretty solitary journey.  We share our lives with others, but only we personally understand what lupus is about.  Even among a group of people with lupus, you will find a wide diversity in diagnosis, support network, symptoms, economic status, education, emotions, behaviors, goals and so forth.  The importance of having trust for our own judgments can sometimes be dismissed by family, friends, doctors and ourselves.  I know I seek out more and more information when trolling the blogs, bulletin boards, websites and social networking sites, convinced that I’ve missed something.  Eventually, I realize that I am missing something… my own instincts about what works for me and trusting what I already know.

I believe that I have learned the most from individuals who are just beginning their life with illness, mainly because I suspect that their use of intuition is most acute.  Since we haven’t accumulated the reams of paper on every topic yet, our need to understand what is happening still includes a sense of openness to learning about ourselves.  Every situation is different and talking with others who are jumping on board the “L” train offers me many options to do things better, easier, quicker and with more self-forgiveness —despite how I had already learned those lessons many times over.  So, why do I keep listening to the same old recommendations and encouragements if I already know I need to do them?  What makes me think that visiting a chronic guru, who tells me the same thing I read from a book, will change the fact that I’m not doing it?  Why does this client achieve so much from me helping her do what she really could do for herself?

If you look more closely, you will see that the many bloggers and writers out there are not cured nor have they achieved enlightenment nor sainthood from their struggles.  Indeed, they are doing just what we all are doing—the best they can, each and every day.  Yet, with all the name recognition and glitter, it is easy to assume that they are different than we are, better off than we are, stronger than we are, and so on.  We flock to them for information that we obviously are missing, otherwise we would be doing and feeling better about our illnesses, right?  What they offer really isn’t wisdom about living with illness, just as what I offer my clients isn’t rocket science.  What is really being offered is simply ‘opportunity’.

When we take in too much information or create too many options, we lose our way because our brains are wired to only be able to process a certain amount of information at a time.  That is why we are hearing how multi-tasking is actually less effective in getting jobs done well.  Sometimes, we need a ‘tour guide’ to get us around our own thoughts and that is all I do for clients. 

The opportunity to share in a dialogue of what is most pressing in our lives, like living with illness, is out there and it benefits us to occasionally invest in participating so that we can apply all that information we’re spending hours accumulating.  Maybe investing on one topic or one experience is all you need and that may just open the dam for more energy and inspiration.  You may share a similar thought through a “tweet” on Twitter or some mutual friends on Facebook.  One day you may be doing well with lupus and the next day you find yourself needing to vent to someone who ‘knows’.  The value in connecting with others, reading what others write and listening to others’ life experiences isn’t just to dwell on illness— it is to celebrate the rest of those parts that we are made of—one step or one day at a time.

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This is part one of a two part introduction to our current book discussion.  This month we are talking about Despite Lupus: How To Live Well With Lupus with the author Sara Gorman.  We encourage you to pick up the book , visit her website, learn more about her in our May post or read our review of her book. 

Part Two will be posted tomorrow that will have Sara’s introduction for the discussion group already available on the Shelfari.com book group under “MLWT Book Discussion Group”.

Nothing brings home the challenges of stiff, achy joints and limited mobility quite like the dampness of a good Oregon winter.  We’ve been fortunate here so far in not stepping into that season full boar yet, but we know it’s coming.

Today, awareness is upon those daily challenges for people living with osteoarthritis and all the other forms of arthritis as it applies to their experiences in the workplace. There are a number of bloggers (one fav is Rheumatoid Arthritis Guy  ) and other resources speaking on this topic, offering insight, tips, information and additional resources that we strongly recommend everyone read.  Even if you don’t have this leading cause of disability in the U.S. (yet), there is undoubtedly someone you know who does and may benefit from you understanding it better.

Two must view links today are:

The Arthritis Foundation website

Their World Arthritis Day page offers up some specifics about today’s event, what osteoarthritis is and the how it is reflected in the workplace.  they also offer some extensive resource links for more information.

World Arthritis Day website

    This is the main website for the event that includes all forms of arthritis and rheumatoid diseases as a whole in their efforts to support patients. Their theme today and for all of 2009 is described below directly from their website:

“This year’s ‘Let’s Work Together’ theme considers the challenges of work, be it paid employment, voluntary work or work at home supporting a family, and embraces people with rheumatic diseases, healthcare professionals and employers.”   (Source:  World Arthritis Day website) 

On their site, they also offer results from the 2009 survey that show:

1)  the need in furthering awareness building efforts to continue in the workforce to allow for continued, supported employment options;  and

2)  state and legislative backing to encourage more adaptable/flexible working environments 

The survey is still open and you are encouraged to participate – just follow the link on the page and give your voice to today’s event.

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Even though the spotlight is primarily on arthritis in the workplace, I want to put a shout out for a local PNW event to celebrate and benefit the young patients living with arthritis.

CARRA (Childhood Arthritis & Rheumatology Research Alliance) is holding their annual CARRA Costume Ball on Saturday, October 17^th  in Camas, WA.  This event includes food, music, dancing, games and more and is open to all ages.  The party will be held at Prune Hill Elementary, 1601 NW Tideland St. from 6-9pm.  Tickets are $25 per family and proceeds go to furthering research and support for our young ones who are often overlooked when we think about living with arthritis.  Visit their website for more information.

Wishing you all a more flexible and less painful day today – stay warm!