There is a month full of campaigns for lupus awareness~ I’ll try to make note of as many as I can.

What I would really like to do is encourage you to wear purple today and show not only your support in bringing awareness of this disease to others, but to give yourself acknowledgement that you work through your challenges with lupus every day…and that means something.

Some days are better than others and it would be wonderful to not have to face them like we do.  However, by taking a minute to realize just how much you handle and succeed in, despite these challenges,  is well worth a day of color.

Today, that color is purple~ find even the smallest bit of it and wear it proudly.

You’ve earned it!

What does this day mean for you?

For years, I have explored the new, and sometimes renewed, methods by which we try to make some sense or gain some control over our lives.  What I’ve learned over time and have expressed here constantly, is that each experience with lupus or other chronic conditions are uniquely our own.  Although there is a benefit to building a network or personal support community to help us weather the daily challenges, we are always on our own in trying to make our lives work for us personally.

When I have the opportunity to facilitate health-focused brainstorming and problem solving sessions for individuals and/or groups, the words “isolation”, “fear”, “uncertainty”, “frustration” and “pain” are the most frequent words I write on the board.  When I facilitate Wellness Discovery Sessions, those same words come up time and time again through images. No matter what the health challenge (and not necessarily limited to the Portland,OR area), there appears to be dark clouds hanging over each of us every day…and not just threatening rain.

Having worked with organizations and non-profits over many years, the mission statement is very important for those working within the organization itself and for those of us in the community who are considering supporting their efforts with our limited time, energy and money.  I always encourage careful consideration when donating anything to a collective group claiming to offer “support” for health or “wellness” needs.  The best way to determine their integrity is to carefully study what they say, do and who they team up with, as it all relates to their professed mission statement.  I have seen my share of “non-profits” come and go, that have focused less on service and more on marketing or “piggy-backing” on other people’s work.  They eventually fizzle due to revenue or lack of community response and leave those of us still needing health support high and dry.

So, how do these organizations or non-profits know what to offer the community they serve?  Social media is a great way to learn through lurking and paying attention to themes.  And, as we all know about social media, there are a lot of people out there giving opinions, medical advice, selling products, venting frustration, judging each other, or connecting with like-minded individuals all over the world.

Organizations and health-focused non-profits are only going to work financially if they ‘market’ themselves in a way that either seems to work for other organizations( similar events and topics) or by using the ‘lingo’ and themes as their ‘key words’ to get our attention. These keywords and themes are then used in their marketing materials to draw us in – as well as our wallet.

Now, I want to return to those keywords I pick up at most of my facilitations with individuals living with chronic health challenges such as lupus.

Isolation

Fear

Uncertainty

Frustration

Pain 

If organizations and non-profits are marketing wisely, they will use both these and the antonyms (opposite of these words) to get our attention.  But, are these relevant to us regarding what we truly need in support or are they simply expressions of the feelings that represent our unmet needs?  Do we want people to support us in feeling better or do we want people to offer us viable, relevant options to care for ourselves?

Initially, I thought about using the ‘first line of the story’ activity to create as a sort of collective affirmation on we want to make for 2012.  A type of working mission statement, if you will, that is broad enough to cover everyone’s experience in some way, but is still a statement that can help lead our support need requests toward building useful resources.  We hear calls to support research in finding a cure.  We hear about advocacy opportunities in supporting legislation.  We are always hearing from people asking for money to support their efforts. Those bases are covered and many are important for us to take part in for ANY health treatment progress to be made.  But, for you personally – what is your call for?

Maybe moving away from a collective activity and starting with individually exploring key words that catch our eye throughout the day is the first step.  What words support our sense of self-determination, rather than our need? Are those feelings and needs burdening us because we choose that or are we responding emotionally to ‘outside’ forces?  Or, just as valuable and necessary, are these needs and feelings truly relevant to us, waiting to be addressed? 

What would you want to see in a brochure?  What would you be interested in reading through the many social media platforms – Facebook, Twitter, Tumbler, Ning communities, and so forth? Do these keywords describe your life?  Are these keywords what you are looking for from an organization or non-profit?  Are you willing to support them in perpetuating these keywords or would you prefer to have them help you redefine them?

Just as a note, and an important one:  I hear a lot of positive things come out of facilitation, too.  I hear amazing strength, courage, self-determination, hope, joy, community, potential,…and so on.

That is the main reason I do facilitation~ what I learn from listening to the stories of others inspire me.  What comes from the process or dialogues during facilitation astounds me and motivates me to create as many opportunities to bring people together to brainstorm, problem solve and build something as possible.  Yet, strengths don’t imply ‘need’ and, although there are plenty of non-profits out there that offer services focusing on needs, usually the marketing focus is more on these ‘need-focused’  keywords that keep their mission statement (and their organization) operating.

I invite you to take a minute or two and join me in thinking about keywords that you would put into a personal mission statement.  Brochures and fancy websites aside, building on your own personal ‘marketing’ will make finding those non-profits and organizations that truly support you in your wellness much easier~ while offering you an individually stronger (and longer-lasting) impact on your own life.

Here are the three community requests and the responses I received – thank you to those of you contributing to the discussion!

Request #1: Some suggestions on how to respond to family/friends who question the inconsistencies of our symptoms (for example, “You were fine a half hour ago!”)

A few people recommended The Spoon Theory, a familiar tool using something tangible to reflect a measurement of how much energy it takes to get through a day.  Although not everyone with lupus experiences challenges with fatigue, using spoons (or I’ve also heard people use other things like tooth picks) is a good way to express loss that others can relate to.

On a similar note, I recently learned of a communication tool that a dear friend, and organizer for the Portland-area Fibromyalgia/CFS support group , Tamara uses to give her husband a signal for the day regarding how she’s feeling.  When her clear jar is full of the polished pieces of glass, she’s doing great.  As the day goes on, she removes pieces as needed and, without saying a word, he ‘sees’ where she is at a given time.  What makes this a wonderful way of communicating is that they both developed this language together and by taking out the need to exchange words taxes her less and strengthens their relationship more. Co-creating a communication tool that speaks clearly and compassionately is something maybe to ask your friends to take part in.

Of course, there is the standard communication tool of “I feel…” messages, as I was reminded by a graduate of the Living Well with Chronic Conditions workshop, Laurie.  These messages, with practice, help take some of the defensiveness out of a situation by focusing more on how we feel or the concerns that we have when something is said or done.  In the situation that prompted this question here, the member who sent me the email felt defensive immediately when her sister-in-law couldn’t understand what happened within a half hour that changed her energy levels.  She snapped back and wished that she had a better, and cleverer, response that wouldn’t have led to hurt feelings all around.  Here is an example of how a conversation might happen and how using these types of messages can make the same conversation go a little better for everyone:

Without an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “So, what are you saying? That I’m making it up? Thanks for the compassion…”

With an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “I feel like I need to defend myself when I can’t explain how much my body puts me through.  I really want to figure out a way of telling you how I feel so that we could understand each other better.”

The key here is that the MLWT member focuses on what she is feeling, thinking and wanting without using those dreaded “You” messages that feel great in spewing to others, but cause emotions to get away from us… leading to defensiveness towards everyone.  Whether the sister-in-law commits herself to actually help figure out a way to better communicate is out of the MLWT member’s hands.  First, and foremost, the MLWT member gets what is on her mind off her chest and maintains a sense of calm (managing stress) while coming up with an idea to ‘fix’ the situation (proactive and constructive). These messages may not feel very natural at first, but taking that extra minute to focus on taking care of you gives more opportunity for positive results than there would be otherwise. 

Finally, MLWT member, Janice, simply stated:  “Tell her to just smile and nod – people will never really understand what we’re going through.”  Good point, Janice.

Request #2:  Kitchen products that have good grips and are light weight

Here are some responses I received to this MLWT member request:

-OXO products

-Kitchen Kaboodle sometimes has great little tools, or any senior living source (Gladys)

-Arthritis Foundation website sometimes mentions products (Laurie)

Anyone else?

Request #3:  Any books that help mothers be supportive to their children who are struggling with chronic health challenges (preferably non-clinical)

I’m still compiling, but Universityof Michigan offers a great website that covers some really important points that you may be interested in.  It isn’t easy to find sources covering illnesses like lupus or fibromyalgia, but consider seeking out books and websites that cover areas like cancer (LOTS of books available).  Even terminal or hospice sources that discuss caretaking for communication tips. Of course, the National Lupus Foundation is always open to hearing your requests, offers topics like this in their webinars and has a book recommendation list  you may want to check out.

If you’re on Twitter and have some additional resource ideas, use #CIbook within your tweet and I’ll find it!  You are more than welcome to share them here, as well.

The Winter/Spring MLWT Musings enewsletter will be out in late February, so if you have any thing you want to put out there to the community members to help problem solve an issue, email me here and I’ll get it into the next edition.

I offer both in-person and online Discovery Sessions that focus on wellness – not just illness, but the overall concept of health as “…a state of complete physical, mental and social well-being.” (Straub, 2012)  If someone wants to look at their relationships, their work, their feelings about their health challenges, or simply wanting to open up to learning more about what is going on “inside”, the Discovery Sessions are a quick, easy and non-therapeutic (meaning they aren’t therapy) activity to tap into your intuition.

For PFAM, I did a session myself on addressing the theme on using images to ‘scrapbook’ my illness.  Below, you will see what you would do on an online Discovery Session with me.  The sessions only allow five minutes to put together the collage – that is important.  We want to tap into our intuition and choose images before we have a chance to block them out or think too much about them by bringing in our feelings, perceptions, concerns and so forth.  Every session begins with a prompt we come up with when talking before hand and, for mine today, I chose “How do I see my illness?”

Here’s what I came up with:

My notes that I took during the session:

“This image set offers me more image-reference rather than explicit photos, which made this session more reflective. Lots of blues, surprisingly more serene while doing it and images chosen imply it.

• Action refers to work, which is constant with C.I.
• Middle image is ripe tomatoes, I choose to represent setting seed.
• Smallest image of hospital bed acts as a constant reminder that floats above everything.
• Image showing invisible illness among visible social ties.
• Are those ruins or indications that over time I’ve been worn, but still here to be marveled at in terms of achievements?
• The colorful salad represents both nutrition, that I am what I eat, but also the ingredients I need to constantly choose to make my life the healthiest it can be.
• The images of the swirling circles, of course, represents my immune system that is involved with the work I must do. It interacts with the level of visibility I choose to have and the seeds I plant every day for myself and those around me.
• Notice the unintentional direction that seems to swirl towards the hospital bed, but is distracted from reaching it due to the other images it overlaps. Tells me I still can make a difference in my overall health direction.”

 (C.I.= chronic illness)

Again, these sessions aren’t therapy, even though they have therapeutic properties.  I am a wellness facilitator, which simply means I organize the setting and coordinate the process, but the participant – you – choose the image meanings, define the connections, and take from it what you want to use.  My role is in simply asking the questions without any expectations or judgment.  I supply the momentum to assist you in exploring what you want to learn from you yourself. Who better to answer your own questions?

I am offering these one to one-half hour online sessions for only $15 throughout December and January,  because I want anyone to have a chance to take part.  It is a wonderful, self-care opportunity to play and learn, without concerns of lacking ‘creativity’.  We didn’t worry about that when we made our first collage in grade school, so why stress out about it now that we are all grown up?  That need to explore is still within us, but we’ve had many years to build up our barriers and walls of fear.  If you have ever spent time with grandchildren or your own children and loved how carefree they are when creating, that is what these sessions can offer you, too.

This is the season for joy~ and online Discovery Sessions are just one more opportunity to create some for yourself (or a friend) who could use a little lightness in their day.

Building on the research I conducted on lupus peer-led support groups here in Oregon, I continued to interview, research, review content and take part in as many conversations I could with regards to what ‘support’ means to those of us living with invisible chronic conditions.  My job here from 2008 up to now has been to gather, organize, clarify and respond to what living with lupus and related chronic conditions involves for as many people as I could learn from locally and beyond.

It has been difficult for people to get an idea of what MLWT is about, mainly because it was still forming and relied heavily on community feedback.  The blog wasn’t a general platform designed to talk about my personal challenges, although there have been a few posts that did open up that door.  It was more of an opportunity offered to those here in Oregon and SW Washingtonto chime in regarding resources, support needs, experiences, challenges, and successes achieved in maintaining their lives in the face of illness.  Although few commented publicly on the blog, the emails and conversations we shared were valuable in learning more about many of you out there and what you’re looking for regarding finding support in living your kind of ‘well.’

However, as we all know, we can research, read and review until we’re blue in the face (or red in the eyes), but still not get anywhere until we put all of that stuff we learn into action.  I’ve written about this topic before here on the blog and this new phase for MLWT is to follow through with this important learning concept.  It is time to apply what I do know and step into the ring of supportive service.  I will maintain a mission statement, because I believe them to be very helpful in staying on track with where I’m going and give some assurance to those I work with about where my commitment lies.

My revised Mission Statement is:

“My mission is to inspire individuals living with ‘invisible’ chronic illnesses by facilitating support opportunities that reflect their wellness potential here in Oregon, SW Washington and beyond,  focusing less on their disease and more on  their own intuition towards designing the lives they seek.”

The way I translate the MLWT mission is through two distinct service roles.  These roles are as a Wellness Facilitator and as a Wellness Doula.

As a Wellness Facilitator, I focus primarily in creating momentum through communication.  I assist in the process to strengthen wellness plans that will reinforce personal chronic disease self-management.  My role is to contribute structure in a process that will  encourage participants to explore their possibilities, discover  their own untapped potential and to assist in creating objectives for themselves.  I work in health education and training, wellness and health-related support group settings, as well as directly offer individual and group work.  I also collaborate with agencies, health-focused organizations or foundations, and local wellness service professionals.

As a Wellness Doula, my role is to act as a your partner in a more hands-on way to bridge between your health and wellness education source (physician or medical provider, counselor, therapist, life or health coach, etc.) and you.  Although I still facilitate your process in designing your self-care needs, there are times when a little extra support is needed.  As it is with a traditional doula who assists a woman in preparing, experiencing and adjusting to the new life she brings into the world,  I support you during the pre-diagnosis, diagnosis and the on-going adjustments that often come from living with a chronic condition.  I provide non-medical,  as-needed individualized support helping you define and succeed in your wellness goals by making them relevant to your life as a whole.  The focus is on you rather than simply on your health challenges.

I’ll cover these in more depth in the next few days and it will be placed on my website as well, as we go through this transition.  For now, you are more than welcome to ask me questions in the comments section about any of these changes I’ve mentioned or you can always email them to me at any time.

Well wishes to you all~ take good care of yourselves,

Maria

One of the many things I’ve learned about the fibro community is that pain is a strong motivator.  With lupus, pain is sometimes present or may be more present in our days than we would like it to be, but not one of the key symptoms associated with our illness.  When someone lives with pain, it affects and changes us to seek out answers, information, resources, or alternatives at a level that we may not be naturally inclined to act.  As someone living with lupus and looking just fine, it is easy for me to decide not to talk about my health.  I can blend in without too much effort, keeping the internal chaos as invisible to myself as it is to the person standing in front of me.  However, I started out with a great deal of pain, before I knew that lupus was ravaging my kidneys, and I know that I showed my pain in the way I attempted to walk, reach, sit, smile…live.

I have been granted an opportunity to meet with many local people and have become part of the strong Fibro community here in the Portland Metro area.  If you are interested in meeting some of them, many are members of their Ning community that I have listed down in the right margin here under “MLWT Networks.”  I receive emails from locals living with fibro (as well as worldwide) on a regular basis, more so than from people living with lupus.  They speak about what they are looking for, what they are doing and how they are thriving in spite of their constant pain.  Many are open about asking for help, even if it is a difficult thing to accept at times.  They welcome visitors to their groups in order to ease the discomfort a new environment can create for many of us.  The emotional wall seems much more flexible for these individuals and, I suspect, their life with pain moves them to keep connected to something or someone with hopes to mute their body’s hurtful signals to any degree possible.

Although my mother lives with, what she has been told by her doctor, “secondary fibromyalgia”, I still don’t ‘get it’ and I know I truly won’t ever fully understand what she goes through.  I do, however, want to learn more (and hear more) about as many fibromyalgia experiences as possible, because I know I will be able to better appreciate the information I receive coming from the ‘trenches’ more than I will from a research article or medical/pharmaceutical presentation.  I want to be here for my mom in a way that will actually acknowledge her unique experience and offer her the support that she needs, when she needs it.

To honor those many people living with fibro that I have met through MLWT, I will be hosting two book discussions in a row that focus on living with Fibromyalgia.  The first book is FibroWHYalgia, by Sue Ingebretson, and our discussion on Shelfari.com will begin October 1st.  To kick things off, Sue has offered a free, signed copy for the lucky winner.  Even if you don’t get around to picking up a copy of the book right now, you can still join in on the discussion and we encourage you to do so.  It’s a chance to have a conversation that is guided by the topics covered in the book and an opportunity to perhaps learn about additional resources that may be of help in your own fibro experience.

Here’s how you can get the FREE copy of Sue’s book for the discussion:

• The contest will run from today September 15th until 11:59 PM Pacific time, Friday, September 23rd.
• The winner will be selected in a random drawing on September 24th. I want to keep this give-a-way free of strings requiring you to do anything to win.  However, since this is for our MLWT Book Discussion group, you will need to register a free account with Shelfari.com.  It is a great place to meet others reading the books you are and MLWT isn’t the only group.  Authors are also beginning to sponsor their own discussions, so it is worth the effort and a great way to keep up during the winter reading months.
• I would also like to add your email addresses to my new seasonal enewsletters (The MLWT Muse) that highlight wellness updates and resources to know more about, both local and outside ofOregon.
• I will contact the winner via email on September 24th, and they will have 48 hours to reply in order to claim their prize. (So be sure your email address is correct!) After 48 hours I will move on to another winner.

To enter this give-a-way:

1. Sign up for the MLWT Mailing list (directly to your right on the MLWT website) and leave a comment below letting me know you’re signed up.  Then,
2. Sign up for the MLWT Book Discussion Group on Shelfari.com .
3. If you are already registered for either or both of these, just leave a note in the comments here to enter your name!

Once the winner is chosen and has claimed their prize, Sue herself will contact them by email with her congratulations and get their mailing address for the prize copy.  The winner should receive it in time before the MLWT discussion really picks up.

Best wishes to you all for the win and I’m looking forward to the upcoming discussion!

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

To learn more about Sue and her book, you can find her on Twitter (@SueInge), her Facebook fanpage , and her book’s website www.FibroWHYalgia.com .  She is also an MLWT Guest writer and you can enter her name in the search field on my website to bring up posts that she has contributed so far.

The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

For many of us living with chronic health challenges, we spend a lot of time in elevators. 

On good days, we try the stairs.  That time spent in elevators, however, can reflect our lives as a perfect metaphor for the “ups” and “downs” of where our emotional states are during our time in transit, between going to and returning from doctor appointments.  And, what used to be a more private space to collect our thoughts either way, we are now acutely aware that “someone” is always watching.

So, how have those elevator rides changed for us?  Are they more frequent? More, or less, emotionally difficult? Still solo, or now include fellow travelers by our side?  Standing freely versus now requiring a means of physical support?  Are the elevators the same, or have we moved on to different ones with new flyers to read, buttons to figure out and new eyes upon us through the security camera lens?

I’ve noticed throughout my life that my rides in elevators have always challenged me to decide to acknowledge someone else sharing the journey.  The quick eye contact and swift, polite smile followed by screaming body language that states clearly “Leave me alone.”  Rarely has it been personal towards my co-rider, although there have been moments.  Primarily, it has been more about me going inward with my thoughts in order to prepare for the final destination.  To the job interview.  To the doctor appointment.  To the lawyer’s office.  To my car in the parking garage.  I’m focusing on where I’m headed rather than who is heading there with me, or at least tagging along for part of the ride.  That’s how I handle a lot of the changes, stressors or situations in my life as a whole.

I have used those rides, when alone in the elevator, to practice my speech.  Go over my conversation, recall the questions for my doctor or to desperately remember which floor I parked on.  It used to be weird being in a mirrored elevator.  Now, that’s nothing compared to how embarrassing it is when I catch myself in mid-sentence during my monologue, realizing that the Security employee is probably laughing in hysterics.

The speed, accommodations, flyers, fellow travelers or destinations haven’t really changed too much for me over time, but the quality of the time spent in my little ‘think tank’ has.  If I’m stressed and truly need that time to prepare or process, I’ll pull out my headset and pretend I’m talking on my cell phone.  Yeah, I do that, and I’ll openly admit to it.  I need to talk things out, but preferably with myself first rather than immediately sharing it with my support network…my fellow riders.

If I leave things too long in my head, I not only lose my train of thought—I lose my perspective.  I need check-ins between my heart, intuition and my brain.  I need to have a sense that I’ve squared things, before I openly share it with someone on the ‘outside.’

If we ever run across each other in an elevator some day, be sure to say hello and don’t let me close off too soon.  If I do, though, don’t take it personally.  Once I get things worked through in my own way, I’ll be happy to share the ride with you~

~ wherever we are both headed.

Darese (on right) and I, PNW Chapter LFA Portland Lupus Walk 2008

Sometimes, many months or years pass before I get around to checking in on some of my friends.

One friend, in particular, would take what seemed to be forever to get back to my emails or phone calls, which would frustrate me since her lupus was of the more aggressive type.  When she did get back to me, she would tell me of stories regarding emergency hospitalizations and troubles during dialysis.  I would chastise her for not letting me know that things had been so difficult and she would assure me that when things were really bad, she would call.

Usually, the majority of the catching up between us would be more about the new love in her life, her new projects through her church and the friends she was making at various health-related appointments.  It was always good to hear this stuff, because I could always see her face lighting up and her gentle smile as she told it to me in person.  On the phone, her voice reflected that same gentleness and I hung onto every chuckle from her.  I wanted so much for her to be happy, as I watched the lupus ravage her for years.

My absence from here over the last few months was in direct result at the shock I experienced when her mother called me in early July to say that Darese had passed away in June.  My reaction was mixed at the news and the months that followed had me in a funk that varied between absolute sadness for her, anger towards her for not letting me know what was going on, guilt for being angry with her, regret for not being there for her and so on.  Then, the wake up call forcing me to remember that lupus isn’t something to take lightly, which shut me down altogether.

I could not bring myself to write about her passing until now.  I think I’ve found some balance and I know that she would be scolding me, if she were here, for being such a baby for this long.  There was so much about her that I hold dear to my heart and it is about time I share it.

I met her when I finally decided to check out a lupus support group, about a year after my diagnosis.  She sat there, the only African American gal and under the age of 45 years.  The facilitator was younger, but busy talking with everyone there.  So, I took the seat next to Darese, intent on keeping to myself as I forced my way through the meeting.  We used to laugh later  about how she had planned to do the same, but neither of us could help connecting to each other.  We were peas in a pod.

The stories she shared with me during our decade-long friendship were sincere and inspiring.  The jokes, complaints, her rantings and “some day” dreams made her so unbelievably human.  The miscommunications and misunderstandings between us made our friendship worth fighting for.  Even though there was often too much silence in the last two years between us, as life’s chaos took hold of our days, we always knew each other was out there.  At least I can say for certain that her being on this planet with me — somewhere — meant everything to me.  I want to believe that she perhaps protected me towards the end.  She probably knew I wouldn’t be able to watch her go.  She was right, as usual.

Sharing this with you brings back all the sadness I have suppressed since that phone call and I see that I still need time to accept that she’s gone.  There are people we come across in our paths here who connect with us to the core.  We may know it emotionally, physically, spiritually or mentally.  Sometimes, we can’t choose the people who connect with us that deeply and their presence may serve as more of a reminder of who we need to become, rather than a celebration of who we are already.

Darese and I didn’t choose each other, but I choose to keep her close now, even though she has passed on ahead of me.   We celebrated, inspired, challenged and were very grateful to be there for each other.  Her place in my heart now reminds me to not let time go by too long before checking in on the other special people in my life.

Silence isn’t always golden and the sound of it can be deafening for our hearts, if we’re not careful to keep them connected.