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!

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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.

Even if you don’t live on the coast, what a great reason to go and escape this heat!

September 10-15, 2011

 Arthritis Road Show 

Serving the communities along the Oregon Coast

The Arthritis Foundation is bringing free resources to the communities of theOregonCoast!  Hear from rheumatology specialists, orthopedic surgeons, and get a free osteoporosis screening.

Program Dates and Locations

Saturday, 9/10           Astoria – Holiday Inn Express

Sunday, 9/11             Tillamook – Tillamook Bay Community College

Monday, 9/12             Newport – Oregon Coast Aquarium

Tuesday, 9/13            Yachats – Adobe Resort

Wednesday, 9/14       North Bend – North Bend Community Center

Thursday, 9/15           Gold Beach – Curry Public Library

Program Schedule:

6:00 pm  -  Registration & Resources

6:30 pm  -  Presentations and Q&A sessions

7:30 pm  -  Program Concludes

To RSVP, Please Contact:

Cynthia Bishop, OregonPrograms Coordinator

Phone:  (503) 245-5695  Toll Free:  1 (888) 845-5695

Email:  CBishop@arthritis.org

Sponsored by:

Pfizer

Amgen

rebound Orthopedics & Neurosurgery

Janssen

Abbott

Arthritis Foundation

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.

Okay, I am amazed that we are already in mid-May.  Thanks to Leslie at  Getting Closer To Myself   for reminding me to get going on calls for submissions.  I will be hosting the next Patients For A Moment (or PFAM) blog carnival and, even though it snuck up on me, I am really eager to hear from all of you.  Just as a reminder, this is open to anyone living with chronic illness and not just lupus. 

I’ve been busy trying to get some of my goals and inspirations organized into actual plans.  Naturally, I’m overdoing it and I’ve been flaring again after years of what appeared to be remission…at least, as long as I kept up my meds.  I have grown used to not having lupus be a real factor in standing in my way of doing what I want, though, and the reappearance of familiar symptoms have certainly forced me to recognize the importance of pacing myself. 

I have over-committed, but I am unwilling to drop anything from my list because this taste of regaining some control in how my days will go is delicious.  I may have to negotiate a bit more, but I’m still going to aim for those goals.  

Since I dawdled at announcing this, I’m going to keep this PFAM’s theme short and sweet:

“What are your wishes and goals for the 2011 summer months that you are unwilling to let lupus (or other health challenges) stand in your way of reaching?”

Just as I am re-learning to do, I imagine there will be some negotiating you’ll have to do as well.  If you are making any modifications in your planning, be sure to talk a little about them, too.  Not only are we looking for inspiration in ideas to pursure, but it’s great to have some new tips on how to make our ideas come together with our health in mind.

To submit, e-mail me your post to maria@mylifeworkstoday.com by midnight on May 23rd  with “PFAM” in the subject line.  Be sure to also include:

• Your name as you would like it to appear
• Your blog’s name
• Your post’s title
• Your post’s URL 

Heck, if you want, I’ll even throw in some pics if you have them.  I’m hoping that what we gather up in this next PFAM might inspire everyone to have one, great summer. 

Looking forward to your submissions!  

I am pleased to introduce author and pain archeologist, Sue Ingebretson, as our guest for today.  You may already know her from her website Rebuilding Wellness and/or from her book, FibroWHYalgia . You can also find her on Twitter and Facebook.  She lives with Fibromyalgia and works diligently in creating self-care resources to address the many challenges (and oppportunities) living with fibro can present.

With today being a big day in building awareness for Fibromyalgia, I asked her for her thoughts on a pet peeve of mine, where we in the health and wellness arenas can sometimes fall into focusing so much on managing illness that we can actually derail building wellness.  Please welcome Sue and learn a little more about what she has to say about being your own best coach in pursuing healthful possibilities.

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How Do YOU Manage Your Chronic Condition?

As a member of the FibroFix Team, I helped to create a free eBook that can be downloaded here. In this book, The Top 5 Health Mistakes YOU May Be Making Right Now! I listed one of the mistakes as this:

“Managing your illness rather than your wellness”

Do you see this as a problem for you?

In a nutshell, I pointed out that managers – or coaches — have a great effect on their teams based on their words. Most coaches uses inspirational language – phrases such as: See the finish line in your mind as you move forward. 

That makes sense, doesn’t it? Encouragements from others can really help us stay on track. It sharpens our focus and bolsters our motivation to reach our goals.  But what if the language from our coaches is negative? What if a coach said this to a member of his or her team: Make sure you don’t trip and fall like you did the last time.

How do you think a phrase like that would damage a person’s motivation, or worse, their self-worth?

The real problem is that we are often our own worst “coaches or managers” when it comes to life planning and setting positive goals for ourselves. A lifetime of experiences has taught us to think more negatively than positively. Many call this, “just being realistic.”

I don’t agree. Is it “realistic” to set intentions that may not ever come true? I know a lot of chronically ill people in my local area support group who think this way. They don’t commit to events or meetings because they might have a flare that day. They retrofit their homes, cars, workplaces with accommodations for future disability issues. They take pharmaceuticals that are intended for “the bad times” now so that if a crisis hits, they’re ready.

Is that realistic or pessimistic?

What if you turned that thinking around? Consider PLANNING for success and improved health. Coach yourself into positive thoughts such as:

My body is growing stronger every day

I see great improvement in my energy levels as I take care of myself 

Putting my self care needs FIRST, helps me to prioritize everything else

When it comes to self care and keeping a positive attitude, I’m often asked which comes first. The best thing is that it doesn’t matter! A positive attitude helps to motivate you to take care of yourself and taking care of yourself helps to foster a positive attitude. In all scenarios — YOU win! 

Try these basic and simple self care methods: 

• Move the body in a healthy way every day. Whether it’s walking, swimming, gardening, dancing, etc., moving your body each and every day is vital. Move within your own capabilities respecting any personal limited mobility issues. 

• Drink plenty of pure, clean water (that doesn’t mean water from the tap). 

• Include plenty of nutrient-dense, fresh veggies in your meals every day. 



• Breathe deeply – taking deep belly breaths – at any sign of negativity, anxiety, or worry.

• Create a bed-time routine of turning off TV’s, radios, etc. and write in a gratitude journal, read a good book, or take a warm bath. Whatever your routine is, make sure you stick to it and prepare yourself (mind and body) for a night of restful and restorative sleep. 



Applying just a few, simple self care activities into your daily life can have profound benefits! 

If you’re in the Midwest, The Fibromyalgia Coalition offers an amazing conference each year in May. Click on the 2011 Conference link for more details.  If you’d like an in-depth and personal educational series about healing from chronic illness (not just for those with fibro) that you can participate in from your own home, view the details of the FibroFix System here.

There’s always more to learn, so tune in to educational opportunities that meet your needs. Set your intentions for a positive and healthy future!

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Sue’s book,  FibroWHYalgia will be our first MLWT Book group pick beginning this Fall.  Here is a little more about it: 

When Susan Ingebretson found her health spiraling out of control, she wanted to know why. Her tenacious research into the causes of chronic illness led her through a maze of traditional and nontraditional healing methods. Ingebretson eventually connected the dots and found wellness. FibroWHYalgia is a half diary/half tutorial guide that exposes the facts, fibs, and fairytales of failing health and offers practical solutions. Included are detailed descriptions for making nutritional, fitness, and stress-relieving lifestyle changes.

Susan Ingebretson invites anyone with chronic illness to come down from the spectator seats and participate in restored health.

More about Sue~ 

Ingebretson was featured in the March 2011 issue of FIRST for Women magazine and made several guest appearances on the nationally syndicated health TV program, Know the Cause! Her writing has appeared in the National Fibromyalgia Association (NFA) print magazine, FibromyalgiaAWARE, and the Fibromyalgia Coalition International’s magazine, Fibromyalgia Alternative News. Ingebretson is a contributing author to, The Gratitude Book Project: Celebrating 365 Days of Gratitude and the eBook Fibromyalgia Insider Secrets: Top 12 Experts. She has also authored many books for Playbooks, Inc., a children’s publisher of instructional classroom books. Her book, Fabulous Food Detectives, teaches students to read food labels and discern the difference between whole and packaged foods. 

Ingebretson posts news and encouragements geared to promote positive lifestyle changes and healthy living.

If you are living with lupus, or know someone who is, you will undoubtedly come across references to it live or via internet.  Over the last three years of MLWT, I have watched the presence of lupus grow to new heights and am grateful to the powerful impact the internet has given to so many voices.  Lupus is often considered an “invisible illness” due to its inconsistent symptoms, lack of clear diagnostic protocol and the diversity among those it touches.  Lupus and its primary symptoms of fatigue and roller coaster health affects leave much to be desired in a marketing perspective, but the explosion of patients through blogs, health networks, Facebook and Twitter make it clear that Lupus is no longer the invisible threat it once was.

Although I received a number of ‘hits’ on my post regarding Oregonians and their invisibility pertaining to lupus , you’ll notice the silence in the comments…again.  As the world opens up today on what living with lupus looks like, feels like, and how it challenges us, I was hoping to see more people from my own state join in.  Perhaps you are.  A recent comment from a person via Twitter, however, made me realize that there is a population of lupus patients that we won’t hear from (maybe all here in Oregon?).  Does that make their experience less important in learning about lupus, simply because they aren’t broadcasting them?  I don’t believe so. 

The comment I’m referring to was in response to my ‘tweet’ “So, what are you planning for Lupus Awareness Month?” I received an answer that hit the nail on the head and I think it represents a number of people living with lupus (or other illnesses) that are chronic and less visible to others.  The person said that she was hoping to be able to forget about it as much as possible.  Although she recognized that to others it may “sound awful…,” I think her comment is a solid and valid point. 

According to Dictionary.com , the definition for awareness identifies it as an adjective rather than a verb.  Yet, health advocacy has forced this measly description into action and its momentum grows every year.  Supposedly based on a variant of the Old English gewaer, meaning ‘watchful’, the modern definition has been translated to meaning conscious or aware of danger; alert; to be fearful, wary, or cautious.

Anyone else feeling a little uneasy about this? 

The comment my Twitter friend made, I think, reflects a key point in living with lupus:  we seem to be in a constant state of defense.  Physically, medically, emotionally, socially, mentally, etc.  It is no coincidence that facing health challenges often are referred to in somewhat military terms, as if we need to rally the troops in order to get by.  In our case, though, our troops are already out of control.  Does participating in awareness campaigns signal our minds and bodies to fight even more diligently, when what many of us really want is a break from the chaos?  It sounded like my Twitter friend does and, in my opinion, we are all due for a well-deserved one. 

I’m going to counter the movement today, not out of rebellion, but out of respect to those who are probably reading this anyway…others living with lupus.  As the world hears from many out there up for the battle to be heard, I send a wish, rather than a battle cry, for ease and peace today to those of us who are simply wore out.  Today, put aside the banners and colors, and wear the color that makes you happy.  Seek inward to learn something new about yourself, rather than focus on the persistent pain and fatigue of lupus that fill the stories being shared.  Be aware that, although lupus is a part of who you are in many ways, there is no need to be fearful, because there is a lot more to who you are than your illness.  By finding ways to liberate the other parts of you, you will teach others what lupus means to you.

No apologies are necessary if participating in World Lupus Day or Lupus Awareness Month doesn’t motivate the warrior in you~ you’re already at war and I know that.  Be good to yourself and put down the sword~ spend today in peace.

I have had the pleasure of meeting and collaborating with some amazing people, including the crew at the Spondylitis Association of America.

Although there isn’t an official chapter of the Spondylitis Association of America (SAA) here in Oregon, they do have a strong website and use social media (especially Twitter and Facebook) to connect with patients all over the country.  There is a support group listed on their website for our area, but if you can’t make it to Vancouver, WA where they are held, I encourage you to check out their website for all of their great resources and supportive options.

I hadn’t heard of AS until a friend of mine was finally diagnosed.  For years, she would talk about her symptoms and levels of pain that was just heart-breaking to listen to, leaving me helpless in giving her answers to the questions she so desperately sought from me.  Since then, I have learned a great deal from directly and through the SAA website.  My friend has also taken advantage of all they offer, has been able to develop better relationships with new doctors, continues to work full-time and is considering taking part in their PEER Mentor program as a “Mentee”.  She’s been officially diagnosed with AS for five years now and has come a long way, in spite of her continuing levels of constant pain.  The sense in knowing more about what is going on in her body and learning key tools in managing her symptoms have brought her to a stronger sense of personal determination and, well, hope.  That is the theme for the SAA and this celebration today. 

The words Ankylosing (“fusion”) and Spondylitis (“inflammation”) may be difficult to pronounce for some and you will often hear people refer to this disease as “Spondylitis” or just ”AS”. Straight from their website, the SAA describes AS as: 

“Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.” 

Other common symptoms include pain, stiffness and inflammation.  Organs may also be affected such as the lungs or eyes, and, rarely, even the heart.  You can find more information about how AS may affect a person by visiting their complications link .  There is no known cure (yet), but options to aid in managing pain and inflammation are available.  

Take time to read the SAA website and check in on the Hope and Apples stories  website (and take part on the chat via Twitter #worldasdaychat), you will recognize many tales of challenge and encouragement.  Lupus and AS, or other illnesses, have more in common than different.  There is one particular entry from Christina McDaniel, who shares her story, video and blog links, as well as some beautiful artwork.  I think many of us can relate to her image, even though we may not live with AS.  There are many voices to be heard today, however, so be sure to visit them all. 

Learn more about these inspiring individuals and, if your life is also touched by AS, definitely consider the SAA as a valuable resource.

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.

Just a quick note~ 

Today begins our April MLWT book group discussion on Shelfari.com   and we are featuring Carla Ulbrich’s  How Can You NOT Laugh At A Time Like This? .  In fact, Carla has joined in on Shelfari and will take part in the discussion as well! 

I missed out today, but I’ll be starting things up tomorrow with some reading and a few notes to get things going.  If you haven’t read it, or don’t have it yet, remember that these discussion are on-going and you can join in at any time.

Hope to see you all there~ I suspect there will be some chuckles to be shared.

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What do I look for in a doctor? To answer the call in today’s theme,  I reflected back on some of those memorable experiences when talking to my doctor of the moment felt more like dealing with a character from Sesame Street® .  Or, in this situation, I think I’ll refer to it as, “ Sez Me ” Street.

You have Bert and Ernie     

These are the doctor-intern team where listening them talk back and forth to each other makes you wonder which one is going to get that Rubber Duckie put where the sun don’t shine — first.  They banter, speak each other’s language, drift onto tangents that completely go off the topic and treat me like one of the pigeons sitting on the window sill outside their window of knowledge. 

You have Benny the Rabbit 

“My name is Bennie, not Bunny!”  The cantankerous doctor who gets all bent out of shape if you mispronounce a medication or mention something you’ve come across online that made you wonder if it could be associated with symptoms you’d been having lately.  “It’s Ray-NODES, with a long “O” and not Ray-NODS.”  Sheesh, I was only trying to be helpful. 

Of course, there is Oscar, the Grouch 

Do I really need to clarify this one?  I mean, who HASN’T  met this dude? 

And then, there’s Elmo

…who spends too much time making light of my situation, symptoms, challenges, pain, fears and so on.  I don’t care how much you giggle or animate your voice, talk about some other patient who did nothing but complain, or offer up clever come backs that you’ve bestowed on some other poor soul.  Your levity without giving me something I can truly use won’t make me feel like dancing and I’m not going to tickle you with a smile to make you feel better.  Right at this moment, it’s all about me, Bub, and my name isn’t Mrs. Noodle!  I have a tendency to rely a bit too much on self-deprecating humor and I really don’t need you joining in, too. 

Who could forget Big Bird? 

As it is in the Wild Kingdom, most of the male birds get the beautiful plumage so they can dance around and get all the attention.  Top that off with a bird who acts flighty, forgetful, or surprised by any new symptoms and that can really get my feathers ruffled quickly. Or maybe it is a doctor who is way too busy fluffing or puffing up and not really listening to what I’m saying.  When I’ve finally hit my limit with these birds,  I’ve been known to give them  “The Bird” right back. 

Usually my favorite character on the show, but not in this scenario, is The Count 

The doctor who looks at the labs and counts “…1…2…3…ah,ah,ah” when reading off those stupid numbers that imply nothing is really wrong with me.  This doctor assures me that what I’m feeling can’t be Lupus, because my blood work doesn’t back it up.  When pushed, this doc will tell me to go in for more lab work to test things again, if that will make me “feel better.”  What I wouldn’t give to suck his blood and mock him while I’m doing it.

Okay, so enough with the venting.  As it is with the real Sesame Street®  show, there is always something to learn no matter what the topic, character or situation you find yourself dealing with.  What would be that kernel of truth that I can close this tirade here with in order to make everything sunny again? 

In this neighborhood, where ‘Sez Me’ Street is located, there are plenty of opportunities to cooperate, negotiate, communicate and educate with a lot of different characters.  We may not always get along.  We learn new languages and concepts, while offered many chances to practice it all every day.  We may not see eye-to-eye or feel like joining in on all the chaos.

However, the fundamental point in being a part of this neighborhood is that everyone, no matter who you are or what role you play, has a right to their feelings.

As a patient, I can get caught up in burying my feelings and needs in order to placate the doctor role or character.  I need to better embrace my inner child who sees myself as important and believes that I have the right to say what I have to say.  Remember that feeling when you were young and you discovered something SO wonderful or felt something SO awful that you couldn’t wait to share it with anyone within ear shot?  That impulse — that very need to communicate — deserves to be nurtured within all of us.  That is my personal kernel of truth that I want to contribute to this discussion today.  When looking for and choosing the doctor I work with, I have to feel invited to communicate.  Whether they openly ask me to or simply sit and listen to what I have to say, that door to share my experience HAS to be present.  Otherwise, they just don’t belong on my team.

One of the first characters on the show is probably how I like to see myself.  He is a voice of reason and wit trying to explain why something is important, even though those around him may not agree.  He’s the one with the hysterical arm movements, flapping them about shouting when he gets overly excited.  The one that many go to when things get confusing and, despite what challenges he may be facing, is still expected to be the strong one all the time.  The one with a crucial need for organization and coordination, so that he feels things run smoothly. The one who recognizes that he is different, speaks of it openly and sings to himself when he is down.  The one who may not always feel in the right place with those around him, but assures himself and those who sympathize, that it is okay to be different.  I, of course, am referring to Kermit, the Frog. 

It “…isn’t easy being green,”  dealing with some unsavory characters — or to live with a chronic illness.  Yet, it is an adventure worth taking, plenty of smiles and laughter to be shared and lots of friends to meet along the way.  If you get stuck with the way things are going with your doctor, tune in to watch Sesame Street again, like I do.  It’s a whole new experience when keeping this perspective, offers some great basic pointers in working with different characters (doctors)… and is still a lot of fun to watch, too.