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.

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.

“You grow up the day you have your first real laugh at yourself.” – Ethel Barrymore

In April, the MLWT book discussion group on Shelfari.com hosted Carla Ulbrich’s  book  How Can You NOT Laugh At A Time Like This? (Tell Me Press, 2011), where Carla herself joined in.  I was drawn to this book simply because I strongly believe in the value of humor as a healing force.  Anyone out there offering me an off-beat way of looking at life with a chronic health condition is numero uno on my list. 

This month was Lupus Awareness Month and in the past I’ve usually jumped on the band wagon to promote the services, programs, websites and blogs that I think are beneficial for those of us out here living it day in and day out.  However, a strange thing happened on the way to my blog this month, … 

I know I’m a coordinator for a network aimed at linking people, service programs with information about lupus, but I just couldn’t muster up the motivation this year.  I really wanted to celebrate us as whole individuals and find the lighter side to life with lupus, but I have fallen flat in the past when I’ve offered opportunities in having some fun with the lupus trials and tribulations during a time when everyone truly wants to take things more seriously.  I know we struggle and want to be heard, but I really had a hard time with giving lupus the spotlight.  I wasn’t alone, either.  After writing (and working) for lupus advocacy and awareness for the last three years straight, I find myself with many other veteran health bloggers who are expressing a need to regain some perspective. 

I credit Carla and her book for my resistance to give lupus too much air time.  Her book puts living with lupus right into our own laps. This mirrors my shift in what I do here and I heard what she had to say loud and clear.  Many books out there speak about the challenges faced when seeking out quality care or figuring out how to deal with strange symptoms.  However, these books usually appeal to the readers with a sympathic undertone as if we’re at the mercy of our health.  I didn’t get that from Carla, even though I am certain that she is a very caring individual.  She connected with me through irony and that was refreshing.  I tend to deal with personal stress in a more problem-focused, instrumental way initially.  I prefer to deal with the lupus first and not reflect on how I respond emotionally to it. 

Rather than being a how-to book on surviving lupus, Carla’s book focuses on weighing the necessary evils of life with a chronic illness.  Yes, medications aren’t the wonderful panacea Big Pharma would like you to think they are, but treatment options have come a long way in offering us something to consider in order to gain some balance.  Yes, eating more healthy and being very conscious of what we put into our bodies is important, but it isn’t easy and will take a lot of work that will be worth it in the long run.  Yes, life with a chronic illness is crappy, but to continue to carry that perspective in your heart and mind every day will take its toll on you in more ways than a black cloud over your head.  It may mean your health will only get worse. 

She writes about the no-nonsense stuff we all experience with any health challenge.  Personal choices in nutrition, medical care and treatments, finances and work, relationships with others and ourselves, the value in educating ourselves with options and being responsible when making decisions.  And, underneath it all, Carla delivers her thoughts not as a know-it-all or health guru, but as a gal you love to have with you on a girls-night-out.  You know, that tone or feeling of being a little rebellious when you’re out with your friends looking for some fun, while needing to connect with the people you trust to divulge the ugliness life can bring into your life?  When you can announce that sweat pants are your favorite thing to wear lately and then mention you’re frustration in having to admit it to yourself, only to find that your friends are nodding their heads in unison. 

I’m grateful to Carla for dropping by and taking part in the book discussion.  I’m even more grateful to her for offering me a book that I can return to over and over to read when a girls-night-out isn’t in the energy cards for me at the moment.  She backs up her points with research that is easily traceable and from quality sources.  She takes the temptation to focus on being victimized by the disease and reminds us to re-focus on being our own best friend.  She points out that this world is full of people who either mean well or just won’t get it, then she follows up with some good tips and recommendations to do for yourself that will leave those people standing in your dust.  We can’t do much to change others, but we can do a lot to change the way we choose to take care of ourselves. 

Her book’s title is perfect and she writes about lupus in the truest sense of irony:

By definition, irony means using words that communicate the opposite of a literal meaning.  In her book, Carla writes about lupus as a hellish, unfair and isolating experience and then offers us her perspective where she suggests that living with it can actually be funny, victim-free and an opportunity to appreciate the valuable relationships in your life. 

Beginning with the one you have with yourself.  Let go of some of that pressure from your own emotional build up with a laugh and allow yourself to recognize how ridiculous some of your challenges are for you.

 Then, get busy.

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You can also find Carla online at Carlau.com and The Singing Patient.com , as well as Facebook .

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.

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.

My goal for the latest library excursion was to pick up references to begin Fall prep on MLWT Target Practices, some new classes and to catch up on writing those over-due articles.  What I ended up leaving with was a book, found by accident, and an absolute treasure that I want to share with you today. 

Reading and writing daily about life with illness can sometimes be, well, depressing and too close to home.  Yet, I struggle with reading fiction while the deadlines, emails from clients and project collaborations taunt me from my desk.  Reality, in many forms, just crashes into any story where I’m trying to lose myself.  You would think that the last book I would choose when trying to escape would be one about illness.  Perhaps you have more sense than I, because that is exactly what I ended up doing.  I am so glad I had this lapse in ‘better’ judgment, though, as I would have really missed out.

Dr. Jaime Weisman’s book As I Live and Breathe: Notes of a Patient-Doctor  (North Point Press, 2002) caught my attention for two big reasons:

1) I related immediately to the cover photo, as someone who has also received medical treatments for a faulty immune system; and

2) It was written by a doctor who is spending a little time on my side of that tube. 

I half expected the book to be written in a way to get me to feel compassion for a physician who falls from grace.  What I discovered—no, received—was another lesson in not judging a book by its cover.  Once again, I go in for one purpose and leave with another.  I expected revelations about a doctor’s new perspective and emerged with an appreciation of the human spirit. 

The absolute beauty of this book, for me, was in her writing.  Ms. Weisman was a patient first and headed towards a career in writing.  However, her turn towards medicine was a gift to many of us and still offers a reassuring voice through her practice or her writing.  Although she touches on medical issues and some of her own struggles getting through her days as a patient, I didn’t feel burdened by grief or enlightened about how best to navigate the medical puzzle.  She leads the reader both forward and backwards in time, skillfully tying together the thoughts and experiences that make up the cycles of experiences we all go through, healthy or not as healthy.  Her essays gracefully describe the complexity of her condition as a reference point for the reader, rather than as a badge of honor.  From that reference point, I wanted to journey with her and absorb her experiences in order to find a place or a word to help describe my own.  Her memories, poignantly expressed, resonated within me as a person first and as a patient second. 

This book is grounded on the importance of relationships.  All relationships, hers ranging from the professional ones she establishes as a physician and the personal ones she cherishes as a daughter.  Even the relationship she develops, continuing over time, with her body is testimony to the old adage “becoming your own best friend.”  The relationships she takes part in as a patient herself, with other patients and her medical team, are keenly explored and serve a models in finding your own best sources of support. 

After finishing this book, I am left with a sense of comfort.  There were so many passages that caused me to stop, mid-paragraph, and really pay attention to what she was saying.  Or, sometimes, to simply to pause and release some pent-up tears.  One quote, in particular, took me back to my own memories following my diagnosis over a decade ago.  At my ten-year appointment, where kidney failure and dialysis are quite possible for 50% of us with lupus, my doctor asked me if I realized how sick I had been.  My answer, as I’ve mentioned here on this blog before, was “no”.  Ms. Weisman puts my feelings about what I did know in the early years of my illness in the best way possible and answers my doc’s question better than I did: 

“The cure for the fear of dying is living.”   (Pg. 210) 

This book, and Ms. Weisman, herself, exemplify how powerful working towards a cure can truly be—for all us.

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Note:  I received no compensation for reviewing this book. 

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

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

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

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

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

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

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

Job Interviews and Disclosure

Insurance benefits and Disclosure

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

National Resources

Advocacy for Patients 

US Department of Labor  – Office of Disability Employment Policy

Oregon Resources

Disability Rights Oregon  

Disability.gov 

For Oregon Employers

Oregon.gov FAQs regarding disability in the workplace  

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

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

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!

This month in the MLWT Shelfari.com group , and continuing through March, we are discussing the book Unexpected Blessings: Stories of Hope and Healing (Penguin Group, 2009) written by Roxanne Black (now Black-Weisheit).  I received her book from her publishing rep last year, had just come across the LFA’s book recommendation list and set it aside until I had the chance to speak with her personally.  This month, we managed to speak on the phone and, I have to say, I was absolutely impressed with her. 

But, I don’t want to get ahead of myself.  Let’s talk about the book, first.  There are three main reasons why I would’ve bought this book, even if they hadn’t sent it to me. 

The first reason is that once you open the book, it invites you in with a sense of gentle honesty that isn’t here to offer you tips, recommendations, discuss medical treatments or divulge all of the unfathomable details of illness that are found in some other lupus books.  In their (other authors’) defense, there is a time and a place that we sometimes have to visit the ugliness to help us find the peace, and I would hate to not see those books available to us.  Roxanne’s book, however, is written with the intention to create a connection with the reader on some of the thoughts and experiences she has had over the years, in order to give reassurance that even the most challenging times are filled with humor, irony, possibility and encouragement.  It isn’t only for those of us with lupus, but covers life with chronic illness as a whole.  In fact, this book offers insights into the roles her caretakers, family and friends have meant to her and I recommend it to anyone who lives and loves someone facing any illness.  Some people she speaks to and of  include Christopher and Dana Reeve, a couple of champions on the perserverance and hope found within the human spirit.

The second reason is related to the first, in that this book is a very light, quick read.  It isn’t meant to be heavy or burdensome to the reader.  Instead, it reads like a moment shared that we often have with those people we trust and delivered in a style similar to those books offering the readers a ‘thought for the day’.   The chapters are glimpses into Roxanne’s thoughts, discussions, experiences and situations that she shares readily and with grace.  I could go to the book, read a chapter within minutes, get what she was pointing out and then continue with my day with a lingering notion of gratitude for being so lucky living with a mild form of lupus, hopeful that I will make some key and inspiring connections, calmed down in knowing that things will work out however they will.  This is a reference book I will keep handy for my heart, for a chance to visit a moment shared.

Lastly, the third reason I would’ve chosen this book is more personal in nature.  It wasn’t until I read the cover and followed the link to Friends’ Health Connection did I realize just how similar MLWT is to what she began years earlier.  Our project focuses on building community and stronger lupus resources here in Oregon and SW Washington, but it shares the same  premise:

that it simply takes finding one person who is going through things similar to what you are, to assure you that you don’t have to go through things alone, if you don’t want to.

 I had never heard of FHC, primarily because I didn’t reach out to others when I faced my own diagnosis.  I was the poster child of relationship-focused coping, where I circled inward and focused on parenting my two young girls, attempting to minimize the impact my lupus had on their lives.  They were an outlet for me to postpone thinking too much about my health, future and fears, offering me instead a feeling of control in something at a time when I felt I had little.  Roxanne began her network in hopes of learning and connecting with others who were going through the same things she was, which I may have done, too,  if I were a teen when my lupus arrived.  Since the late eighties, she has built an amazing ahead-of-its-time resource whose framework has been duplicated by many of the networks we now see online today.  The added feature that FHC offers, that I think is key in what makes her network truly exceptional, is how it honors the individuality of each person’s experience and connects them with someone who shares similar experiences to make a very strong resource connection.  Our PORT program does the same thing, but her network is worldwide in offering perhaps a little more personal space and many more potential points of connection.

You can read more about what others have written about Roxanne and her book, not to mention an excerpt here .  When I spoke with her on the phone, I wanted to branch out a little from what has already been written and narrow the focus onto lupus itself and the future plans she has for FHC.  I will cover that in the next post.

Check out her book through the Powell’s link here on the website or her website.  You can also catch up on the discussion (which gets more lurking than participation this round, but that’s fine) through our Shelfari Book Group link  on the sidebar as you read this post.  She has agreed to participate and answer any questions you have about her, her book or the Friends’ Health Connection, so take advantage of her generosity!

She is a wonderful person, not only in the stories she shares in her book, but also in the genuine hope that she has for anyone facing life with illness.  I strongly encourage you to get to know more about her~

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I was not paid for this review. Roxanne’s marketing coordinator sent me a copy of her book for review. The opinions expressed are all mine and I thank Roxanne for allowing me this gracious opportunity.

We have extraordinary resources these days via the internet to seek out more and more information, offering us countless opportunities to live well in the face of chronic illness.  All of these opportunities are based on the value of dialogue – whether with your doctor, loved ones, employers or those you ‘meet’ on the social networks and websites. 

Today, I want to introduce an opportunity to join in on another great dialogue.  

Every month, we will be facilitating discussions centered around books that explore many sides to living including illness, but not limited to it.  This month, we are talking about the book  Despite Lupus:  How To Live Well With A Chronic Illness.  As a special treat, the author, Sara Gorman, has graciously offered to join in and talk right along with us!  Her book (and her perspective) is more of a conversation about ideas than a self-help manual.  Her approach reflects the MLWT’s mission in recognizing the abundance of our own, personal knowledge of illness and creating the chance for a dialogue to strengthen it.  Offering a conversation is probably the best way to support a person in the throes of their adjusting to physical and emotional change.  

We won’t just be discussing lupus during November—we’ll be discussing our lives in general, that just happen to also involve living with illness.  If you ‘know’ what illness is about, please join in on the conversation.  If you are new to living with a chronic illness, join in on the conversation.  If you don’t think you need any support because you are doing okay with your lupus, join in on the conversation.  These book groups aren’t going to be just about reading the books—they are a chance to take part in this social connection that is more similar to sharing a cup of coffee and enjoying a conversation than attending a support group.  For some people, support groups just aren’t what they are looking for and bulletin boards can sometimes get too overwhelming.  These book discussions offer you opportunities to have something in common to share rather than just lupus, but if the subject of illness creeps in, no one has to explain themselves. 

Here is Sara’s opening for the discussion.  If you prefer to take part here on the blog rather than sign up for the other networks, simply comment on this post with your thoughts and I will transfer them over to the Shelfari.com discussion.  The month-long discussion can be viewed by clicking on her book’s image shown in the right sidebar on our website’s main page. The other networks where this discussion is being hosted are listed on the side bar once you open one of our posts.  We are also hosting it at WeAreLupus.org under the “MLWT Target Practice” community. 

Join in on this opportunity to explore what we already know and celebrate with others who are doing the same.

Author Sara Gorman:

“Hello and thanks for joining the discussion! I’m thrilled to be participating in the virtual book discussion of my book, “Despite Lupus”, and look forward to answering any questions you might have about the book. Feel free to ask about the content, the cover, the publishing process, or any aspect of my personal experience with lupus – I’m happy to share.  The book is available on my website – which is www.despitelupus.com, at MLWT’s blog, at several bookstores across the country, and on Amazon.com. I update the blog on my website several times a week, so feel free to stop by if you’re searching for more “Despite Lupus” talk. I just recently posted a ton of reader feedback on the site (found under the menu category “Reviews and Reader Feedback”), so you can see what others are saying about the book before chiming in. 

Since the book came out in May (on Amazon.com since June), I’ve been hitting the book touring circuit pretty hard. Each book signing has been better than the last, and it’s been wonderful meeting and connecting with so many people across the country, most of whom have lupus just like me. I’ve had to be mindful of how many events I take on, of course. Even though I’m living well, I still have to find time to rest up and not overexert myself. Lupus is still very much a part of my daily life, but now that I have the disease under control (thanks to the steps I’ve taken to live better – all of which are outlined in the book), I feel like I’m the one calling the shots, not the disease. What a relief! 

Having just returned from a book signing event this past weekend (the Lupus Walk in Richmond, VA. Go Richmond!!!), I’m primed and ready for your questions and anxiously await your comments. In the meantime, I’ll leave you with a question that came up several times throughout the event. Here you go and thanks!

Q: What advice would you give to someone who’s been diagnosed with lupus?

A: Oh man! Where should I start? Off the cuff, I’d pass on a couple pieces of advice that I learned in my lupus support group years ago, when I was newly diagnosed: 

1) Allow yourself to work through those initials feelings of sadness, anger and frustration. Grieving for yourself and the life you used to have before lupus is a very natural (and I think healthy) process, something that the more seasoned members of my support group encouraged me to do. 

2) Once you’ve allowed yourself to do this, realize that while lupus is a chronic, life altering, unexpected (and unwelcomed) change in your life, you can still live well, despite it. You have to step back and say, “Okay, I’ve got lupus. Now what can I do to improve my life with this disease?” Every day that you consciously decide to help your cause (take your meds as prescribed, reduce your stress, rest an extra hour or two, pass up on an outing that you know will push you beyond your limits), you’ll be one step closer to living well.

It takes courage, patience and self-awareness, but you can do it. Life with lupus can improve – that’s the best news out there! ”