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

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

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

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

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

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

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

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

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

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

Thanks, Leslie, for contributing to this important conversation~

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

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

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

2. The Pilates will be tailored to scleroderma patients. 

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

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

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

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

Here  is their invitation to you and a little information about what their afternoon plans to offer:

“The Oregon Chapter of the Scleroderma Foundation has announced that Dr. Catherine J. Markin – a noted specialist in pulmonary disease and critical care medicine at Legacy Good Samaritan Medical Center, and Director of the Legacy Pulmonary Hypertension Program – will present the 9th Annual Cheri Woo Education Seminar ’s keynote address scheduled for Saturday, March 13, 2010 at Tuality Health Education Center in Hillsboro. The free public seminar runs 10am through 2pm.

Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations intended to increase overall education and raise regional awareness of scleroderma, also known as systemic sclerosis.

In addition to Dr. Markin, the seminar is scheduled to present Dr. Anna A. Bar, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at Oregon Health & Science University.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  Justin Elson, DMD, of Gentech Dentist Hillsboro, will speak at the seminar on Scleroderma and Oral Health.

Scleroderma (pronounced sclare-a-derma), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  An estimated 300,000 people have scleroderma, of which 80,000 to 100,000 people in the US have the systemic form of the disease.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.

The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public. Breakfast and lunch are provided with every registration.

For more information, and to register online .

We have been discussing the importance of reaching those medical professionals who work most closely with lupus patients for quite some time  and are thrilled to be the first within the Lupus Foundation to gain such an opportunity!

There will be more information coming soon regarding speaker, topic and other details.  If you are a medical professional who may be interested in pursuing CNE credits in general or lupus education specifically, the website to learn more about the upcoming details will also be found at the University of Washington School of Nursing website.

Great job and thank you, Kathy, for being so proactive in securing our voice and our medical support! 

It seemed like a good idea at the time.

I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in.

As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family room.  There is no way to walk by the thing without looking at the embarrassing lack of progress and returning to that hunched position with a dire need to redeem myself by finding “just one more piece.”  After about an hour of work and 15 minutes of trying to stand up straight, it occurred to me that this death wish of a ‘gift’ feels uncomfortably familiar.

The new year is upon us and, although I resist at the start, I usually end up with at least a few ‘resolutions’ or goals that I put out into the Universe hoping I make my way to them within the next 365 or less days.  “Hoping” is the operative word there.  Every year, I tend to look at the entire year all at once, in all of its possibilities.  And, every year, I find myself overwhelmed with all of the work involved.  Unlike the puzzle, I shudder recognizing all the pieces of my life floating around looking for a place to belong.  I lose steam quickly and create some pretty amazing excuses, distractions and impressive cases of sudden amnesia—all in an effort to completely avoid getting anywhere in my big picture.

The thing is, my life is consumed by these unmet goals or resolutions just like that table is fully present in my family room. I can’t get through a day without noticing how little progress I’m getting to something that really could be beautiful, too.

Now, this doesn’t mean that I don’t accomplish things, because I certainly do.  What I’m not happy with is that they aren’t the ones my heart is aiming for and are often downsized for various reasons.  For the last two years, I’ve come up with some general goals allowing myself to ease up on some of the pressure in completing them.  That hasn’t been working out.  I’ve noticed lately several people talking about choosing only one word to focus on for your year, giving yourself something to look for in every day whether it be peace, joy, laughter, gratitude, and so forth.  The only work would be to find something in every day that reflects the word you choose.

I don’t trust myself in doing that.  I have been generally stating goals such as “better health” or “get in shape” thinking that they cover the bases. In reality, they leave me off the hook and unmotivated.

Perhaps I just need to focus on a visual reminder to get me through this year.  Puzzle.                                                                 (image: Buffalo Games)

This year, I chose only five goals that I want to see myself accomplish and complete.  I am viewing each goal as if it were a part of a big puzzle.  With Neuschwanstein, I am breaking the whole thing down by working on the sections of the picture: castle, lake, and branches.  With my goals, I’m using the same process and one that is recommended whenever we put together our action plans to address personal goals.  By having objectives that are specific and measurable, I’ll have direction, more focus and know when I’ve completed the tasks.  That will eventually make up the goal, because each image will become clear with every piece I place.  One of my five goals is still about improving my health, but I think I’ve come up with a more targeted action plan and already see positive progress.  Eureka!

One objective I’m using to measure my progress this year to “Build More Health Opportunities” (both for this project and myself) is choosing resources that get me to be more physically active and outdoors.  My current gym membership—you know, the one I made a big deal about starting last year?—expires in March and I’m not going to admit to you how many times I actually ended up going.  Let’s just say they were pretty darned expensive workouts.  The good news is that I do better with actual deadlines imposed on me by others AND I’ve found a way to integrate the gym experience more into my daily life.  That’s a whole ‘nother post, though.

This past week, I went to my first PDX Meetup.com group called Portland Women’s Outdoor Club .  The registration for this group grew so quickly and, I suspect, will continue to do so, as many of us celebrate in the realization that we can find others at similar physical and skill levels to motivate us to get out there.  There is a great mix of skill levels, interests and ages among the women who attended the first meeting.  I was happy to hear that the activities that I want to take part in more often and learn for the first time were shared by the majority of gals there.  Beginning mountain climbing/repelling, hiking, backpacking, and snowshoeing (although I really need to work on my stamina for that one!).  It was easy to find someone who had a lot of experience in this group in these particular activities who could lead the rest of us newbies.  There are also some pretty creative gals in coming up with some other options when the Oregon winter just isn’t something we feel like experiencing.  I haven’t gone to one of the activities yet, but my curiosity is peaked about this Wednesday’s gathering to learn how to make a coke can alcohol stove (for those ultralight backpackers  in all of us.)

 I will go ahead and cross this objective off, because I’ve signed up with an opportunity and met some of these gals—my biggest hurdles.  I am really excited and encourage any of you locally to check this group out.  The more people, the more options, more opportunities and all the more likely I will take part.

I hope to see you, too!

I spent a great deal of time in 2009 putting together the new blog set up and managing the social networks to find people out there and learn from them as much as possible. All that time behind the desk, however, took time away from trying to build this project into that strong support network hub for those living right here in the Pacific Northwest.  Of course, the goal for this project isn’t to imply expertise regarding lupus or other lupus-related illnesses and conditions,  as much as it is to offer a connection point for those of us looking for a variety of local resources when they want them.  Those resources need to be created and it takes hitting the pavement as well as the computer keys.  So, I stepped up the face-to-face work that I’ve not made enough time for this year.

Since this is the holiday season, getting those cards sent and stopping by to catch up with some colleagues was not only fun, but energizing.  I’m looking forward to the New Year with plenty of enthusiasm.  New one-to-one services, our Target Practice crew get-togethers, community forums and professional collaborations with health representatives will be topping our news for 2010.  I will be stopping by the blog more regularly with topics in the areas of interest that we hear from you about most often.  I will be putting myself out there for my New Year’s goal of regaining some lost footing in my health.  We will be starting up the book chats again in January and we are still taking last minute suggestions!  A lot to look forward to begin focusing in on our mission with this project~

“…to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.” 

Now that the website is on board (and still evolving with new details) and we have flyers out in the community, it’s time to get back to focusing on those strong resources, in reflecting the potential and well-being of those living here in the Pacific Northwest.  Back to targeting the living and learning areas in our lives that happen to include lupus in varying degrees.  It isn’t only about having lupus — it’s about living with it well and on our own terms.

I want to personally wish everyone an amazing holiday season and a year of limitless possibilities in health, opportunity and enjoyment. 

We will be checking in with you very soon~

                                                                                                    ~Ashleigh Brilliant

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

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

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

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

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

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

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

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

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

So you are probably groaning right now and understandably so – lame title, I know.  However, it fits what has been going on here and I will explain a little about the silence in my posting for the past few months. 

I thought I would throw in another photo from our trip, no matter how poor the quality.  This is time spent with family and friend at the Wurstkuchl in Regensburg,acclaimed oldest sausage house in the world.  Right on the Danube and great food (love their mustard and brought some home) - I found this short video from another visitor during the winter that gives you a little peek.

Seems that after I had so many wonderful writers visit in the month of May, I felt just a little nervous getting back into the driver’s seat.  It turns out that there were many reasons for that paralysis, not just intimidation.  After spending some time, money and energy since my return from vacation, things as been busily brewing.  With an improved focus, rested sense of self and an incredible resource network to draw from, we are back on track.

So here is a quick rundown of some of the things we will be posting about beginning tomorrow:

Summer wrap-up ~  Some of the events, people, places and experiences that have been noteworthy for MLWT, our guest bloggers and myself.

MLWT Announcements ~ Keeping you updated on what is going on here that will offer you some ideas and opportunities to learn more about your local lupus community. 

Pilot Program Participant Recruitment ~ We are unveiling a new communication curriculum ready to be offered locally.  Any individuals interested in exploring a different way of expressing themselves and their illness (lupus and lupus-related conditions/syndromes/diseases) to those they share their lives with can sign up to be part of this action research project.  Portland-Metro, Vancouver, WA and south I-5 to Salem areas only.

Local News ~ Regular highlights of local resources, events and programs to know about regarding living, learning and lupus.

Book Discussion Groups ~ Beginning September 1st, we will be reviewing, discussing and putting into ‘action’ our first book choice for the next couple of months continuing through June 2010.  Discussions will take place in the MLWT Bulletin Boards.

People2Meet ~  We will be spotlighting individuals who we think are making a difference in living well – no matter what their challenges may or may not be.  We are taking submissions from you out there of people you think deserve a moment of gratitude. 

Invisible Illness Week 2009 ~  Begins September 14th and we will be following up on some of the topics being discussed during the week. 

Portland‘s Mad Hatter Walk and Roll 2009 Countdown ~ Some ideas on how you can easily contribute to this local OR annual fundraising event…even if you can’t make it to the walk!  Be sure to visit the LFA Pacific NW Chapter’s Firstgiving page for more information on contributing both here and in Washington State.

We’re getting busy as we head into Fall…you might say we’re going back to school, too!

During my visit to Germany, my whole concept of communication was challenged, improved, questioned and instrumental in helping me more clearly define my relationships with others.  I knew my college level, proper German wasn’t going to be all I needed in order to connect with most of my relatives who speak Bayerisch (Bavarian).  I was going to have to pull all the stops and throw in non-verbal methods, too.  I used facial expressions, sounds, hand gestures and other Charade-type antics to help fill in the obvious gaps in my understanding of their language.  My daughters were even more challenged since they didn’t speak any German other than a few words here and there.  My last trip was wrought with self-inflicted panic, frustration and silence, simply because I expected my attempts to be effortless and perfect.  This trip, with my daughters present, I chose to take a more playful approach in trying to speak simply because I wanted this trip to be a wonderful experience for all. 

Even when all parties are speaking the same language, we still struggle sometimes with communicating well.  So many factors get in the way of really getting to what is important and meeting the needs of all those involved.  The reality is that expecting perfection or assuming intention is probably the two most troublesome behaviors we add to any conversation and an important point for us all to remember is that words don’t always work – a playful and creative approach to building those connecting bridges can sometimes cut out a lot of the emotionally-charged breakdowns. 

I watched my girls develop these bridges without them even realizing it.  They were able to spend three days with their third cousins and not only succeed in basic communication, but have fun trying it.  Granted, these cousins are required to take English in school – similar to our requiring two years of foreign language in ours.  The key to truly learning any language, though, isn’t just reading books, taking classes or wanting to learn.  Immersion is the only way to fully develop skills and that is possible only when you don’t believe you have options.  Translators are necessary, but ask yourself “How did I learn English?”  It was more than having the right words – it was not having anything else to fall back on and needing to discover ways around the words we didn’t know.

So as we practiced and improved with each passing day, the idea of my communicating with others here – regarding my illness or just my intent to preserve relationships – began to unravel.  I am including this YouTube video (hope it works) from the movie because it reflects so perfectly how I sometimes feel when listening to my doctors (the “Floor Walker“)  in giving “The Box” rules (lupus) and other well-meaning friends or family (“The Captain“) who find themselves frustrated when I appear to not be taking care of my health.  There weren’t any language barriers in this movie -all spoke English.  However, there were clear breakdowns in how the needs of all the participants were getting expressed and no intentions to build bridges. 

Power and control are double-edged swords we humans must weigh every day.  Just as physical behaviors have a way of deterring people from seeking bridges, so, too, do our words – or lack thereof.  How many of us have experienced a conflict where the very person we are trying to resolve conflict with chooses to be silent?  There is a lot of power in pulling away – it is also very cowardly.  I can say that because I know when it comes to explaining myself sometimes, I have chosen the quiet route.  I have learned, however, that the message I am trying to send is not to gain control.  I now simply tell the person that I need to gather my thoughts or that I want to focus on moving forward rather than hashing out a past that is gone.  Once something is in the past, it will never be changed.  It’s the future that we can do something about and depending on how much those relationships matter to us is going to determine how creative, invested and successful we will ultimately be. 

I came home to an angry email written by one of my cousins, who felt disrespected because our visit with her had to be cancelled.  She is family, knows that my uncle has end-stage colon cancer and that I have lupus (the heat and sun put me into a flare with lesions on that particular day).  The email was in German, but I got her gist.  I recognized words like “stupid”, “lazy”, “irresponsible”, “rude” and clearly understood her statement to never speak to me again.  I wasn’t truly shocked by her email as I was by her lack of compassion for my uncle.   He wanted a chance to see this castle and I was pleased we were able to go with him,  even if it meant losing her.  

I don’t really expect people to understand my lupus – remember, learning a language requires a certain degree of immersion and I wouldn’t wish lupus on anyone if they can help it. 

However, knowing that my uncle may be gone by the end of the year, how could she shun him?  She is avoiding phone calls and pulling the silent-but-deadly approach over an issue that could have easily been resolved – she was only 15 km away from where we were and is healthy.  Driving to us was possible, yet she chose to sit and wait for us to arrive.  How creative or flexible is that and what need led her to the point of this email? I hope to never understand that.

She wrote that email fully believing that she did all she could do and we let her down.  She cracked that Captain’s whip and lost control because we got under her skin and reminded her that all we sought was compassion.  The silence she offers now serves her more than it does us – she wants to feel only her disappointment and not learn anything about living with illness.   It takes guts to face someone and work things out.  This is why creativity and flexibility in seeking out a variety of ways to communicate is so important.  We need to develop a good understanding about what our own needs are behind these conversations in order to resolve any conflicts. 

We already have so many things blocking us in our lives  – especially when our own bodies stand in our way of allowing us to be who we want to be.  As difficult as it is sometimes to understand why people don’t understand us, we need to try and focus on what really matters.  Do I want to create a wall with people because they don’t know my language  and do I want to instead keep looking for that bridge that helps me meet them part way?  Simply by living with, sharing a gene pool or treating my illness, all these people will learn some useful words in communicating with me.  However, it is immersing ourselves into a language of the heart that will help us become more creative and resourceful in connecting with those who matter most.

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For more information about Burghausen

When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options – all to quench my thirst for conquering this disease single-handedly.  Early on, I didn’t recognize myself as a part of a medial team or a community.  Basically, my attempts to control my illness meant shutting off any communication that didn’t offer me any sense of personal control. 

Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and energy if it were around when I first started my adjustment process in learning to live with illness.

The book is entitled Despite Lupus:  How To Live With A Chronic Illness (Four-legged Press, 2009) and written by Sara Gorman, who authors a blog under the same name.  I have been reading Sara’s posts for over a year now and have always felt a connection to her perspective on living with lupus by making self-supporting choices in living well.  When I received her book, I was thrilled to find the same tone and presence in her book as I’ve enjoyed on her blog.  She offers a comfortable blend of approaches including a ‘think-out-loud’ way of sharing her own personal experiences in adjusting to lupus and a casual, supportive style covering some practical tips, exercises, tools and questions as if you both (reader and Sara) are simply chatting over a cup of coffee.

Her book doesn’t focus on the medical information that can sometimes overwhelm us- especially early on in our adjustment process.  It is important to learn as much as we can about how our bodies work/don’t work, what our treatment options are/aren’t and what we can do personally to manage our symptoms.  However, coping and adapting to illness is complicated and requires addressing some of the emotional and behavioral choices or decisions we will face along the way.  This is where Sara’s book shines ~ its mission is to encourage the reader to look at their own personal roles in defining their lives with lupus and respecting their physical needs necessary to make their lives outside of lupus as fulfilling as they wish them to be.  She reinforces this by using the theme of communication throughout the book and shows how crucial it is in creating those fulfilling lives.  I found her chapter on communicating with doctors particularly valuable, as I believe the relationship between patient and physician is key in establishing healthy adjustments to and better choices regarding lupus early on.

Despite Lupus offers a great deal of information in a narrative style, rather than more of a workbook or structured format.   At first, it was difficult for me to see this as a ‘how-to’ book, simply because I am so used to other books leading me through steps that I could easily skip and exercises that I could blindly avoid.  Whether she meant to or not, her book’s format challenged me to read through, lulled by the sense that I’m learning from someone who “knows” what having lupus is like, only to discover that I had stumbled upon yet another skill-building technique I thought I had mastered the art of snubbing.  After a decade with lupus, I had grown jaded at reading the same tips and suggestions over and over, no matter how valuable I knew they truly were in coping.  A passage from Sara’s book perfectly describes my lupus moments or ‘fits’ I experience even today:

” …when life is forced upon you, without your consent, as your chronic illness has been, you panic.  You rush to defend yourself against the intrusion, fighting to preserve the comfort and control you’ve always known.  Not only are you seizing the past, you’re grasping the future.  You believe your plan is the only one that will lead to your desired destination, and anything else is a ruse. “    (Page 85) 

I have several books on lupus, or chronic illness in general, that cover the emotional and behavioral challenges we face within our self-concepts (or identities) when dealing with illness.  Sara delivers suggestions and steps in a way that gently encourages the reader to consider them, because they have worked for her.  I found that I was much more open to actually do some of them the second read through (I’m just extra stubborn), even when I knew they were coming up.  She offers them as a friend, not a guru, and that helps me remain open to trying.

Sometimes hearing other peoples’ tales about their lupus experiences can be frightening, deeply saddening and leave us more locked into refusing change than ever before.  I can assure you that Sara’s book provides clear pointers for newly-diagnosed patients and some valuable reminders to those of us already well-versed at lupus.  By learning more about her, she inspires us to step back and consider possibilities, communicate more clearly who we are to ourselves and others – and to define our lives to be well worth living, despite our lupus.

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October 23, 2009 Update:

Sara will be joining in on our November book discussions!  We will be on the Ning Communities of Ardent Celebrations and LupusMCTD, WeAreLupus.org and Shelfari.com.  We will also put up a post on our website November 1st  introducing the discussions , so that you can comment about the book here if you prefer.  Sara will be doing the same on her website.  We look forward to you joining  us~ 

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