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. 

“What is the nicest thing (or things) anyone has done for you since you became ill?”

I believe the nicest things that I’ve received from people since my health challenges hit me have been to offer me reality checks about humanity. 

As difficult as they may feel at first, the comments, behaviors, choices and changes in our relationships have motivated me to respond in ways that have been outside of my comfort zone.  That blundering through my fear, grief, anger, apprehension and surprise has built within me a sense of resiliency that I never knew possible.  It has also led me to some surprising appreciations. 

Those relationships that dissolve due to the loss of knowing which words to speak, or the ugly realization that their patience really DID have an end, offered me opportunities to see that all people are fallible.  It has been easier, after some time passes, to run into these individuals (who walked out of my life or visa versa) and speak to them as fellow humans.  These are simply honest people who may have made decisions that hurt me, but were decent enough to be upfront about it. 

It has been the relationships with my medical teams that have given me moments of vulnerability as well as moments of gratitude.  Beginning with my first practitioner’s refusal to acknowledge the necessity for a urine sample to my specialist’s decision to waive his fees in light of my difficult circumstances, I have learned much about the dimensions of medical care.  The hospital’s response to my then insurance company’s act of betrayal showed me that  they do have the capacity to care.  The laughter and care of the staff, both at the labs or during my hospital stay, gifted me with moments of respite from the uncertainties I was facing.  In fact, I was amazed at the commitment my medical team had shown during my hospital stay by keeping a toxic individual from threatening my chances of survival. It was through their security and protection that offered me time to bounce back from kidney failure by restricting their visits, for which I will always be grateful.  As easy as it sometimes is to become frustrated with how our nation’s medical care falls short or how cold our doctors may seem during our 15-minute appointments, seeing the other side of those presumptions has pushed me to look beyond the white coats and clip boards.  They live and breathe just like I do.

There have been individuals who have astonished me with their compassion and respect, even when they didn’t understand what was going on in my life.  The mysterious food boxes left on my front porch without a note.  The bills paid on my behalf without explanation or warning.  Their cards, letters, phone calls and emails touched my hardened heart with grace and sincerity.  Their well-intentioned, unsolicited questions and suggestions forced me to listen to reason through my veil of distrust and seclusion.  Their understanding that they would never fully know what I was experiencing allowed me my time alone without explanation or apologies.  They knew I needed the time to breathe and, when I felt I needed no one, they helped me to see how wrong I had been to hold onto my pride like a medal of honor.  It was clearly more like a fortress of shame and was something that needed to be dismantled. 

It is easy for us living with illness to see ourselves outside of a mainstream, assuming that those around us are generally healthy and live without pain.  The fact is, our human bodies have the potential to break down in so many ways, some in plain view and some well disguised.  As we physically hurt, those we share our days with also hurt.  By not knowing how to fix things, what to say or where they can make the connection with us to show us how much they care.  Those individuals who keep their distance or walk away are showing us their limitations and vulnerabilities, too.  It hurts to realize we can’t do or must do the thing we sometimes need to do.

I’m learning to see beyond the actions and listen beyond the words in order to understand our shared human conditions.  It isn’t always easy or instantly possible, but I’m getting better at recognizing limitations as simple realities.

It is in facing the walls or getting through the battles that do contribute to my story.  It is the stories of others that help me keep my own story in perspective.  The kindest thing that I feel anyone can do for me is to acknowledge my place here on earth as a part of a bigger story.  I’ve learned that the essence of being human is exploring the complexities of the many characters living within our stories. 

The struggles and villains make the story interesting.  The perserverance to keep going makes it all worth the sharing.

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Visit Q and the rest of the participants at her blog carnival!

Healthcare.gov is coordinating this insurance plan that has been offered to all 50 states as a means of meeting some of the immediate needs until the entire 2014 health care reform law will take effect.   Some states opted out of using the allocation funds due to their concerns about receiving enough funding to cover the insurmountable health care costs facing their high-risk residents.  Oregon is one of the states that opted in to using the funds for this new insurance plan and you can find out more about what  the program might offer you by going to this Healthcare.gov link. 

I know that there are plenty of people in this high-risk category and that it would be impossible (on many levels) to create a plan that offers something for everyone.  Although my situation meets the criteria to pursue this option, the fact is that I would end up paying more per month than I do now and I simply can’t afford it.  That isn’t by choice, mind you. 

The whole idea behind insurance is that we put money into a bucket per month that is supposed to insure us from future medical expenses and I get that.  Paying something each month to know that I will have some help paying for appointments, procedures and (heaven forbid) emergency situations is a wise investment.  Here’s the catch, however.  I paid for years when lupus hadn’t even arrived yet into a large insurer’s pocket and rarely needed any medical services.  I was young, healthy and taking the best care to make sure I stayed that way, yet I still paid them for this unused care through my employers totaling several thousands of dollars.  Decades later, and without warning, my health took a turn and I needed that coverage.  Although my employers and plans had changed, this company had my name and track record on file.  In spite of the money I paid and with little cost to them from their profits via my investments, they threw me to the curb.  Actually, they threw me to the curb AND sued me for $10, 000 claiming I knew I was sick before I signed up for my health plan.  Hello, …my doctors didn’t even know what was going on until my kidneys shut down.  But, that’s a nightmare best left in the past. 

It is the past, however, that has put me where I am today.  I cannot get insurance, even if I could afford it.  There are many things about the new Affordable Care Act taking effect in 2014 that has me worried.  As wonderful as it feels to think that I will have coverage, even with my health history, I still don’t know how I will be able to afford it.  Having options is one thing, but the question about who foots the bill—our government or myself—is what haunts me.  I agree that we need to develop a healthier country and providing more health care options is a great step forward.  The health care costs are still way too high, though.

Do I want to, once again, put what cash I have into my health care bucket only to have an insurer avoid returning my investment when I need it?  Will they hike the expenses and/or claim that I did something that disqualifies my right to the care I invested into?  Worse yet, as this news segment points out, what if I put into this plan and they run out of money before I need it?  Let’s face it, insurance may be profitable, but managing my own health care is not. There’s something really wrong with that.

As I wait for the industry to be seriously overhauled, I focus as much as I can in making the best choices I can every day to avoid future health woes.  There’s no guarantee either way, whether I pay an insurer or myself to put into a savings account, that I will have the care I need when I need it.  I can’t control what the insurance companies do, what the government will or won’t provide or how my lupus will progress.  There are a few things I can eat, move, try, think and prepare for that might cost me less down the road.  Even that sometimes costs me a pretty penny, but well worth the effort. 

The gal in this news segment, Ms. Eaton, who is living with the heart condition represents many of the people I work with every day.  She also represents my situation very closely.  Many of us aren’t disabled, are still working, take care of ourselves and are willing to pay what we can.  We understand that health care will never be free and that preventing illness would be ideal.  We also know that we don’t ask for diseases like lupus, genetic or congenital conditions, see ourselves as victims or live to frustrate the medial establishment.  We are simply going to have to do what we can with what we have until “health” is as valued as “profit”.

Where are you in all of this?

• Have you lost your health coverage through loss of employment or cutting costs at work?
•  How well can you manage your illness without care?
•  What are some of the things you let go in order to manage your health?
• How do you expect to handle the 2014 shift?

 After taking a look at the news segment link and learn more about what the preexisting insurance plan offers, I would be interested in hearing what you think.  Share your story, too~  you’re not alone.

Monday was a day set aside to reflect on personal sacrifice, dedication to values, making commitments to those we share our lives with and things to believe in.  It was a day when we said “Thank You” to all those who have, and continue to be, on the frontlines for us all.  

As I prepped my dedication to my grandfathers who took their place in WWII, one sent against his will to the Russian front by Hitler and the other who willingly left his home here to fight against all that Hitler stood for, I also sent my thanks to the many people I have had the opportunity to talk to these last five months.  

I have been pretty absent from the blog here, my Twitter and Facebook accounts, the newsletters and blog carnivals I usually write for, the book discussion group and other social networking groups I belong to.  I feel bad about losing touch with the many wonderful people I’ve grown to love hearing from.  However, I knew this January that it was time to get out here locally to do much more person-to-person outreach work in order to learn as much as I can about all of you living here in Oregon and SW Washington.  I know I’ll be back online to catch up with my friends eventually, but I also know that there is only so much time and energy I have to work with.  Right now, it’s time to get out into the local trenches and begin getting a clearer picture of what our health battlefield really looks like here. 

Over these past months, I have had conversations with individuals who live with illnesses of many types and have heard the same words used by them as I have heard referring to this weekend of remembrance: 

“I have lost someone dear to me who fought as hard as they could against lupus.”

“I walked into that appointment as one person and came out of it as someone else.” 

The symptoms change all the time and I never know when they’re going to hit!”

“The problem is, it’s like living with an invisible enemy that only I can see.” 

Monday also marked the end of Lupus Awareness Month, which I was pretty absent from participating in this year, too.  Some of it was in response to the lack of entries to our awareness event this year.  Last year’s event was amazing, while this year’s fell on deaf ears—even the ears of my closest health blogging friends.  In fact, it appears that many fellow health comrades have been MIA right along with me.  Or, dare I say, outright deserters?  If we have a choice to step out onto the battlefield or pursue different paths that bring ourselves peace and joy, why would we choose battle? 

There are some strong similarities between war and illness, which is why you will often hear military speak used in health publications and public awareness campaigns.  There is something admirable about making it through formidable health scares and wearing our ordeals like badges of honor.  For those of us who see ourselves as lupus veterans, we wish to tell our stories because getting through it all truly pushed ourselves into situations we never knew we could possibly survive.  And, again as war veterans do, we sometimes have to deal with the questions and judgments from those who believe that our stories glorify something ugly and unnecessary.  The judgments are harsher for those who either willingly sign up to defend or for those who seem to have brought on their health challenges through poor choices or habits.

When one is drafted into a war that we don’t understand or drafted into health challenges we don’t understand, experiencing those barriers put up by others is difficult to take and quite painful emotionally.

When we are put into situations that are as harsh and sometimes brutally real as both war and illness can be, being able to speak openly about our experiences are more about our own survival.  Getting through things we never thought we would get through gives us those badges of honor. We need to acknowledge those hardships, because they become concrete parts of our identity and never truly leave us once they are within us.  We all have different levels of tolerance and the capacity to get through a scary experience varies from one person to another.  When we have had particularly traumatic experiences, the need to work through them emotionally does require using our voices to release the thoughts, fears and hurt we go through.  We need supportive reassurance to help us understand that we have either done or been through things that we truly didn’t deserve.  For those who seem to deliberately walk into harms way, there are belief and value systems that are so deeply embedded into who we become that choice isn’t really what happens within us at all.  It’s simply acting upon what we know and feel to be true.

In any event, judgments serve no purpose in supporting each other through the ugliness that life can often put us through. 

I have come to appreciate even more how important just listening to someone’s experiences offers so much insight. Not just about the person telling the story, but who I am and how their experience does apply to my life as well.  Even without going through their battle or seeing their viewpoint from where we stand, we never know what we are capable of until we have to be there or make those difficult decisions.  In fact, choosing not to make the difficult decisions can cause even more pain for ourselves and others.  For those of us fortunate to not having to see ugliness firsthand, we forget how much we benefit from those who do.  We learn from them that we need to work harder in preventing those situations that do so much harm.  We learn that it takes a great toll on those who have to carry that ugliness and loss around within them.  It also teaches us that we all share one experience—the human one—and it requires finding hope within every experience to keep us all going. 

Thank you to all the wonderful ladies who have spoken with me these past weeks.  Thank you, veterans of all types of wars, who did what so many of us didn’t have to or couldn’t bring ourselves to do.  I recognize the prices you have had to pay so that I might learn. 

I honor your courage.

Heck, let’s put it right out there: sometimes it feels more than challenging, it feels overwhelming and insanely frustrating. We may find ourselves grumbling through our self-care routines, bemoaning the extra time and energy we need to invest on a daily basis to keep ourselves healthy by eating right, exercising, getting enough rest, and so on. Do you ever find yourself wondering, “If only I didn’t have to deal with this illness on top of everything else, then maybe I could get on top of things, then maybe I’d have enough time to enjoy myself once in a while, then maybe I could be happy with my life”? 

I certainly have.  It is a lot to juggle. It is frustrating. And yet, there comes a moment, many moments in fact, when we have a choice: stay stuck in the frustration, anger and complaining; or come to terms with some basic level of acceptance with who we are, the body we have, the life we’re in. Because that’s when we can actually begin to tell the story we want with our lives. 

This is not easy, to give up this fight, to move past trying to prove how this really isn’t fair, and instead to just sit with it – to let ourselves feel where we actually are in our lives, to see this chronic condition as something other than just an extra burden we haul around. But in those moments when we’ve had enough of frustration, and we are feeling courageous enough to dip our toes into the edge of acceptance, we begin to see our lives in a new way; new possibilities open up for us. 

In my own life, when I rest in acceptance with having cystic fibrosis, I feel a surprising affection for this body I’m in. I get a sense of the bigger picture of my life – how my having CF has influenced the course of my life and pushed me to develop other aspects of myself, how much empathy I have for others struggling with health issues, how I want to reach out and connect and help. 

When we allow ourselves to accept who we are and what we have to work with, we find new and sometimes unexpected ways to move forward in our life’s journey. For me, this feels a lot better than those times I choose to stay stagnant with frustration and complaining.

So the next time you find yourself wondering, “If only I didn’t have to deal with this,” go ahead and grumble for a few minutes if you need to get it out of your system. But then I invite you to pause a moment, to feel if there is some space in your day and your being to allow acceptance to drop in, to sit with it a while, to feel the bigger picture of who you are and the gifts you bring here, and to ask yourself instead, “What is the story I’d like to tell with my life? What does today’s chapter look like?” And then, dive in, and enjoy. 

With heartfelt thanks to my meditation teacher, Brenda Morgan , for helping me feel the possibility of acceptance in my life.   ~Sarah 

You can connect with Sarah at www.welcomewithlovefamilycare.com, or by emailing welcomewithlove@gmail.com.

“What we call a symbol is a term, a name, or even a picture that may be familiar in daily life, yet that possesses specific connotations in addition to its conventional and obvious meaning.”  (Source:  Jung, C. (1964). Man and His Symbols, (Ed.). New York, NY: Dell.)

I came across this definition the other day after seeing several references to images being used to describe health challenges by bloggers, tweeters, authors and fellow patients.  Use of symbols, icons, or archetypes is deeply rooted into our human existence and I’ve noticed many patients rely heavily on images to develop a sense of personal understanding or acceptance of life as they see it.  Some images are man-made and have meaning applied to them on behalf of what is collectively agreed upon.  Others discover something on their own, that identifies or expresses what they need to say whether others ‘get it’ or not.

Take lupus, for example.  We see wolves, butterflies, the color purple, or the advocacy wrist bands.  Sometimes words are used to help solicit an image when read, such as “survivor”, “warrior”, “lupie”, and so on.  Heck, even using social media for networking with other patients adds to the word list like Twitter “followers”, Facebook “friends” or “fans” and some sites use ranking terms such as “expert” or even “ninja”.  This is very natural for us to do and we may not even realize it consciously, as in using something to remind us of future events.  We automatically apply images while we doodle, decorate or through other more creative, right-brained endeavors.

Having used the super hero Wonder Woman (DC Comics ) for years, the obvious unrealistic physical dimensions aside, I recently reconsidered that image for myself lately and whether it still applies to me today.  Things have changed since I began using her image to lighten up what I was experiencing with my lupus and daily life, in general.

Choosing an image that personally fits our perception of self is important, in order for it to be effective as a source of inspiration or expression.  Keeping that image or symbol current, however, is just as important and revisiting the one(s) we use needs to be done periodically.  As we all know, lupus isn’t a constant state of being—it’s a daily experience.

May is coming up quickly and that means it is time to get ready to host our annual MLWT Lupus Awareness Month event.  Last year, we invited all of you to submit your thoughts on what lupus meant to you and/or your life.  This year, we want to take that one step further and open it up beyond just words.  After all, sometimes words just don’t cut it, right?

We invite you this year to explore the symbols you use in your life to represent, cope with, express to others or identify with in regards to lupus.  Do you use the collective butterfly or do you have some other image that you feel represents your lupus more effectively?  If you don’t have one symbol or image, we invite you to contribute a photo ‘portrait’ or visual representation in one shot that you feel tells your story, experience or perspective.  Your garden, your pet, your latest craft or artwork, a scene from a trip, any culinary masterpiece or favorite food (i.e. chocolate?  Why not?)  You can find a couple of my examples here and on blog posts for the next two weeks before May 2nd to get you thinking about your own images.

If submitting portraits, we ask that you do not submit any photos that identify or show the faces of the subjects, due to legal and privacy issues.

The catch in the submissions, though, is to create them around the word “strength”.  We are choosing this theme for two reasons: 

1)    How many times have we heard someone assure us that we don’t appear to be “sick” or that we look “fine”?  Do we take a minute and realize just how much strength it takes within us to look that way to others, while our bodies are being ravaged by our own immune systems?  Our guess is, “no.”  We want to focus on that strength, which using symbols or images are often used for, that helps us recognize what it takes us to get through the day and honors us with some self-care.  We spend a great deal of time caring for others, so May will be an opportunity to care a little for ourselves;

and 

2)   MLWT is not only about sharing with others who are living with health challenges, but also working towards sharing our lives with others who are not facing any current health challenges.  This could be family, friends, employers and co-workers, teachers, neighbors, politicians and public servants.  We at MLWT believe that the best way to advocate for lupus awareness is to live with it well and make it relevant to others, based on our strengths rather than any limitations. 

Beginning today, take some time to re-evaluate your symbol(s) or create an image that helps define and express your life with lupus.  It may be obvious, as Jung states in his definition, or more subtle.  We envision examples of work including photos since we are focusing on imagery, but as I mentioned earlier, words can bring out images, too.  If you aren’t inclined to submit any photos, don’t let that stop you from contributing something in writing. Favorite recipes, poetry or quotes, short stories (limit 1000 words), sharing of memories and lessons learned that represents an idea you use for your tomorrows. 

Send us your submission by email (mylifeworkstoday@gmail.com) with your  .jpg (common photo online format) and word document ( if written) attached.  We simply ask that you honor the intent of this event by practicing some discretion, as we will not be responsible for content that is deemed offensive by some or do not observe all copyright and/or trademark laws. 

All submissions are to:

• be your own, original work
• include your first name;
• any contact information, if you’re interested in hearing from others via emails, Twitter or Facebook
• include a little blurb sharing what your submission represents for you. 

We reserve the right to refuse posting submissions if we do not believe they represent the mission of MLWT, the spirit of this event, or honors the safety of our community.

We are looking forward to another wonderful event and to learn more about making lupus visible, by expressing the uniqueness and strength of each one of us who lives with it.

We’ve been asked by the National Lupus Foundation and our own Pacific Northwest LFA Chapter to post  reminders about this annual awareness event.  Both offer important and convenient ways to help get your voice out there to policy makers, researchers and organizations instrumental in making our lives with lupus more empowered.

From the National LFA Office:

“Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home!

 
As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16.  Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
 
Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator
Raise awareness by sending an ecard
Spread the word on Facebook and Twitter, or through your blog

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page. 
 
Remember, we really need you to make your voices heard on Tuesday the 16th.”

From our PNW Chapter:

“Another way to advocate:

Download “Lucy” on iTunes by March 15, 2010 to donate to lupus research

One hundred percent of the proceeds from each download of the Julian Lennon and James Scott Cook song “Lucy” on iTunes will be donated to lupus research thru March 15, 2010. The funds donated from the single are restricted to support the LFA’s National Research Program, Bringing Down the Barriers. Time is running out on the promotion, but it’s not to too late to spread the word, and encourage constituents to download the song.

You can promote “Lucy” in a variety of ways including outreach to local radio stations encouraging them to play “Lucy”, emails to your constituents, on your website, and through social media… We [are] also thrilled to share with you that Julian Lennon and the story of “Lucy” will be the cover story for the next issue of LupusNow, which should be completed by Mid-March.”

To download the song on itunes, go here

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Advocating for lupus isn’t limited to those of us who struggle with more severe forms of this illness.  It is puttting  your voice into the national conversation as someone who lives with lupus no matter what degree of progression. For someone you know who has this illness, who you can find if you simply ask anyone in your social circle.  The sheer nature of autoimmune disease is the inability to predict what your illness will be like tomorrow, whether your daughter may develop it through genetics, whether your friend will lose their job because of the health challenges they struggle with to remain on the job or the fact that one more person has to file for disability that you, the tax payer, will now have to support.

The healthier and sustainable we can remain while living with this illness, the better off our entire communities will become.  Take your part in creating a healthier community for all of us~

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UPDATE 3/16TH from LFA National Office:

Make Your Voice Heard Through March 19th!

Simply go online to the LFA’s advocacy action center and you’ll see a section called “Action Alert.” Click on the link called “Take Action.” Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you’ve completed your message, click “send message” at the bottom, and that’s it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important!

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.

Realistically speaking, the days of being able to keep lupus and my Self separate are long gone.  Although there are days when I feel like there is no reason to see myself as ill, I know that not recognizing that fact will lead me to gloss over a part of who I am that I have grown to respect— more than I ever thought I would. 

There are many reasons for us to not see our health challenges on a daily basis.  We may see risking relationships with others, by informing them of our current state of affairs, not being worth bringing up the issue at all.  Loss of job, loss of companionship, loss of friendship, loss of innocence, loss of ourselves and questioning our roles that we use to place ourselves in this society.  Where does disclosing that part of our lives really get us? 

The “Loss of Self” ~ how many times have we heard that phrase in books authored by patients and professionals alike?  A distorted or unfamiliar view of who we are, where our places are and the unknown of what life means anymore, now that we see our health slip away?   

Wait a minute?  When did we ever have the answers to those questions?  Or, more accurately, when did the challenges within ourselves and with others become a static condition when we were healthy? 

Perhaps that is why some of us resist in making our illness an issue.  Maybe, to some degree, we recognize that the things we learn from living with an illness is stuff we should be learning anyway.  Gratitude for the simple pleasures in life to experience and share.  Friendship and learning how to accept help, support and encouragement from others.  Knowing when to say “when” and when to keep a little care for ourselves.  Learning how to communicate effectively and advocate for ourselves, because what we need does matter.  I’m recognizing that life is never going to be predictable and that developing a sense of inner strength will give me a stronger footing when some of the tough questions come up. 

Before you anticipate that I am about to say how grateful I am for developing lupus, don’t.  No one asks for illness and no matter how much good can come out of it, being ill is still a real drag and burden.  I feel for those who are so young and have to face their health challenges so early on.  They need to constantly evaluate each breath they take without the gift of time or memory of enjoying their youth.  I know that there are so many other people who experience the painful and brutal ravages of this disease, who are unable to gloss over their challenges, as I am able.  Those people who I know to be living with unfathomable health challenges are amazingly inspirational, funny, clever and determined people.  They are also pretty pissed off about having to deal with their health on top of everything else this life throws at them.  I imagine Bette Davis would have referred to illness in the same way she did about getting older:  “…ain’t for sissies.”  Do we really acknowledge just how much strength it takes for these people to “look fine?”  I don’t think we do, but we need to start. 

Just as this world has to come to the realization that living without illness is becoming a rarity and a majority of people have chronic conditions (since little is actually cured anymore – where’s the profit in that?), so do I.  That means that those of us who are living with chronic illness need to, also, recognize just how much of a majority we are and that there is little we should have to hide.  I let go of the notion that my talking about illness makes people uncomfortable, simply because it has become a vital component to who I am and want to be.  I hate having to take meds, but am so grateful that the ones I can get my hands on give me another day of opportunity.  I hate not being able to work full time in a job somewhere, but I get to explore avenues and new career possibilities—albeit from a financially-uncertain standpoint— that sometimes show myself just how surprisingly skilled and innovative I can be.  

I’m beginning to see how complaining about my limitations and feeling embarrassed about my heath is a form of self-hate that really has no place in my life. “TMI” is probably the toughest part about knowing me and is really more about me forgetting to ‘filter’ rather than having an agenda to seek sympathy. What that openness does for me, however, is offer me chances to keep the connection between myself and my health strong.  If that stays strong, then my contributions to family, friends and my community will, too.  The most challenging part about having lupus, for me, is getting caught up with those who question its validity as a ‘real’ disease.  I do realize  that those naysayers will eventually experience their own mortal decline, in one way or another.  Until then, I know what’s real for me and I have to take care of my needs the best I can by keeping things honest. 

Living with lupus does define me, but it doesn’t own me.  My relationship with lupus is what grounds me into truly knowing who I am, what I’m capable of, what I want and need from others.  I would be, should be, asking myself the very questions about my place and purpose here, even if I didn’t have this illness.  If I had good health, there would still be plenty of complaining, things to get frustrated and angry over, and experiences in feeling unheard or misunderstood from time to time.  Living with an illness is a human condition that joins us all in the experience and there is really no reason to hide any of it. Who is immune to declining health, anyway?  Mine has just been “auto”-mated for me and continues its processes with little regard to the damage it is doing to me.  Until those bugs are worked out, it still remains a pretty important component to my overall system that requires patience, information, technical support and the willingness to work with the many, very real, glitches. 

Am I thrilled to have lupus? Nope.  Am I ashamed and angry that I have it? Nope.  Would I be thinking about this kind of “Who am I and where am I going?” stuff without it?  Yeah, I better “be”.

Case in point, symptoms that present themselves when one is at a mild or moderate level of dehydration sound quite similar to my baseline lupus symptoms. What is frightening for me, personally, is how I am also seeing some of the severe symptoms  from time to time as well, telling me that this has gone beyond being a bad habit and has evolved into self-abuse.

Dehydration isn’t only a problem for infants and seniors, but is also a problem for those who live with chronic illness.  Medications, depression, lack of exercise, and caring for everyone else around us first can lead us into dehydration before we realize it.

I have been dealing with my usual February crud, that generally lasts on average the entire month.  I have no clue why it is every February and, since the month showed up before I could realize it, I’ve ruled out any self-fulfilling prophecy in action.  It starts out slowly then begins its movement from head to chest/cough to gut, back to chest/cough, head, and so on.  When I’m plugged up, I plead for drainage.  When I’m suffering from drainage-overload I wish for a good drying up to give me a break from the Kleenex™, sore throat and a constant hack.  It is during this ‘30-days in Hades’ sentence that I am reminded of my fluid intake habits, as I drink more fluids during this month than I do the rest of the year in total.  Even though I can easily point to my lupus as the reason why I feel the way I do these days, it isn’t my lupus at all. I’m beginning to pick up on a theme.  I’m not saying that my lupus is a fabrication, but that my behaviors really do influence my health both positively and negatively. 

This is a topic I’ve addressed here before. It applies to my new year of pursuing better general health habits, though. By addressing my dehydration and putting it higher on the priorities list than in previous years, I may actually make more headway in my lupus management specifically and my quality of life, in general.  As I think about my crud this month and notice my decreased kidney output, fatigue, foggy-headedness, poor skin quality, dry and burning eyes, muscle weakness, and headaches, I have to admit to that I have brought it all on myself with no interference from my immune system.  In fact, I suspect my immune system has turned the tables on me and is cursing me for making life so challenging.  I don’t blame it at all.

Although I know that this crud has to run its course, I have chosen some new ways in keeping my fluids up during and after this annual occurrence.  These may not be new to those of you out there, but writing them here will help me stay honest.  If you have any other suggestions, I’m open to hearing about them.

Starting this month, I will…

• …explore new teas and decrease my coffee intake.  Since I get so cold during the damp, winter months, I drink a lot of warm stuff.  Now that the sun/spring is on the way, I’m going to experiment with some homemade sun teas.
• …keep some type of soup in the refrigerator all the time for a quick breakfast, lunch, and snack. 
• …keep my desk cleared so that I can easily see if I have something to drink while I work.
• …try to keep from being slack-jawed while I think.  I have recently discovered how much I have my mouth open when I am working on something.  Could be why I picked up a cold at the height of flu season…duh.
• …not use my sense of thirst to determine whether I need something to drink.  I will use the empty glass on my desk or the clock.
• …when I go for ice cream, I’ll reach for applesauce instead.

and, finally,

• …will not keep track of how much I’m drinking, but evaluate how I feel every morning when I sit down to review my schedule for the day.  Tracking my intake amounts only puts additional emotional pressure on me to ‘perform’ and I am just stubborn enough to challenge it (as I have in the past).  By tracking how I feel and making sure I do these other previously-mentioned items, I am convinced that I will see some results.

What are some of the things that you do or have done that have worked to keep you ‘flowing’?