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

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

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

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

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

Without an “I” message –

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

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

With an “I” message –

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

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

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

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

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

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

-OXO products

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

-Arthritis Foundation website sometimes mentions products (Laurie)

Anyone else?

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

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

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

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

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

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

Here’s what I came up with:

My notes that I took during the session:

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

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

 (C.I.= chronic illness)

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

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

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

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

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

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

My revised Mission Statement is:

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

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

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

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

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

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

Maria

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

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

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

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

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

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

To enter this give-a-way:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ wherever we are both headed.

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

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

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

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

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

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

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

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

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

Yet, what about the young adults out there who can benefit from learning about health management early on in their diseases and symptoms?  They don’t want to join up in arthritis exercise classes with their grandma or attend a support group with women and men as old as their own parents.

This is true for middle-aged patients, too.  They may be new to diagnoses, early on in their disease progression or things may have evolved into new symptoms where they still battle with fear, uncertainty and confusion about their future. Yet, they don’t want to face things full-on by hanging out with geriatric patients well beyond parenting or full-time employment.

I’ve been researching online health-focused social networks in trying to gain some understanding of how unique the needs are of the participants and whether those needs are being met effectively.  Many times, I will find older patients becoming almost like ‘mother’ figures (of which I have been called myself) and their roles focus more on guidance rather than actual peer support.  That is where finding networks that can match up participants or are designed specifically to draw in certain age groups can help make health support more relevant.

We already have medical providers who are older, parents who are older and meet up with workshop or class participants who are generally older.  It is important to find friends who fit in more closely with who we are as an individual who happens to live with illness.  We hear it often, but it’s true:  we are more than our disease.  That is even more important to recognize in our youth as we face years ahead of us. 

I would like to introduce you to healKick~ and Rachel is here to tell you more about it.  I think this resource offers us an option that may fit our needs for peers to walk along side us rather than lead us on a path already traveled.

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

My name is Rachael and I am so excited to tell you about a great new resource for young people with Lupus and for chronically ill young people everywhere. It’s called healKick.

HealKick is a social networking site for young adults in their 20’s and 30’s with neuro-immune illnesses like Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Lyme Disease, Multiple Sclerosis, Myalgic Encephalomyelitis, Lupus, Rheumatoid arthritis, Sarcoidosis, Multiple Chemical Sensitivity, and Mold-related Illness.

As a chronically ill young person myself I know how challenging and isolating it can be. Dealing with the sickness is bad enough but when the friendships die and the loneliness hits, a bad situation seems even worse. The good news is that I have finally found a place where I feel accepted and understood again. I have a place where I can talk about my newest bizarre symptom, or the funny thing my dog just did. It’s a place where I can just be me. And that place is healKick.

The site was created to bring chronically ill teens and young adults together in a way that a traditional support group cannot. In a traditional support group, one condition is represented and members only have limited time and ability to connect and form connections.  At healKick there are multiple similar conditions represented but all the members are united by age. And there are many exciting opportunities to connect with others. It is a full social network with all the features you would expect, plus so many more.

There are message board-style discussion forums where you can discuss condition specific issues or your favorite TV show. You can chat with any of the online members either with traditional text-chat or our new voice/video chat room. You can choose the language of the site and connect with other users around the globe. There is a points system so you can earn prizes just by being active on the site. Search the site or look at the member map to find other members in your area. Come for a special event like a movie night and then stay for the new friends that you make.

This is a great opportunity to find commonality with and learn from others with slightly different conditions. It’s also a chance to connect with people with the same illness and encourage each other along the journey. The best thing about healKick is that no matter who you come across on the site, you will always have something in common with them because everyone on the site is in the same stage of life. This creates a community of people that is easy to fit into. I speak for everyone on the site when I say that we can’t wait to meet you!

See you soon,

Rachael

“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 .

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

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

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

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

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

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

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

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

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

Looking forward to your submissions!